Appendix 6 - Ref. Chapter 6 - Right rotator cuffs tendonitis and bursitis; momentary loss of vision

Events and Drs’ visits from 5/1/03 thru 4/27/04

5/1/03 - Blood Test for the Rheumatologist – Results: Sed Rate 15; C-rP 6 mg/L; Platelets 561. Decrease Pred to 8.

5/9/03 - Visit with Ophthalmologist – Press 18 L&R; Vision: L, 20/30-2. Laser treatment done to Rt eye lens to remove cloudiness. Inflammation cleared up behind both eyes, however, continue to take Lotemax, it’s a steroid and Pearl’s eyes seem to like it. Consider practicing Qigong ("Chi Tung") – it’s an alternative medical treatment that might be helpful for Pearl’s optic nerve regrowth. Next visit: Fri, 6/27/03, 8:30am.

5/15/03 – Visit with the Rheumatologist, Thurs, 11:15 am. Status since last visit (2/18/03):

  1. Prinivil has been stopped by the Cardiologist in case it might be contributing to high potassium.
  2. Inderal-LA has been replaced by Toprol-XL – Inderal may have been contributing to bronchospasm.
  3. Changed Internists because of lack of support on several occasions.
  4. Pearl was seen by the Gastroenterologist for dyspepsia, and by the Nephrologist for possible kidney deterioration. Dyspepsia is under control with doubled intake of PPI (Omeprazole); kidney function returned to normal in recent tests.
  5. The Vascular Surgeon viewed Pearl’s inflamed left heel area where the ulcer formed two years ago. He said it is damaged tissue that must be protected always – take sufficient prednisone forever if necessary to prevent it from ulcerating again. Doppler scan was done; no deterioration noted from a year ago – significant reduction in A/B index with exercise. He wrote a renewal prescription for Plavix – it is important for her to continue that.
  6. Bone density scan report – what is circled area on spine in view of spine?
  7. Pearl is feeling OK on 8 mg/day of prednisone.

Visit notes: Wt: 149; Press: 134/76. Dr felt Pearl’s left ankle and found pulse was good – no soreness, though redness remains at spot of earlier ulcer. Reduce prednisone at rate of 1 mg/month. Do a blood test in next couple of weeks (C-rP, Sed Rate & Platelets). Dr has no concern about elevated platelets – they reflect inflammation but as long as C-rP and Sed Rate are low GCA is in check. Spine flaw in bone density scan image is indeterminate – Dr prescribed an X-ray of the spine to get a better image. Pearl assured him she has never had a broken bone – he asked about her hips – they haven’t been painful. Next visit: 8/14/03, Thurs, 11:30 am.

5/21/03 – Visit with Hematologist, Wed, 10:15 am. Status since last visit, 2/19/03:

  1. Potassium, Creatinine and BUN were normal in last test, 4/4/03.
  2. GCA flare-up occurred early in April – increased prednisone to 10 mg/day at that time and have been tapering since; now at 7 ½ mg/day. C-rP and Sed Rate were normal in last test, 5/1/03.
  3. Platelets continue to be above normal – last reading was 600 – see chart.
  4. Iron hasn’t been measured since 2/20/03. Light nosebleeds were experienced mid-April.
  5. Changed Internists because of lack of support from the Dr on several occasions.

Visit notes: Press: 130/67. Wt: 150. Dr checked Pearl and determined she has no apparent problems other than secondary issues from Prednisone and GCA. He doesn’t need to see her unless something changes in the future. He did a blood test of CBC, CMP, Iron, Sed Rate and C-rP. Results to be available next week. (Results: Sed Rate 6; C-rP 2.32 mg/dl – high).

6/3/03 – Visit with the Cardiologist, Tues, 11:15 am. Visit Notes: Wt. 150. Press. 136/76, Pulse 84. Dr reviewed Pearl’s recent spinal xray report and films showing two minor spots of calcium in the thoracic aorta – Dr advised it is typical arteriosclerosis found in many people at her age and is not significant. Since Toprol-XL hasn’t given Pearl any problems so far he wrote a long-term Rx. He also gave her an Rx for Lasix, to take as needed. Next visit: 9/23/03, Tues.11:15a.

6/23/03The Gastroenterologist, Mon, 10:00 am. Upper Endoscopy performed by the Dr at his office location – no degradation noted from last exam 6 months ago. Next visit and Endoscopy in one year. Biopsies taken today – call for results Friday, 6/27/03, or later. Rx written for Prilosec, 20 mg, twice a day; 3 refills.

6/27/03Ophthalmologist, Fri, 8:30 am. Follow-up because Pearl is taking Lotemax, 2 drops daily in each eye (1 in am, 1 in pm). Is Dr. concerned about fungal infections developing with long-term use of Lotemax?

Visit Notes: 20/25+2. R16, L18. Both eyes look good. Right eye laser treatment results are good. Stop Lotemax – Pearl’s eyes seem to like the steroid but she’s on 6 ½ mg prednisone which should suffice. Next visit 3 months (if Lotemax is restarted come in 2 mos to get pressure checked); Fri, 9/26/03, 9:45 am (Pearl and James).

6/27/03 – Internist’s office called to advise he will be quitting the group 7/3/03. Pearl can see any other doctor there.

7/8/03 – Allergist’s office – requested Rx’s for Zyrtec and Allegra-D for CanadaRx to supply (Our Mail Order Co. doesn’t cover those anymore). Also requested an Rx for Flovent 44. Rec’d and ordered.

7/14/03 – Hydrocortisone dosage reduced to 15 in am and 5 in pm. It had been 20 in am and 5 in pm starting 7/2/03. Attempting to reduce by 5 mg/day every two weeks.

7/22/03 – Visit with new Internist, 12:00 Noon. Pearl experienced a sharp pain in her right upper arm last evening as she was reclining on the couch. About a half hour later we noted minor swelling where the pain occurred. Pain at rest was minimal afterwards, but some types of motion brought pain. She applied cold packs which seemed to help. In the morning we made an app’t with Dr in hopes of getting an X-ray to determine if it was broken. Dr advised it looked like a pulled ligament to him – he expects it will turn black and blue over time. He referred her to an Orthopedist. See Internist in one month – Tues, 8/19/03, 10:00 am. I had sent an E-mail to the Rheumatologist advising of Pearl’s pain; he advised she not increase hydrocortisone for this trauma, and see an Orthopedist. Wt: 152; Press. 140/70.

7/23/03 – Visit with Orthopedist, 8:40 am (Oviedo). After examination and X-rays of her right shoulder Dr advised Pearl has rotator cuff tendonitis. He gave her shot of Medrol (cortisone) and lidocaine (an anesthetic) in the shoulder and recommended she extend her arm upwards, in back and across her front several times within the hour to free up the tendon. Then, repeat this in the morning and the evening. He will see her next week and give her another shot in a different entry location in the shoulder if pain persists. The muscle ache in her arm, down from the shoulder, is reactive to the tendonitis and not the source of the pain. The tendonitis was a long time developing though it can act like it happened instantly. Next visit: Wed, 7/30/03, 9:45 am.

7/29/03 – Visit with Ophthalmologist; 3:30 pm, Tues. Pearl had a sore lower eyelid for several days and made an app’t with Dr today. Vision test: Left eye – 20/30. R 14; L 19. Dr advised that eyelid has a pimple that is drawing to a head. He prescribed Erythromycin to be used once in morning and once in evening. Apply heat; press to express puss. It should be gone in three weeks.

7/30/03Orthopedist – Wed, 9:45 am. Pearl’s shoulder area continues to hurt some but not as bad as last week. The pain is more localized near the right side of her neck – it was in her upper arm last week.

Dr checked her range of motion and pain level and advised that she didn’t need a second shot in a different location at this time. She is dismissed and is invited to contact him anytime should pain recur.

8/4/03 – Blood Test (CBC; Sed Rate; C-rP) today. Results were unfavorable showing high acute phase responses (Sed Rate 56 mm/hr; C-rP 2.4 mg/dl), and continued out-of-limit readings in CBC (WBC 16.9; RBC 3.47; Hemoglobin 11.3; Platelets 580; Lymphocytes 9.0; Absolute Neutrophils 14.7).

8/5/03 – Clinic Rheumatologist. An E-mail message was sent to Dr 8/5/03 for confirmation that Sed Rate and C-rP should be ignored as he advised Pearl last October. No response was received.

8/6/03 – The Rheumatologist advised Pearl to increase hydrocortisone to 15 in AM and continue with 5 in PM (which she did), in response to the 8/4/03 blood test results and the following E-mail sent to him today.

"Hello Dr,

Your nurse called us this morning to advise us of the blood test results of 8/4/03, and to inquire about Pearl's current steroid dosage. We had obtained a copy of the blood test last evening from the hospital since we hadn't heard from you yesterday.

The test results were surprising since Pearl has been feeling generally OK, except for the upper right arm pain which occurred suddenly a few weeks ago with little provocation. The Orthopedist examined her and X-rayed the arm and shoulder. He concluded it was rotator cuff tendonitis at the time and gave her an injection of Medrol in the shoulder joint. The next week in a follow-up app't he examined her and determined she had improved enough to not need a further injection. At that time he advised it was tendonitis or bursitis. The pain remains in the upper arm (not shoulder) but is tolerable. One other incident is a "stye" that formed in her left lower eyelid a few weeks ago. She went to the Ophthalmologist for this and is being treated with antibiotics - he expects it to leave within three weeks.

Because she doesn't seem to have clinical symptoms of GCA/PMR at this time I recommend we continue to reduce the steroid at the rate of 1 mg/month (equivalent prednisone). As I told your nurse Pearl has been at 15 mg hydrocortisone (10 in AM and 5 in PM) since 7/28/03, and will start 10 in AM and 5 every other PM on 8/11/03. This was the last dosage prescribed by the Endocrinologist a year ago when she first attempted to get off the prednisone. At that time most of her glands had started functioning again, but not to the level he expected they would reach in a month or so.

Pearl has not started to lose the weight picked up at start of prednisone therapy and is anxious about that. This is the point at which weight loss should begin.

I propose we continue the taper as mentioned above then retest at the time of her next app't with you (next Thursday) and discuss options at that time. If you think this places her at risk please advise. Naturally we would increase dosage if symptoms occur."

8/12/03Visit with the Allergist – Tues, 10:30 am. Status since last visit, 4/15/03:

Visit Notes: Wt: 153; Press: 136/69; Pulse 98. Benadryl should be taken as follows when needed for allergic reactions: 50 mg every 4 hours as needed. Pearl had been instructed in the past to take 50 mg every 10 minutes for a total of 150 mg – Dr said this far exceeds guidelines for Benadryl. Dr checked Pearl’s ears and found a little wax present – remove with OTC ear drops. Since Pearl has started Astelin she can stop Allegra-D in the AM and Zyrtec in the PM – phase out by stopping Allegra-D first for a month, and if successful, try stopping Zyrtec. Astelin combines the ingredients of both Allegra-D and Zyrtec. Should hives develop after stopping these meds use Zyrtec in favor of Allegra-D to try to counteract the allergens. Continue to use Flonase and Flovent as prescribed, along with Astelin. Rx provided for Astelin and Flonase; an Rx for Albuterol is being faxed to the Mail Order Co. Next app’t 6 mos.

8/14/03Rheumatologist, Thurs, 11:30 am. Status since last visit, 5/15/03:

  1. Pearl has a new Internist.
  2. Orthopedist dismissed Pearl after pain in the right upper arm subsided – attributed her problem to bursitis or tendonitis. Pain remains, though not acute as initially.
  3. Gastroenterologist performed an upper endoscopy again on 6/23/03. Results were unchanged from endoscopy performed 6 months earlier which indicated Barrett’s esophagus (metaplasia, not dysplasia). Will repeat in twelve months. Prescribed Prilosec, twice a day (40 mg total/day).
  4. Blood test results were unfavorable, in addition to acute phase reactants: WBC 16.9; RBC 3.47; Hemoglobin 11.3; Platelets 580; Lymphocytes 9.0; Absolute Neutrophils 14.7.
  5. Reconsideration of Vitamin E – it was stopped 9/15/00 by Dr to see if it might allow reduction of prednisone dosage. (Pearl got right calf and foot cramps for a couple of days after stopping it). Several medical articles consider it to be a strong antioxidant, good for circulation, preventative for CHD, aging and disease, and especially needed by older people due to decline of production of natural antioxidants.
  6. CMP hasn’t been measured since 5/21/03 – curious about potassium and alkaline phosphatase.
  7. Guidelines for tapering hydrocortisone?

Visit notes: Wt: 153; Press: 124/72. Vitamin E is no longer favored by Dr; use is optional. Rx written for CMP, Sed Rate and C-rP - to be taken next week. Dr thinks hydrocortisone may have to be increased – see results of blood test next week. Dr doesn’t think bruises that Pearl experiences cause increase in Sed Rate or C-rP. I advised Dr that the Clinical Rheumatologist suggested ignoring C-rP and Sed Rate even if it goes higher than 80 mm/hr. Dr thinks that sudden increase from 6 mm/hr on 5/21/03 to 56 on 8/4/03 is alarming. Next app’t in 3 mos: Thurs, 11/13/03, 11:30 am.

8/19/03Visit with the Internist – Tues, 10:00 am. Status since last visit with Dr, 7/22/02:

Rheumatologist

Allergist

Cardiologist

Ophthalmologist

Visit Notes: Wt: 153; Press: 140/62. Dr advised he specializes in orthopedics, having worked closely with rehab facilities here and in NY State (he’s been in our area for 3 years). He prescribed physical therapy for Pearl’s right shoulder. Also, he prescribed a CPK test in addition to CMP, Sed Rate and C-rP. He recommended that CMP be done after fasting for a better glucose reading. He advised that Darvocet use should be minimized since it is highly addictive. Pearl has been taking two/day which he considers to be dangerous. He couldn’t recommend anything better since most have aspirin or would be allergic to people allergic to aspirin. Next visit in three weeks: Tues, 9/9/03, 10:00 am. (Rescheduled to 9/30/03, 11:00 am)

8/20/03 – Blood Test, fasting. Results: Sed Rate 52, down from 56; C-rP remains at 24.

The following message was sent to the Rheumatologist via E-mail:

"Hello Dr, Pearl had the attached blood test done yesterday – the Internist wanted to add CPK so he wrote the prescription for the blood test, including the items you had prescribed - C-rP, Sed Rate and CMP. The results were disappointing indicating little change - Sed Rate decreased from 56 to 52 which is in the right direction at least. The Internist also prescribed physical therapy for Pearl’s right shoulder, considering it to be tendonitis. Do you think it might be Polymyalgia Rheumatica instead of tendonitis, and if so, Physical Therapy might be unnecessary? The pain in her upper arm started when her hydrocortisone was reduced so might it be a flare indicator?"

The Rheumatologist’s nurse called back to advise: increase prednisone to 10 mg/day, stop hydrocortisone; repeat blood test in 3 weeks; right shoulder tendonitis is not PMR; Physical Therapy is a good idea.

Pearl decided to not start Physical Therapy until seeing what the effect of increased prednisone is.

9/9/03 – Blood Test prescribed by the Rheumatologist. Results: Sed Rate decreased to 21 (was 52 8/20/03); C-rP decreased to 12 from 24 mg/L. The Rheumatologist recommended reducing prednisone from 10 to 8 mg/day and sent a fax Rx for another test in 3 weeks (9/30/03).

9/10/03 – Rx for Levsin – obtained from the Gastroenterologist (.125 mg; 3/day; 90 day supply; 3 refills).

9/23/03Cardiologist, Tues, 11:15 am. Status since last visit (6/3/03):

  1. Upper Endoscopy performed 6/23/03 – no change from earlier exam. But Dr increased Prilosec to 2 pills/day (40 mg total) because of general irritation in her stomach and esophagus.
  2. Pearl had a flare-up of Polymyalgia Rheumatica – bursitis and rotator cuff tendonitis of right upper arm and shoulder in July; an X-ray was taken of her shoulder by an Orthopedist who made the Dx. Increased prednisone to 10 mg/day from 4. Sed Rate and C-rP were elevated at 56 mm/hr and 24 mg/L.
  3. Pearl vomited and took 3 nitro pills for chest pain last Sunday – her sister (a smoker) visited and the smell of smoke made Pearl nauseous.

Visit Notes: Wt. 152; Press. 142/78, pulse 90. Dr listened to her chest, back and carotid arteries. He gave her Rx’s for Norvasc, Minitran and Nitrostat; also for a lipid test (last was done 1/30/03). Next visit in 3 months: 12/16/03, Tues, 11:00 am.

9/30/03 – The Internist, Tues, 11:00 am. Status since last visit (8/19/03):

  1. Blood test on 8/20/03 showed Sed Rate and C-rP remain elevated at 52mm/hr & 24 mg/L respectively. The Rheumatologist increased prednisone to 10 mg/day. Based on reduced readings on 9/9/03 of 21 (Sed Rate) & 12 (C-rP) Dr reduced prednisone to 8 mg/day.
  2. Medical paper on PMR (Ref. P, 50. In my Index) describes rotator cuff pathology or bursitis as PMR symptoms. Pearl didn’t go to physical therapy because the shoulders aches (left and right shoulders) are attributed to PMR which is subdued by prednisone.
  3. Pearl needs a Rx for Darvocet – she’s taken as many as 3 pills/day for the shoulder aches.
  4. Blood test to be done today – Sed rate and C-rP for the Rheumatologist; Lipid Profile for Cardiologist. Can Dr prescribe CBC & CMP? Platelets were high at 580 on 8/4/03; Potassium was elevated at 5.4 on 9/9/03.

Visit notes: Wt: 152; Press. 106/64. Dr is concerned about high creatinine (1.6) in recent blood tests. He gave Rx for 24 hour urine test, CMP, Platelets and Lipid Test. He recommended that Pearl follow-up on the elevated creatinine. We advised him that Pearl has a Nephrologist; I showed him notes from visits in March with the Nephrologist when Potassium and Creatinine were elevated. Since Lipid test was done in January, ’03, and showed good results he didn’t understand why the Cardiologist would want it repeated at this time. (We opted to not have the Lipid test done today). Since Darvocet is so addictive Dr preferred that Pearl try Ultracet – it also can be addictive but not as much as Darvocet. Pearl opted to not get the Ultracet Rx filled since review of the Ultracet literature indicates possibility of anaphylactoid reaction; also, it is indicated for short term acute pain of 5 days or less. Darvocet is indicated for long term use. Dr gave Pearl an arm and leg motion test and was satisfied with her current range of motion. No follow-up app’t was made since Pearl is seeing so many specialists for her current needs – contact Dr as needed in the future. Blood tests were done today. Urine test is on hold pending current creatinine reading.

10/1/03 – Blood Test results were obtained. Sed rate up to 37 mm/hr (was 21); C-rP up to 24 mg/L (was 12); Creatinine up to 1.7. Pearl is proceeding with the 24 hour urine test, and made an app’t with the Nephrologist for Fri, Oct. 17, 3:15 pm. Results of CMP & CBC were faxed to the Rheumatologist; results of SR and C-rP were faxed to the Internist. The Rheumatologist called to advise that Pearl increase prednisone to 10 mg/d in A.M.

10/6/03 – Hives & rash occurred during the night of 10/5/03 and evening of 10/6/03. It is attributed to Chinese food eaten each evening – hives broke out 8 hours and 4 hours later respectively. Two Benadryl were taken the first night with extensive sleep loss; 5 mg of hydrocortisone was taken the second evening and the hives were thwarted - no loss of sleep. Pearl is at 10 mg/day of prednisone so this was unusual.

10/7/03 – Darvocet & prednisone – Pearl was able to get by on one Darvocet yesterday and is trying to do likewise today. On 10/14/03 Pearl started 12 ½ mg/day of Pred. (2 ½ in evening) due to shoulders ache.

10/17/03The Nephrologist, Fri, 3:15 pm (Ref. Fax sent to Dr 10/3/03):

"You last saw Pearl on 3/10/03 for renal degradation which likely was caused by the dye used for an angiogram done the previous month. By April the condition had corrected itself and kidney function appeared to be near normal again. She has had blood tests on 8/20, 9/9 and 9/30 which indicate renal problems once again. BUN was 23, 23 and 26 in those tests, while Creatinine was 1.6, 1.6 & 1.7 respectively. Her Internist concerned about the elevated Creatinine, prescribed a 24 hr Creatinine Clearance and Total Protein test. The results are attached - they indicate impaired renal function. She has an appointment with you on 10/21/03 to review her condition. In the meantime she is trying to stop two medications: Zyrtec and Astelin, both allergy/asthma medications. She has been taking Zyrtec since 1/16/03, and Astelin since 6/1/03. We suspect Astelin is the culprit because the degradation happened after starting Astelin. She also takes Darvocet N-100, two/day, and Omeprazole (40 mg/day). She took 3 Darvocets/day a month ago because of acute shoulders aching. She has had a flare of GCA/PMR the past three months which required increasing prednisone to 10 mg/day. Please advise if her condition constitutes an emergency. Otherwise she’ll see you on 10/21/03."

Visit Notes: Wt: 152; Press: 137/73. Urine specimen given; results not reported to Pearl. Dr advised that none of Pearl’s medications, including Zyrtec and Astelin were causes of kidney deterioration. He recommended stopping daily Lasix which Pearl has been taking for past three weeks (to lower potassium). Dr isn’t concerned about her potassium. Kidney deterioration might be due to age. He stated that Pearl’s leg pains are the effects of Polymyalgia Rheumatica – nerve endings are affected. He prescribed Neurontin 200mg; take 200 mg/day – may have to increase it if that isn’t enough; may take several weeks to notice any effects. Neurontin is used primarily for Epilepsy but is also good for painful nerve endings. This should be better than drinking a liter of Tonic Water daily - which Pearl has been doing for the past couple of years for legs ache. Dr prescribed CBC, CMP, Aldosterone & Renin test to be done next Wednesday (10/22/03). Call him afterwards to be sure he got the test results.

10/17/03 – Flu Shot was administered by the Nephrologist today.

10/17/03 - Orthopedist, 11:10 am, Fri. Pearl visited Dr because of recurrence of shoulder(s) pain. Increase of prednisone from 10 to 12 ½ mg/day for past three days didn’t help – if it were PMR the prednisone was expected to take away the pain. Dr X-rayed her neck and found C7 vertebra to be significantly calcified (Osteoarthritis) – upper vertebrae also were affected but not as much. He suspected a pinched nerve, but X-rays indicated some spurs that may be causing the pain. After touching her neck and shoulders in various places, and viewing the X-rays, he gave her two injections of depomedrol (80 units) and an anesthetic in two places of her right rear shoulder near the neck. Pain felt on the left shoulder was less severe so he treated the right side at this time. He recommended stretching the arms above the head twice a day. Physical therapy might help if not too intensive since she bruises so easily. The pain may be associated with Polymyalgia Rheumatica. I inquired about Methotrexate – he advised that is used for Rheumatoid Arthritis, not Osteoarthritis. We advised that Pearl has poor kidney function and will be seeing the Nephrologist later today for this. Because of the kidney impairment Dr doesn’t want to prescribe any medications. Use the Darvocet as needed (up to 6/day). Ultracet was discussed – Dr prefers that to Darvocet – Ultram, a component of Ultracet, is used widely for muscle/joint pain. Dr isn’t concerned about the potential for anaphylactic shock, or the 5-day restriction noted in the Ultracet literature. Use only one Ultracet/day since it stays in the system much longer than Darvocet. Follow-up visit next Wed, 10/22/03, 10:20 at the Oviedo office.

10/19/03 – Ultracet started and stopped today. Pearl took 3 pills, 6 hours apart, as instructed – each time she experienced moderate tightness in her chest; the second dosage may have contributed to nausea later in the evening. She stopped Ultracet and restarted Darvocet as a result.

10/21/03 – Neurontin is available in 100mg pills, not 200 as prescribed. Pearl started taking 1 100 mg pill the first two evenings instead of 2. Her feet and legs felt better immediately. She started 2 pills on 10/20/03 and while there was no difference in her legs, she felt lethargic the next day (10/21). She will repeat two pills tonight for the blood test tomorrow, then revert back to one pill/day.

10/21/03 – Allegra-D was ordered from CanadaRx today – they contacted us and advised that the US FDA has classified Allegra-D as a controlled substance and it can no longer be shipped across the border – reportedly it is used on the street to make Ecstasy. Pearl will use up her current supply, then restart Astelin once again (Astelin has the ingredients of Allegra-D and Zyrtec) but is suspected by Pearl and I of contributing to kidney degradation (which the Nephrologist disagrees with).

10/22/03 – Orthopedist, Wed, 10:20 am visit notes: Dr recommended light massage for the shoulders which continue to ache; gave Pearl a Rx with a diagnosis of Myalgia. He reviewed X-rays of her spine which we brought (taken in May, ’03, for Rheumatologist) and noted significant arthritis deterioration in discs of the lower spine, similar to that in her neck vertebrae. He prescribed a corset to wear as much as she wants – should be helpful when standing; can be worn inside clothing or outside. Dr was pleased to see Neurontin is being used – prescribed by the Nephrologist. He would like her to increase the dosage after a week at 100 mg/day to 200 mg/day – 12 hours apart. Neurontin takes time for the body to adjust to – at high doses (1600 mg/day or so) fatigue may be a side effect. Neurontin may be good for aches other than legs. Next visit Wed 11/26/03, 9:35 am.

10/22/03 – Blood Test today. Results: Sed Rate 18; C-rP .9 mg/dl. The Rheumatologist advised reduction of prednisone to 9 mg/day from 10. Copy faxed to the Internist with question about low Lymphocytes.

Results of Renin and Aldosterone expected about 11/6/03. Sent the Nephrologist a fax noting the low Lymphocytes.

10/26/03 – Blood Test – sent the Hematologist a copy of the 10/22/03 blood test questioning the low lymphocytes and asked if Pearl should schedule a visit with him. Response was "No".

11/6/03 – Neurontin was reduced to 100 mg today (1 pill) because Pearl experienced tremors. Review of the potential side effects indicates benefit of higher amounts is not worth risk. Her legs felt better (less ache) when on one pill; two made no further impact so she will continue with one. She continues to drink Tonic Water but a reduced amount since starting Neurontin.

11/7/03 – Ophthalmologist, Fri, 10:30 am. Rt. eye: observed two fingers with eye moved to the right. Lt. Eye: 20/30 +2, w & w/o pinhole. FA (fluorescein angiogram) photos taken – all looks good (FA is a study of the retinal blood circulation on the inside back of the eye.). Next visit in two months – Fri, 1/9/04, 10:15 am. (Review Pearl’s condition at time of next visit – consider postponing for a month if OK; Dr had scheduled 3 month follow-up on 5/11/01, 10/5/01, 1/17/03, & 6/27/03 visits).

11/8/03 – Dizziness experienced during the night – had to be helped to the bathroom. Cause suspected to be taper of Neurontin from 200 mg/day to 100 mg/day which started 11/6/03.

11/11/03 – Blood Test results (10/22/03 test): Aldosterone is high at 88 (normal range is 1-21ng/dL; Renin is 1.2 ng/mL/h (normal Na-deplete, upright: 2.9-10.8; Na-replete, upright: <= 0.6-3.0). Make app’t with the Nephrologist to discuss results. Request a Rx for CBC and CMP from the Rheumatologist for visit with the Nephrologist.

11/13/03Rheumatologist Visit, Thurs, 11:30 am. Status since last visit, 8/14/03:

  1. PMR effects have been acute for the past two months – aching shoulders, back of neck, and upper right arm. Right arm has been almost useless for past two weeks. Not affected by prednisone dose. Neurontin (200 mg/day) was prescribed by the Nephrologist for legs – 100 mg/day helped leg aches but not shoulders. 200 mg/day was tried but caused tremors and provided no benefit above 100 mg/day. Blood pressure measured slightly higher in right arm vs. left arm so blood flow seems OK. The Internist prescribed physical therapy and the Orthopedist prescribed light massage for Pearl’s shoulders – she has not followed up on these recommendations, preferring to wait for prednisone to improve her condition.
  2. Lymphocytes were lowest ever measured at 4% in 10/22/03 blood test (normal range: 20-44).
  3. Creatinine and BUN were elevated in 10/22/03 blood test. Creatinine clearance was about 30% of normal on 10/1/03 (25 ML/MIN – normal range is 75-155).
  4. Prednisone is at 8mg/day; was 10 from 10/1 thru 10/13, 12 ½ thru 10/16; 10 thru 10/22; 9 thru 11/3.
  5. Pearl has seen the following doctors since last visit:

Prescriptions: Pearl needs a Rx for Darvocet – she has been using up to 3 pills/day for the aching shoulders. 90 day supply with 1 refill is desired. (Note: Internist prescribed Ultracet as an alternative to Darvocet – Pearl tried it but had tightness in her chest so discontinued it). Also, she would like a Rx for CBC, CMP (to evaluate Lymphocytes, WBC, Creatinine and BUN), Sed Rate and C-rP.

Questions for Rheumatologist:

  1. Why doesn’t PMR pain diminish with increased prednisone? What do you recommend for her aching shoulders and upper right arm?
  2. How are low lymphocytes related to PMR/GCA?
  3. How does sudden kidney degradation relate to PMR/GCA?

Visit Notes: Wt. 151; Press: 136/74. Dr gave Pearl an injection of triamcinolone, 60 mg, in her right shoulder to ease the pain. He described her problem as tendonitis, which is very common among his patients – he doesn’t attribute it to GCA/PMR. He advised that PMR continues to flare from time to time as indicated by increased sed rate and C-rP. We reviewed the Prednisone History Chart (Arterit9.xls). Pearl should remain at 8 mg/day of prednisone. He prescribed CMP, sed rate, C-rP and a hemoglobin test. He also provided a Rx for Darvocet (180 with one refill). Dr advised that low lymphocytes is not a concern – it is a condition resulting from taking prednisone. Low kidney function likely is due to Lasix – as long as Lasix isn’t needed for water retention don’t take it (Pearl stopped it as the Nephrologist advised). We told him of Neurontin working well for Pearl’s leg aches at 100 mg/day – he doesn’t prescribe Neurontin so doesn’t have any thoughts about it’s efficacy. Next visit 2/12/04, Thurs, 11:00 am.

11/14/03 – Blood Test results from 11/13/03 test: Sed rate increased to 32 from 18; C-rP up to 12 Mg/L from 9; Creatinine better at 1.4 (was 1.6); lymphocytes better at 9% (was 4%); CO2 is 39, the highest it has ever been; Myelocytes are high at 1.0 – they were this high once before (Aug 29, ’01 – when Sed Rate was 74 – error?). The Rheumatologist advised to stay at 8 mg/day prednisone dosage. Observations: CO2 may have been elevated abnormally due to the injection of triamcinolone administered by Dr an hour before the test – steroids increase CO2. Ref: Myelocytes (comprised of neutrophils, basofils and eosinophils) kill and digest bacteria – their being elevated likely is not a concern.

Copy faxed to the Nephrologist. Contacted the Nephrologist’s office (voice message and fax) to get an app’t to review recent test data (aldosterone, renin, current test results) – initial indication is Jan ’04. App’t may not be needed – high aldosterone may have been due to use of Lasix daily for a couple of weeks. Dr’s nurse called 11/18/03 to inform us that Pearl’s kidneys are now functioning fine – no need for Dr to see Pearl unless she wants more clarification. I advised the good news is all we need, no follow-up app’t is desired.

11/15/03 – Chest/back discomfort lasted most of the day today. Try changing dosage of prednisone from 8 in am to 7 in am and 1 in pm since prednisone exists for only 20 hours in the serum – it takes effect 4 hours after dosing. Pearl is feeling better since this change – may be the Rheumatologist’s shot has finally done its thing, or dosage change may be beneficial (11/18/03).

11/26/03Visit with the Orthopedist, Wed, 9:35 am. Right arm/shoulder pain continues – Pearl can do little with the arm, it is painful near the shoulder when she moves it. History of right arm pain:

7/21/03 – Sharp pain in right upper arm upon reclining on couch (nothing brought it on).

7/22/03 – Visited Internist on emergency basis for arm evaluation; sent to Orthopedist.

7/23/03 – Visited Dr – took X-rays, gave shot of Medrol in right shoulder – Dx tendonitis or bursitis.

7/30/03 – Visited Dr – pain continues but not as bad; moved to neck (no shot).

8/4/03 – Blood test showed high acute phase reactants (sed rate and CrP indicated flare of GCA/PMR – (tendonitis and bursitis are symptoms of PMR).

8/19/03 – Internist prescribed physical therapy for right shoulder (Pearl hasn’t done this – has been waiting to see new blood test results).

8/21/03 – Another blood test showed GCA/PMR inflammation is still active –increased prednisone.

9/30/03 – Both shoulders ache.

10/2/03 – Blood test showed increase in inflammation – increased prednisone again to 10 mg/day.

10/17/03 – Nephrologist prescribed Neurontin for leg aches (to reduce Tonic Water intake); Rx was for 200 mg/day but Pearl finds 100 mg is better - 200 caused lethargy.

10/17/03 – Dr revisited because of shoulders ache. X-rays taken of neck and chest. Two injections given in right shoulder area of neck. Ultracet prescribed – Pearl tried 3 pills, 6 hours apart but stopped because of moderate tightness in her chest, and nausea.

10/22/03 – Dr prescribed light massage (not done because not covered by Medicare); increased Neurontin to 200 mg/day again.

10/23/03 – Blood test indicates inflammation is under control once again – started to taper Pred.

11/6/03 – Neurontin was reduced again from 200 to 100 mg because of tremors.

11/8/03 – Dizziness experienced during the night – had to help Pearl to bathroom. Cause suspected to be taper of Neurontin from 200 to 100 mg/day. No problems since.

11/13/03 – Rheumatologist, routine visit. Right arm has been useless for past two weeks. Dr gave an injection of triamcinolone, 60 mg, in right shoulder to ease the pain. He diagnosed it as tendonitis, not related to GCA/PMR.

11/15/03 – Blood test showed acute phase reactants climbing again – staying at 8 mg of Pred. Chest and back discomfort throughout the day.

11/26/03 – Pearl continues to have right arm/shoulder pain – for the past several days she feels shocks run up and down her arm when moving it.

Rx needed for Neurontin – 100 mg pills, 2/day, 90 day supply, 3 refills.

Visit Notes: Dr asked where Pearl had her blood test done on 10/22/03 which he prescribed – he didn’t receive a copy of the report from the lab. I checked files at home and determined that the Nephrologist prescribed the test. Evidently I advised Dr during Pearl’s visit on 10/22/03 that Pearl was going to get the blood test done that day but didn’t realize he wanted a copy of the results. (After the visit today I faxed copies of that test and a subsequent one done on 11/13/03 – both had CMP, CBC, sed rate and C-rP). He observed Pearl’s range of motion with her right arm which was good. He stated he didn’t think she needed to go to physical therapy at this time. He prescribed EMG and Nerve Conduction Studies to be done on Pearl’s right arm. Contact Dr two weeks after for a follow-up app’t. I asked Dr if he thinks Pearl’s problem with her arm is related to PMR – he advised he didn’t think so. I asked if Pearl could bake pies today (tomorrow is Thanksgiving Day) – he recommended it as being therapeutic. An app’t was made later with a Neurologist 12/9/03, Tues, 3 pm. Dr gave Pearl a prescription for Neurontin (100mg, 2 pills/day) for mail order.

11/30/03 – Dosage Analysis shows that the minimum daily dose of prednisone needed by Pearl to avoid flares and to maintain C-rP below 12 mg/L, and sed rate in normal range is 8 mg/day. (See SedRate sheet of Arterit9.xls file). She is at 7.5 mg/day at this time (6.5 in AM; 1 in PM).

12/9/03 – Visit with the Neurologist, Tues, 3:00 pm.

Pearl is here for nerve conduction tests. These were prescribed by the Orthopedist to aid in diagnosis of right upper arm/shoulder/neck pain which started 7/21/03. In recent two weeks "electrical shock" type pain occurred on occasion. Diagnosis over past several months has been right rotator cuff tendonitis and bursitis. Several injections of cortisone have been given in upper right arm, shoulder and neck areas. By 9/30/03 both shoulders were aching – blood test later showed elevated Sed Rate and C-rP indicating flare-up of GCA/PMR (Giant Cell Arteritis/Polymyalgia Rheumatica). Symptoms are typical of PMR but neither the Orthopedist nor Rheumatologist think PMR is the cause. Pearl is and has been treated for GCA and PMR with oral cortisone for the past five years. She currently is taking 7 ½ mg/day of prednisone.

Background:

10/27/99 - Pearl first encountered left shoulder/upper arm pain on 10/27/99 – she went to the ER to determine the cause of pain in her left shoulder area, and numbness in her left hand. Blood pressure rose from 147/72 to 189/96 within an hour and a half. The ER Dr concluded it was a muscle spasm between neck and shoulder. Eventually this was determined to be a flare of GCA/PMR – prednisone was increased after sed rate was found elevated. Doppler scan later showed blood flow reduced in left arm due to artery restriction.

1/19/02 – Pearl complained of a very sore left upper arm, above the elbow – acts like a stress fracture of the small bone. Causes her to wince with movement. Became spasmodic by 2/6/02 affecting upper arm one day, lower arm another day, wrist another time, then whole arm, then part of limb, etc. The Rheumatologist attributed pain to tendonitis and gave her an injection of cortisone in left shoulder on 2/12/02. By 3/25/02 left arm shoulder pain had subsided. Prednisone was at 10 mg/day.

5/24/02 – Pearl has been experiencing some burning sensation on her left neck and shoulder area the past few days. Possibly neuralgia due to cooling effect of high winds while swimming in pool – got chilled to point of using the heated spa to warm up. Prednisone was at 5 mg/day.

7/6/02 - Left shoulder pain was eliminated by 1 Nitro pill. On 7/7/02 left shoulder pain was eliminated by 3 nitro pills. Prednisone was at 4 mg/day. On 8/20/03 Sed Rate and C-rP were elevated indicating a flare of GCA/PMR – prednisone was increased to 10 mg/day.

10/7/02 – MRA done at a remote Clinic – showed all blood vessels leading from the heart are normal, patent, with no evidence of narrowing or other abnormalities to indicate a vascular pathologic process. Includes thoracic, upper abdominal aorta, axillary, subclavian, brachial and carotid arteries. The Clinic Rheumatologist has no idea why she has pain in left arm at times but thinks it is not related to GCA or vasculitis. Prednisone is at 8 mg/day

10/11/02 – Pearl took 3 nitro pills for left shoulder pain. The pills relieve the pain.

2/10/03 – Another flare-up of GCA/PMR occurred – no arm pain noted, but left leg circulation impaired. Increased prednisone to 10 mg/day. Angiogram done by the Cardiologist on 2/13/03. Results satisfactory – all coronary and kidney arteries were fully open.

7/22/03 – sharp pain occurred in upper right arm – began treatment with the Orthopedist. Pain moved around to shoulder/neck area, then to left shoulder, then back to right arm. Prednisone at 5 mg/day. Blood test on 8/4/03 showed high sed rate and C-rP indicating flare up of GCA/PMR. Increased prednisone to 10 mg/day. Pain in right arm/shoulder continued off and on over the next several months.

Visit Notes:

Dr examined Pearl’s right arm/hand/fingers strength, range of motion, and conducted conductivity tests with surface pads and stickpin electrodes. He couldn’t conclude what is causing pain in the right arm and shoulder, numbness in some fingers and nerve shocks at times. He prescribed an MRI to be done on her right shoulder/neck area. He said PMR can’t be ruled out. The MRI lab will contact Pearl.

12/11/03 – Visit with Ophthalmologist on an emergency basis. Pearl experienced momentary loss of vision in her left eye last evening while shopping in the Mall (temporary "whiteout"). No pain or loss of presence was associated with it. Dr examined her eyes and found everything completely normal – he took photos using dye to observe for clotting and found nothing unusual. He recommended increasing prednisone to 60 mg today since GCA may be present but undetected, then phone him tomorrow when blood test results are available of sed rate and C-rP. Blood Test was done today, before seeing Dr – included sed rate, C-rP, BUN and Creatinine. Pearl advised Dr that she will be having an MRI done on her neck and shoulder in the next two weeks. He suggested she ask them to do a head scan at the same time (see note of 12/12/03 below for MRI order request).

If reactants are elevated he is expected to recommend 60 mg for another day, 40 mg for 2 days, then 20 mg for two days, then revert to normal controlling dose. If reactants are normal he likely will recommend reverting back to normal controlling dose at once. I advised the Rheumatologist of these events in Faxes 12/11 & 12/12/03. Next visit with Dr will be that previously scheduled – 1/9/04.

12/12/03 – The MRI office called to make the MRI app’t for 12/16/03, 5:00 pm. If the Ophthalmologist wants a head MRI he must send them a separate order.

12/12/03 – Blood test results: C-rP increased to 21mg/L; was 12 mg/L 11/13/03. Sed rate decreased to 26; was 32 11/13/03. The Ophthalmologist advised to take 60 mg/day for 3 days; 40 mg for 3 days; 20 mg for 3 days. The Rheumatologist concurred in telecon this date with those recommendations. She is taking 10 of her daily elevated doses in the evening. Pearl will drop to 15, 12 ½, staying one week at each level, then to 10 for a month Results of test faxed to the Ophthalmologist, Neurologist and Orthopedist this date. The Nephrologist was advised of high Creatinine (1.6) via fax.

12/15/03 – Ophthalmologist advised in telecon this date that he will authorize MRI of left orbit to be done in conjunction with neck and shoulder MRI to be done tomorrow..

12/15/03 – MRI rescheduled to today, 1:05 pm. Completed neck/right shoulder area. Couldn’t do Orbit MRI today since unique contrasts are required for each MRI. Orbit MRI scheduled for Thurs, 12/18/03, 12:30 pm.

12/16/03Visit with the Cardiologist, Tues, 11:00 am. Status since last visit, 9/23/03:

  1. Pain returned to right arm/shoulder/neck and saw the Orthopedist 10/17/03. She was referred to a Neurologist for evaluation of nerve shocks in her right arm extending to her fingers. Conductivity tests were done but were inconclusive so she is having an MRI done this afternoon of her right shoulder/neck area. Could be Polymyalgia Rheumatica.
  2. Pearl lost sight in her left (good) eye momentarily while shopping in the Mall Wed. evening (12/10/03). She saw the Ophthalmologist on an emergency basis on Thurs. (12/11). She had sed rate and C-rP measured also on Thurs. – results: C-rP was elevated to 2.1 mg/dL from 1.2 mg/dL on 11/13/03. Since symptoms and C-rP indicated possible flare of GCA he increased Prednisone to 60 mg/day for 3 days, 40 mg/day for 3 days, 20 mg/day for 3 days, then to controlling dosage. She is at 40mg now.
  3. You suggested lipid panel test last visit but Rx was written for CMP, not lipids; last lipid test was 1/03.

Visit Notes: Wt. 152. Pulse 96; Press. 144/90. Advised Dr that Creatinine was elevated at 1.6 in test of 12/11/03, and platelets were highest since 1999 at 656 in 10/22/03 test. Gave Dr copies of 10/22/03 and 11/14/03 blood tests. Dr noted that Pearl’s heart seems to be good at this time. He expressed concern however that she isn’t getting the aggressive treatment needed to manage the GCA. He recommended she get a second opinion at a renowned Clinic. He advised that he isn’t a Rheumatologist, just an Internist, but thinks there are several therapies that can replace prednisone. I told him I believe Pearl will be able to control with 10 mg/day of prednisone – he thinks that level would not be detrimental over the long term, but would prefer to see her reach something like 5 mg/day. He wants to see her in one month: Fri 1/23/04, 11:00 am.

12/18/03Orbital MRI done at 12:30 pm, Thurs. Contrast IV fed in right hand – large bruise developed later covering most of hand.

12/19/03Dermatologist, Fri, 12/19/03, 11:20 am. Froze a section of Pearl’s nose, several small warts on her legs.

12/24/03 – Visit to ER for large red welt on upper right arm. Welt formed within a couple of hours after rolling pumpkin pie shells and noticing severe discomfort – the Hospital ER Dr advised that effort likely caused damaged blood vessels in the upper arm, under the skin. Gravity caused the blood to pool and drop down the arm to cause the large welt, about ¼ inch raised – appeared like a sack of blood under the skin. When we arrived at the ER at 7:00pm the welt was raised. By the time the doctor saw her the welt had diminished so that it wasn’t raised anymore, but the spot had grown by about an inch in each direction. The arm remained swollen, similar to the appearance it had on 7/22/03 when the initial pain was encountered in that upper arm. He recommended she apply heat to the red area to help it heal. Watch for signs of infection later – he doesn’t expect any because her arm looks intact (no cuts). We were concerned that the problem might be phlebitis, allergic reaction, vasculitis – he said that infection and clotting would take much longer to develop to that size, also fever, chills, systemic involvement would occur. He stroked the inflamed site and advised that stroke would have been very painful if it were phlebitis – the stroke turned into a deep red mark within a few minutes (more local bleeding under the skin). Pearl was discharged at midnight. Call if concerned. (During the night a sharp edge of the heating pad ripped a gash about 1½ inches long in her arm at the bottom of the welt).

12/28/03 - Chronology of recent injections and blood tests relating to right arm:

*Note: Medical book advises that more than 3 injections in a year can cause damage. Pearl shouldn’t receive any more injections in her right shoulder/neck area.

12/29/03 – Visit with the Orthopedist, 12/29/03, 4:10 pm, to evaluate right upper arm discoloration, swelling, hardness and seepage. Follow-up of 12/24/03 ER problem.

Visit Notes: Regarding the hematoma in her right upper arm – we discussed the ER Dr’s observations. Dr recommended using cold packs instead of heat – heat is causing it to spread. Dr doesn’t know where the leakage is coming from – could be a vein or artery, possibly an artery along the tendon. He has been doctoring her for right shoulder bursitis and rotator cuff tendonitis since July, ’03. Keep area around cut in arm very clean – Dr prescribed a soap to scrub the area with (Phisohex 148 ML). He prefers she use an antibiotic cream but Pearl is allergic to most. It’s important to keep germs out. The yellowish hue of the skin is from blood under the skin. Move the right arm gently through as much range of motion as possible, don’t stress it by heavy exertion. Pearl could raise it over her head, had strength in it – no apparent limitations, though some motions were painful. Dr gave her an injection of cortisone in the right shoulder, front. I questioned Pearl’s continued use of Plavix – Dr advised that should be discussed with the prescribing Dr (Vascular Surgeon). Pearl questioned if dyes used in MRI and Ophthalmologist’s photos could have contributed to current upper right arm problem – Dr said no, the dyes dissipate and are eliminated from the system quite rapidly.

Follow-up of earlier problem involving electrical shocks running through Pearl’s right arm:

Copies of MRI report were requested from the Neurologist to be faxed to Dr for the visit. He would like to see the MRI scans. Reports showed several areas of nerve involvement in neck vertebrae; shoulder was clear. Dr advised epidural block generally is the remedy for this but shouldn’t be done while Pearl has active GCA. Next visit in 3 weeks. Wed, 1/21/04, 8:30 am, Oviedo Office.

12/30/03 – Vascular Surgeon’s office was contacted. Dr is out of town, earliest app’t available is 1/5/04, Mon, 2:00 pm. Discussed Plavix with his nurse on phone. Because blood leakage is evident in her arm, based on ER Dr’s and Orthopedist’s observations, and Plavix was not prescribed in conjunction with surgical remedy, she recommends discontinuing Plavix until discussing Pearl’s condition with Dr on 1/5/04. She requested that Office visit reports be requested from ER and the Orthopedist to be faxed to Dr for his reference in treating Pearl. I sent the ER instructions of 12/24/03, and requested that the Orthopedist’s Office Notes of 12/29/03 visit be faxed to the Vascular Surgeon – both done this date.

12/30/03 – Ophthalmologist’s was contacted – we requested that a copy of MRI report be faxed to Pearl.

Report received 1/2/04 – good results except inflammation noted in right optic nerve; significance?

1/5/04 – Visit with the Vascular Surgeon, Mon., 2:00 pm. Discuss:

  1. Hematoma in upper right arm; is there a concern about what caused it?
  2. Plavix – is it OK to discontinue? Initially prescribed by Clinic Rheumatologist because of leg artery blockages and continued high platelets.

Visit notes: Press. 152/82. Dr advised leakage in right upper arm likely was a self-limiting small blood vessel that is not bleeding anymore. Arm is normal color, though still swollen and sore. He said cause can’t be found in such an event. He advised that when internal bleeding occurs Plavix should be stopped until bleeding has stopped. He suggested Pearl see a Hematologist to follow-up on high platelets and for disposition of use of Plavix in the future. Since the Hematologist doesn’t consider Pearl’s platelets to be of concern Dr suggested a second opinion. He recommended that Pearl stay off Plavix until after seeing the Orthopedist again, 1/21/04 – then restart Plavix every other day to test for renewed bleeding. Dr was given a copy of the MRI Report and viewed the MRI Films but made no comment. Next app’t is 3/16/04, Tues, 10:00 am (Doppler Scan).

1/6/04 – Blood Test requested of the Rheumatologist. Results of CMP, CBC, C-rP and sed rate were generally OK. C-rP was negative; Sed Rate was 16; Creatinine was 1.4 (down from 1.6 in Dec.); Platelets were 517 (down from 637 in Nov.). Dr advised Pearl to reduce prednisone as we proposed (taper to 10 mg and hold for a month). Pearl restarted Plavix since Platelets are still above normal – 3 pills/wk instead of daily.

1/9/04 – Visit with Ophthalmologist, Fri, 10:15 am. MRI films are available for Dr to view if desired.

Visit Notes: Vision test: 30-1; Press. R16, L16. Both eyes were examined and look good. Discussed prednisone treatment, now at 11mg/day; blood test results show C-rP and sed rate normal for the first time since May, ’03. Discussed Plavix and visit to ER on 12/24/03 – Dr isn’t concerned about use or non-use of Plavix. Dr viewed MRI films – curious about inflammation shown and noted in right optic nerve. Did Fundus Fluorescein Angiography of both eyes. Erythromycin eye salve, 3 x daily for 3 wks for rt. eyelid pimple. Dr has a new machine to view flow to eyes – will check Pearl in two weeks: App’t 1/26/04, Mon. 10:00am.

1/10/04 – Plavix was stopped due to upper arm discoloration and pain in area where bleeding occurred 12/24/03; thought to be indication of renewed bleeding.

1/14/04 – Visit with the Neurologist to discuss MRI results.

Visit Notes: Wt: 152; Press: 150/70.

- Advised Dr that Pearl lost vision momentarily the day after last visit, started high dose (60 mg/day) prednisone regimen – now down to 10 mg/day. Sed rate and C-rP are normal. Advised him of ER visit for internal trauma of right upper arm 9 days after MRI, and decision to stop Plavix due to internal bleeding. Started Plavix later after blood test showed platelets still elevated but stopped after two days because bleeding in arm was evident again (slight).

- Dr reviewed MRI report and film – pointed out neck vertebra deterioration. In some areas it is restricting nerves going to arms, others closing in on spinal cord. It is typical of old age, but worse than some. Dr recommends no surgery or medication (other than prednisone) unless it causes severe discomfort, numbness or other indication that surgery would be beneficial. She’s had only one electrical shock since last visit - that was during the internal trauma incident. Dr released the MRI film to Pearl to keep.

- Dr was concerned mostly about the TIA (transient ischemic attack) Pearl experienced, especially because of stopping Plavix. High blood pressure could contribute to a stroke. We advised that Pearl’s pressure normally is low (120 or less, over 70). The high reading today might be from the increased prednisone she’s been taking. He suggested discussing adding Aceon (Perindopril), an ACE Inhibitor to help guard against stroke, with the Cardiologist. If the Cardiologist agrees, Dr can give us some samples for her to try, before prescribing it. Dr reviewed stroke risks and prescribed a homocysteine test – homocysteine should be <10; elevated levels injure arterial walls, narrows blood vessels and increases risk of blood clots. Dr might contact the Cardiologist and Rheumatologist to discuss Pearl’s status and proposed therapy – Dr thinks it is urgent that Pearl use an Internist to coordinate and manage her specialists. He cautioned that we call 911 immediately if signs of stroke occur in the future and get to the ER asap.

- Dr advised that Pearl’s shaky hands are due to elevated prednisone – not Neurontin. He would like to see Pearl stay on sustaining prednisone forever since it is good for her neck vertebrae condition. She would need several decades of Fosamax to restore the neck vertebrae. He thinks an ongoing level of 10 mg/day would be reasonable for her. I told him we are trying to drive it down to a GCA controlling level which may be between 8 and 10 mg/day. In the past the Rheumatologists have been trying to drive it to zero. Next visit: Mon, 2/16/04, 11:00 am.

1/15/04 – Started Prinivil, 5 mg, twice/day, today because systolic blood pressure has been above 140 last several times checked. In evening Pearl had choking instance, likely brought on by evening Prinivil pill. She took 5 mg 1/16/04 in AM but no more after that (caused phlegm and coughing). Will increase Toprol-XL to 50 mg (now 25 mg) tomorrow. Had Homocysteines measured today. Result: 12.3 which is normal, but over the target max level of 10 recommended by the American Heart Assn. Vitamins B6, B12 and Folic Acid are recommended to reduce homocysteines. Pearl started 400 mcg of Folic Acid 1/16/04 (this is additive to the 400 mcg contained in the Centrum Silver daily supplement she takes). We’ll discuss these items with the Cardiologist next Friday. Since Aceon (recommended by the Neurologist) is an ACE Inhibitor like Prinivil, it likely is not viable for Pearl because of her allergic reaction to Prinivil.

1/17/04 – Advised the Cardiologist (1pe17a04.doc; FAX) that Pearl increased Toprol-XL to 50 mg/day from 25; advised the Vascular Surgeon (1pe17b04.doc) that Pearl has discontinued Plavix permanently.

1/21/04Visit with the Orthopedist, Wed, 8:30 am. Status since last visit, 12/29/03:

  1. Plavix was stopped after concurrence of the Vascular Specialist. Restarting caused bleeding to begin again so it was stopped permanently.
  2. Blood test on 1/6/04 showed GCA/PMR inflammation is under control – C-rP was Negative and sed rate was 16. Pearl is taking 10 mg/day of prednisone now.
  3. The Neurologist reviewed the MRI report and films and advised that no medication or surgery is recommended. He would like to see Pearl continue with prednisone near the 10 mg/day level forever, to aid her deteriorated neck vertebrae. She’s had only one electrical shock since seeing him a month ago and that occurred when the upper arm was bleeding.
  4. The Neurologist’s main concern was stroke risk due to elevated platelets, the recent TIA (12/10/03), stopping Plavix and hypertension. He had her homocysteines measured – they are 12.3 (target level is 10). He wants to see her again 2/16/04 for follow-up of her stroke risk.
  5. Ref: Article 145. - J Rheumatol 2004 Jan; 31(1): 120-4. What are: Bilateral subacromial/subdeltoid bursitis; Glenohumeral synovitis; Biceps tenosynovitis? Any relation to Pearl’s right arm/shoulder?

Visit Notes: Dr viewed the MRI films, noting that spurs and vertebrae degradation affect both left and right arms. I gave Dr a history of PMR type problems Pearl’s had with left and right arms over the past few years (Arterit9.xl). Swelling in right upper arm has moved toward front, was facing center before. Dr noted the lump is hard and advised this is internal bleeding. He’s pleased she’s off Plavix. Suggested Lasix on occasion to see if blood pressure reduces, though he isn’t concerned if low number is in 70s (told him it’s been running about 145/75). He prescribed light physical therapy and suggested she return in 3 weeks. (App’t for therapy: 1/27/04, Tues, 9:00 am; bring list of Rx’s). I gave Dr a copy of current doctors Pearl is seeing – expect to see the Internist about 2/5/04. Next app’t: 2/11/04, Wed, 8:30 am.

1/22/04 – Vitamins C & E, review of history. Pearl started both on 8/20/99 at recommendation of the Rheumatologist on 7/22/99 to improve circulation – leg arteries had blocked in June, ’99, and heel ulcer was forming in right heel. Vitamin E was discontinued on 9/15/00 because it might be reducing effect of prednisone. Vitamin C was discontinued on 1/10/03 because it might be contributing to hives Pearl was experiencing. Both should be reconsidered because of value as antioxidant (E) and wound healing and risk of heart disease (C). Taken together there is evidence of warding off Alzheimer’s. Discuss with the Cardiologist.

1/23/04 – Visit with the Cardiologist, 11:00 am, Fri. Status since last visit, 12/16/03:

  1. Internal Bleeding: On 12/24/03 internal bleeding occurred in upper right arm, evidenced by large red raised welt under the skin; went to ER – diagnosis was internal trauma. Bleeding continued for 5 days; stopped Plavix and bleeding stopped. Visited Orthopedist, Vascular Specialist and Neurologist to evaluate the bleeding - and MRI of the upper arm and neck which was done before the bleeding started. Restarted Plavix on 1/6/04 on every other day basis since platelets were still elevated in blood test of 1/6/04. Stopped Plavix after two doses because internal bleeding reappeared. A hard lump in the upper arm during visit with the Orthopedist 1/21/04 was result of internal bleeding per the Orthopedist. The lump had changed from a different location on her arm a few days prior to the visit.
  2. Prednisone: Flare of GCA/PMR was recognized on 12/10/03 – increased prednisone to high levels caused Sed Rate and C-rP to return to normal (16 and Negative, respectively). Prednisone dosage now is at 10 mg/day – will continue at 10 for two more weeks and then check blood again.
  3. Stroke Risks: The Neurologist was visited to evaluate nerve pulses in right arm – he prescribed the MRIs done on 12/15/03. When visiting him on 1/14/04 for MRI results he became alarmed about Pearl’s risks for stroke due to TIA on 12/10/03, high blood pressure, and lack of Plavix.
  4. Homocysteines: Since Homocysteines is a risk factor for stroke he prescribed a blood test. (Result was 12.3 – which is above the target of 10 by the American Heart Ass’n). Pearl began Folic Acid supplement (400 mcg) on 1/16/04.
  5. Blood pressure: The Neurologist suggested Aceon, an ACE Inhibitor, to reduce Pearl’s blood pressure. He recommended discussing it with the Cardiologist before taking it. Pearl had been on another ACE Inhibitor, Prinivil, but stopped it last year due to its’ contribution to rash/hives. Pearl tried three doses of 5 mg each, morning and evening – stopped it due to restricting of her throat and hives. She increased Toprol-XL to 50 mg/day (was 25 mg/day) with no noticeable effect. On 1/21/04 she visited the Orthopedist for follow-up of right upper arm pain/bleeding problem and he suggested taking Lasix short term to get pressure down. Two Lasix pills have been taken to date – pressure averages 145/83, pulse 90; most recent (Thurs, 4:30pm) 138/70, pulse 84. Readings have been elevated since Dec.
  6. Vitamins C & E: Any benefit or objection to taking high doses of these?

Visit Notes: Wt. 152; Press. 120/70; Pulse 60. Dr isn’t concerned about homocysteine level of 12.3, but has no objection to Pearl taking Folic Acid. Blood pressure looks good – two days of Lasix may have brought it down, and slow reaction of Toprol-XL also may be a factor. Rx for increased Toprol-XL given (50 mg/day). If elevated pressure continues Dr would increase Norvasc as next step. Periodic use of Lasix also is OK. Dr agrees that Aceon (an ACE Inhibitor) should not be used because of Pearl’s reaction to Prinivil. Dr didn’t address Vitamin C. (Review of 1/9/03 visit notes with Gastroenterologist, after the visit, showed Pearl stopped because of possible detrimental effect on stomach). We advised Dr that current concern for Pearl is the pain and swelling of upper right arm, which has persisted since July, ’03. He said since it is merely a hematoma due to Plavix it isn’t a concern. Next app’t 3 months: Fri, 4/16/04, 11:00 am.

1/25/04 – Increased Norvasc to 7.5 mg/day; sent fax to the Cardiologist because Pearl’s pressure continues to be high in AM; started 7.5 mg/day on 1/24/04 and pressure was better (not to desired level yet but going in that direction). Asked the Cardiologist for Rx.

1/26/04Ophthalmologist – Mon, 10:00 am. Eye test: 30 +1 with and w/o pinholes; Press: 16R, 15L. Dr checked blood flow to her eyes via ICG technique – both eyes have better than typical blood flow; arteries are wide open. Dr suggested next visit in 6 to 8 weeks, or if eye problems develop. Appt: 4/2/04, Fri, 10:00 am (both Pearl and James).

1/27/04 – Physical therapy on shoulders, upper arms, 9 sessions (3/wk) – first session. Both upper arms are bothering Pearl at this time. Remaining sessions were: 1/29/04 - 2:00 pm; 1/30/04 – 9:00 am; 2/02/04 – 2:30 pm; 2/3/04 – 8:00 am; 2/5/04 – 2:00 pm; 2/10/04 – 10:00 am; 2/11/04 – 10:30 am; 2/13/04 – 10:00 am.

2/5/04Internist - Thurs, 9:00 am. Status since last visit (9/30/03):

  1. Prednisone now at 10 mg/day; a GCA/PMR flare was experienced 12/10/03 when momentary loss of vision in the one good eye occurred while shopping. Dose was increased to 60 mg/day at that time and tapered since. C-rP and Sed Rate were elevated during the flare at 21 mg/L and 32 respectively.
  2. MRIs were done on 12/15 and 12/18/03 of upper right arm, shoulder and neck, and eyes. All were OK except neck area shows degradation of vertebrae and disks. MRI of arm and neck was to diagnose cause of arm pain and occasional electrical shocks in arm. Pearl is now going to physical therapy for pain in both upper arms and neck.
  3. Pearl has been seen by these specialists since last visit: Nephrologist – kidney degradation; Orthopedist – upper rt arm pain; Ophthalmologist – momentary loss of vision; Rheumatologist – routine care of GCA/PMR; Neurologist – conductivity test of rt arm; Vascular Surgeon – evaluation of internal bleeding rt arm; and Cardiologist – elevated blood pressure. Aldosterone and Renin test done 10/22/03 – the Nephrologist is satisfied with results. Kidneys are OK after reviewing 11/13/03 test results where Creatinine was 1.4 and BUN normal (11/18/03 telecon).
  4. Pearl went to the ER on 12/14/03 for care of a large red welt that suddenly appeared on her right upper arm (diagnosis: internal bleeding from internal trauma, unknown cause). A week later after continued bleeding and total upper arm involvement she stopped Plavix.
  5. Homocysteine was measured at 12.3 on 1/15/04; the Cardiologist is satisfied with this but Pearl started Folic Acid (400 mcg/day) to reduce it more.
  6. Blood pressure has been running high, averaging 145/83. Pearl increased Norvasc from 5 to 7.5 mg/day, and increased Toprol-XL from 25 to 50 mg/day. She tried Prinivil but discontinued due to hives. She took Lasix for two days which was effective; periodic use of Lasix is OK with the Cardiologist.
  7. Neurontin, 100 mg/day, was started 10/21/03 at suggestion of the Nephrologist for legs ache.
  8. Rx needed for blood tests of CBC, CMP, Sed Rate and C-rP today. Last test was 1/6/04.

Visit Notes: Press. 150/82; pulse 72. Respiration 16. Wt. 152. Since pressure continues to be high increase Norvasc to 10 mg/day. Because pressure reduces to 115/60 later in the day, try Norvasc in AM and Toprol-XL in PM. Rx written for Norvasc, 10 mg/day. Rx also written for blood test (taken today at ORHC). Pneumonia shot given to Pearl since it has been over 5 years since last one – booster needed every 5 years. Dr thinks Vitamin E is overrated – Centrum type multivitamin is sufficient. Call Dr in one week to verify that he received blood test results. Advised Dr that Pearl tried Ultracet (10/19/03) and stopped due to tightness in chest after each pill and nausea. Next app’t in 4 to 6 months, as Pearl sees need, since she is seeing so many specialists.

2/5/04 – Blood Test, Thurs. Results (2/6/04): C-rP elevated at 1.5 mg/dL (was Negative 1/6/04); Sed Rate 22 (was 16 1/6/04); WBC 19.8 (highest since May ’01). Increased prednisone to 11.5 mg/day (was 10 mg).

2/10/04 – Leg Cramps occurred in both calves this afternoon – first time in several years. Increased prednisone to 15 mg/day and restarted Plavix, 75 mg pill every other day.

2/11/04The Orthopedist, Wed, 8:30 am. Status since last visit, 1/21/04:

  1. Physical Therapy hasn’t made a difference with Pearl’s shoulders and upper right arm. She’s had 7 sessions (two weeks +).
  2. Right arm has been swollen for several days from shoulder to wrist. Can there be a low grade infection present? WBC at 19.8 is highest it’s been since May ’01 – at that time she was given Zithromax for sore throat and WBC decreased. I don’t believe we’ve identified her arm/shoulder problem adequately yet.
  3. Blood test, 2/5/04, showed elevated C-rP (1.5mg/dL). This test and cramps in both calves 2/10/04 prompted increase in prednisone to 15 mg, and restart of Plavix.

Visit Notes: Copy of 2/5/04 blood test given to Dr – no comment; discuss elevated WBC with Internist.

Pearl advised she thinks GCA is flaring again. No comment. Dr checked range of motion in both arms, viewed swollen right arm – no comment. Gave Rx for increased (duration and intensity) physical therapy. I asked about lymphedema in her right arm, wondering about possible low grade infection, particularly because of the high WBC. He advised the type of lymphedema present is not due to infection. I asked him to feel her feet for pulse – he felt her right foot and found very weak pulse in front, but OK in rear artery. No comment. Next app’t 3/3/04, Wed, 10:00 am.

2/12/04Rheumatologist, Thurs, 11:00 am. Status since last visit, 11/14/03:

  1. Leg calves cramped 2/10/04 PM so increased prednisone to 15 mg/day (12 ½ in AM; 2 ½ in PM), and restarted Plavix, one pill every other day. Had been at 11 ½ mg/day since 2/5/04 blood test showed C-rP to be elevated at 1.5 mg/dL.
  2. WBC @ 19.8 in 2/5/04 test was highest since May ’01 – at that time Pearl had a sore throat and was given Zithromax. Copy of 2/5/04 blood test given to Dr today.
  3. Pearl is undergoing physical therapy for her right arm and both shoulders because of pain and swelling of right arm. She’s had 8 sessions to date and will have 10 more.
  4. Pearl saw the Neurologist for nerve conduction tests. He had an MRI done on neck and shoulders. Films showed excessive deterioration of neck vertebrae and disks; right arm/shoulder OK. The Neurologist in follow-up was mostly concerned about Pearl stopping Plavix (interfered with cessation of internal bleeding in right upper arm – ER diagnosed bleeding to be result of "internal trauma. The Neurologist was concerned about stroke risk due to elevated blood pressure and lack of Plavix. Follow-up with the Cardiologist resulted in increases of Norvasc and Toprol-XL. Blood pressure continues to be elevated (averages about 135/75).
  5. MRI done by the Ophthalmologist on eye orbits – results normal. No loss of vision after that momentary loss on 12/14/03.
  6. Request a "standing order" for blood test (C-rP & Sed Rate) to assist Pearl in managing GCA/PMR.

Visit Notes: Wt. 152; Press 136/78. Dr viewed Pearl’s swollen arm and evaluated motion in her arms. Dr reviewed the MRI scan reports of the Neurologist. He suggested Pearl have an MRI of the right shoulder – the MRIs done by the Neurologist covered only the shoulder area near the neck and the neck. Pearl said she thinks the shoulders pain is PMR but Dr doesn’t think so. Request a shoulder MRI from the Orthopedist. Dr felt for pulse in feet and concurred that pulse on upper part is weak. Pearl advised there is no discoloration on either heel in area of previous ulcers. Leg calves have been normal since increasing prednisone – they cramped only that one evening.

Dr agrees with current dosage of 15 mg/day – he said he is not concerned with Sed Rate as long as it is in the normal range. I advised that C-rP is above normal but he doesn’t seem to be as concerned about C-rP as Sed Rate. Check Sed Rate and C-rP in two weeks and if OK, reduce the prednisone – 12 ½ would be OK. He gave Pearl a standing order for blood tests to be done monthly. Next visit Tues, May 11, 11:15am.

2/16/04 The Neurologist, Mon, 11:00 am. Status since last visit, 1/14/04:

  1. Aceon, an Ace Inhibitor, can’t be used by Pearl. She tried Prinivil twice recently and developed choking and phlegm each time. The Cardiologist increased Toprol-XL to 50 mg/day (was 25) and Norvasc to 7.5 mg/day (was 5). The Internist later increased Norvasc to 10 mg/day. Pressure is averaging about 135/75 since the increase in prescriptions. High since increases has been 155/85; low 119/64.
  2. Homocysteines measured 12.3 in 1/15/04 test so Pearl started Folic Acid.
  3. Pearl increased Prednisone to 15 mg/day after leg calves cramped one evening and C-rP was found elevated at 1.5 mg/dl. She remains at 15 mg/day.
  4. Pearl started Plavix and stopped a few times – each time the right arm indicated renewed internal bleeding. She started Plavix every other day again recently.
  5. Pearl is undergoing physical therapy for her shoulders (tendonitis) – she’s had 9 sessions and is scheduled for 9 more. The shoulders still ache; entire right arm is swollen but not discolored. The Rheumatologist recommended an MRI to see what’s going on in the right shoulder but deferred to the Neurologist or the Orthopedist to prescribe it.
  6. Pearl had a fibroid cyst drained from her right breast on 2/3/04 – fluid was normal, no pathology analysis was needed.

Visit Notes: Wt. 152; Press: 140/78, Pulse 88. Copy of the 2/5/04 blood test was given to Dr. He thinks Toprol-XL can be increased above 50 mg to achieve desired blood pressure. Homocysteines are normal so Dr advised nothing need be done to reduce it. Stay at 15 mg/day of prednisone until C-rP and Sed Rate are normal, and clinical symptoms aren’t present. Pearl is likely to have to stay at 10 to 15 mg to maintain control for a long time. No comment about items 4,5 & 6. Next app’t 4 mos. – 6/7/04, 2:30 pm.

2/16/04 – Toprol-XL increased from 50 to 75 mg/day to try to get blood pressure nearer to target. Norvasc was increased to 10 mg/day on 2/7/04. Toprol was increased 1/16/04 to 50 mg. Benefit of dose changes should be fully effective within 7 days. Drug info states that up to 400 mg/day of Toprol is OK.

On 2/21/04 increased Toprol-XL to 100 mg/day since pressure still runs higher than target.

2/25/04 – Telecon with the Internist’s nurse today – fax follow-up message provided:

"This will confirm items discussed today by Pearl with your nurse regarding Pearl’s blood test of 2/5/04, and provide additional information.

Pearl was taking 10 mg/day of prednisone at the time of the test, 2/5/04. She increased the prednisone to 11 ½ mg/day on 2/6/04 because of the elevated C-rP (1.5 mg/dL).

On 2/10/04 leg cramps occurred in both calves of Pearl’s legs for the first time in several years. Because of this and because of the elevated C-rP in the 2/5/04 test Pearl increased Prednisone to 15 mg/day, suspecting a flare of Giant Cell Arteritis. She also restarted Plavix, 75 mg, every other day.

On 2/12/04 she visited the Rheumatologist for her scheduled app’t. He agreed with the increase in the prednisone. Dr also felt pulse in both feet and advised it was weak on the upper part. No indication was present of discoloration that had accompanied weak pulse in feet several years earlier when heel ulcers occurred. Leg calf cramps haven’t recurred since increasing prednisone to 15. His advice: Check Sed Rate and C-rP in two weeks and reduce prednisone to 12 ½ if OK. Rx given for test of Sed Rate, C-rP, CMP and CBC.

WBC was elevated at 19.8, highest since May ’01, but not of concern to the Rheumatologist. There is no apparent cause for the high WBC. Platelets, while elevated at 514, historically are not of concern the Rheumatologist – he expects platelets will return to normal when off of prednisone and GCA is in remission.

Pearl reduced Prednisone to 12 ½ yesterday and plans to have the blood test on or before 3/5/04. When she was at 12 ½ on 1/5/04 her blood test showed Negative C-rP and Sed Rate at 16 so we expect similar results in this next test.

Pearl stopped Plavix on 2/23/04 due to bleeding and easy bruising under the skin."

2/26/04 – Blood Test. C-rP 2.3 (was 1.5 on 2/5/04); Sed Rate 12 (was 22).

3/1/04 – The Nephrologist, Mon, 12:30 pm. Status since last visit, 10/17/03:

  1. Pearl has had indications of a flare of Giant Cell Arteritis and Polymyalgia Rheumatica on 12/10/03 so increased prednisone to 60 mg/day to protect eyesight in good eye. She since has tapered down and is at 12 ½ mg/day now.
  2. Her shoulders have rotator cuff tendonitis and bursitis – she is getting physical therapy for that but 15 sessions to date haven’t helped. She went to the ER for internal bleeding in right upper arm 12/24/03; stopped taking Plavix as a result.
  3. Blood pressure increased probably as a result of increasing prednisone. Increased Toprol-XL (@100 mg – was 25) and Norvasc (@10 mg – was 5) to regain control.
  4. Neurontin dose is 100 mg/day. Pearl tried 200 mg but got tightness in her chest. She continues to drink tonic water but not as much as before Neurontin.
  5. BUN was elevated in 2/26/04 test @ 28. In earlier tests it was 22 (11/14/03), 26 (1/6/04), 25 (2/5/04).

Creatinine was elevated 2/26/04 @ 1.5. Earlier it was 1.4 (11/14/03 & 1/6/04), 1.5 (2/5/04).

Visit Notes: Wt: 153; Press 118/62. Dr questioned why we were there – informed him that his office called telling us we had an app’t, 4 month follow-up. Dr advised that Pearl’s Creatinine and BUN were fine, she is OK, and there is no need to see him. Pearl asked for an Rx for a diuretic. Dr noted that Lasix increases Creatinine so prescribed HCTZ and cautioned to take only once or twice a week as needed. We reviewed medical info on HCTZ at home and found it shouldn’t be taken by people allergic to sulfa. We also found that Pearl has refills of Lasix available from Rx by the Cardiologist.

3/3/04The Orthopedist, Wed. 10:00 am. Status since last visit, 2/11/04:

  1. After 17 visits for physical therapy Pearl’s shoulders and right arm aren’t improved – 1 remaining. Report from therapist was hand carried to Dr today.
  2. The Rheumatologist recommended an MRI be done to determine what’s happening in upper right arm/shoulder.

Visit Notes: Dr observed that Pearl still has difficulty and pain in raising her right arm sidewords, and noted that additional steroid injection would not be beneficial. Dr asked if Pearl would want to have athroscopic surgery done to her right shoulder if an MRI were to show a problem. She advised she is concerned about presence of inflammation and the need to avoid surgery when inflammation is present. I advised that this concern is aimed at repair of inflamed arteries, not muscular tissue. She agreed to proceed with an MRI with the potential for surgery after. The MRI facility will contact us in the next two days for an app’t. Set up an app’t with the Orthopedist after the MRI – contact the nurse in the Orthopedist’s office the day before to be sure the MRI films were delivered there. Tell the MRI facility that Dr wants to see the films as well as the report. Tomorrow is Pearl’s last scheduled physical therapy visit – ask the therapist to set up a home program for Pearl to follow-up. Exercise is good for her, but not when it’s painful. MRI scheduled for Thurs, 3/4/03, 2:45pm.

3/3/04 – Premarin. Fax (3pe3b04.doc) was sent to the Gynecologist today requesting instructions for tapering off of Premarin. FDA issued new guidelines recently after long-term test showed estrogen is not beneficial for heart problems and increase risk of stroke and breast cancer. One benefit is reducing bone loss. Pearl started one week off and three weeks on Premarin (.625mg) in accordance with recommendations for osteoporosis dosage in DrugsRx Website. Reply 3/4/04: one tab every other day for 3 wks; one tab every 3 days for 3 wks; then discontinue.

3/3/04 – Toprol-XL. Fax (3pe3a04.doc) sent to the Cardiologist today requesting Rx for 100 mg/day dose of Toprol-XL. This amount, plus 10 mg of Norvasc daily, is needed to keep blood pressure reasonable.

3/4/04 – MRI of upper right arm/shoulder done today, 2:45 pm. Film to the orthopedist by Mon., 3/8/04. App’t made with the Orthopedist for 3/9/04, Tues, 10:00am.

3/9/04 – Visit, the Orthopedist, 10:00 am, Tues. Rt. arm is still swollen, lump appeared between left shoulder and neck on top.

Visit Notes: Dr showed Pearl the MRI films and gave her a copy of the report. He noted she has serious deterioration of the right shoulder which might not be repairable. The MRI showed complete separation of the rotator cuff, dislocation of the shoulder, bone degeneration, inflammation and significant fluid buildup. He advised that he can give her cortisone injections every three months as desired – no app’t was made for follow-up. He gave her an injection in the left front shoulder which also has been aching the past few weeks. He recommended she see a surgeon specializing in hand surgery, but who also is very good at shoulder surgery. He suggested no heavy lifting or exercise. After the visit I sent the following message to the Rheumatologist, with copies to the Internist, Neurologist and Vascular Surgeon:

"Thank you for recommending the MRI of Pearl’s right shoulder in her last visit. It was done on 3/4/04 and the results were obtained today from the Orthopedist. Unfortunately the shoulder is dislocated, the tendons are torn and the bone is deteriorated. The Orthopedist thinks repair may not be possible but has referred her to a Surgeon, whom she will see on 4/12/04.

The Orthopedist gave her a cortisone injection in her left front shoulder to relieve pain there. You may recall that left shoulder pain started 1/19/02 - doppler scan on 3/7/02 showed "significant peripheral vascular disease in the left arm". A cortisone shot at that time was ineffective. In July, ‘02, left shoulder pain was eliminated temporarily by nitro pills. Pain continued thru September, ‘02 and then dissipated.

Her right shoulder dislocation evidently occurred 7/21/03 when she experienced the initial sharp pain in her right upper arm.

Pearl just started 11 mg/day of prednisone today (down from 12.5 mg).

She has an app’t with the Hematologist tomorrow to review her blood status - we’re concerned about the high WBC."

3/10/04Visit, Hematologist, Wed, 1:00 pm. We had concern about Pearl’s recent blood tests indicating high WBC. Also of concern was swelling of her right arm – we found yesterday after MRI that this was caused by a dislocated shoulder and torn ligament. Last visit with Hematologist was 5/21/03. Pearl is taking 11 mg of prednisone daily at this time. She had momentary loss of vision in her good eye in Dec., and leg calf cramps in February. Prednisone was increased to 60 mg/day and has been tapered since then. Vision and leg problems have not repeated. GCA and PMR are thought to be still active.

Visit Notes: Wt. 153; Press: 126/68; Pulse 75. Blood test (CBC) was done – results similar to test of 2/26/04. Dr advised Pearl that readings look as expected for her illness and prednisone dosage – no need to follow-up.

3/16/04 – The Internist: contacted Dr today to obtain Rx for Z-Pack (antibiotic) for Pearl – she’s been dizzy for two days, and has sore throat, sinus inflammation. The nurse advised that the Internist left the practice as of 2/29/04 – she offered no new doctor for Pearl to see.

3/16/04 - Vascular Surgeon, Doppler Scan, Tues, 10:00 am. Press: 132/70. Scan reflected no change from last couple of years – readings within .15 tolerance of measurement method. Dr was very pleased with results – no action recommended. Repeat scan next year – app’t 3/22/05, Tues, 10:00 am. Pearl asked for and received a Rx for Z-Pack since the Internist no longer is available for Pearl; started it today.

3/17/04 – The Neurologist, was visited today because Pearl’s dizziness continues. Press: 140/74. Pearl is on Z-Pack antibiotic – started two days ago; prednisone is 11 mg/day. She can walk very slowly but loses balance if walking faster. He checked eye motion’s effect on dizziness – she was uncomfortable moving her eye to follow his finger. She also was bothered by scenery passing by as we drove to the Dr’s office. Dr checked her ears and found wax in both partially obscuring the ear drums. No evidence of infection in her right ear which is painful. I advised Dr that the Rheumatologist had prescribed ear drops (Cortisporin) in Nov. ’00 and asked if Pearl should get a medication like that – no response. He advised that Pearl not remove the ear wax until after the current episode of pain is finished. I advised that 2/26/04 test showed C-rP elevated at 2.3, and Sed Rate normal at 12; next test 3/25/04, Thurs. He prescribed a balance test which will be done in the office on 4/5/04, Mon, 10:00 am. Follow up app’t Tues, 4/13/04, 10:30 am. Cancel the app’ts if dizziness leaves. He recommended several Internists.

3/22/04 – The Orthopedist, 3:45 pm, Mon. Pearl has acute pain in left shoulder, difficult to move. Requested app’t today with Dr in hopes of getting Xray of the left shoulder to determine cause.

Visit Notes:

Dr injected 80 mg medrol (double normal dose) in lower back of left shoulder where pain was greatest. He thinks the left shoulder is deteriorated similar to the right shoulder. I advised Dr that Pearl had similar symptoms with the left shoulder that started in Jan, ’02 – they continued for about 9 months and seemed to be helped by increased Prednisone and Nitro pills. The pain gradually dissipated until a couple of months ago – the 18 sessions of physical therapy likely exacerbated the condition. Dr doesn’t think it’s bursitis or tendonitis, rather torn ligaments. Next app’t in one week: Mon, 3/29/04, 3:00 pm.

3/23/04 – Zithromax (Z-Pack) finished two days ago; dizziness returned after. Made app’t with a new Internist for 3/24/04, Wed, 10:45 am.

3/24/04 – New Internist – first visit, 10:45 am, Wed. Pearl never smoked; is a non-drinker; other details:

  1. Dizziness in walking began 3/14/04. Z-Pack (Zithromax) prescribed at Pearl’s request by Vascular Specialist during visit 3/16/04. Dizziness now occurs just when rising from prone position.
  2. MRI of right shoulder done on 3/4/04 (Rx by Orthopedist) showed four separated ligaments and dislocation. Pearl will see a Surgeon on 4/12/04 for surgery options. Right shoulder pain started in July, 2003.
  3. Left shoulder began aching before 18 sessions of physical therapy for right shoulder started Jan, ’04. Injections of Medrol were given in left shoulder 3/9/04 and 3/22/04. Likely some ligaments are torn. Similar left shoulder pain started earlier in Jan ’02 and dissipated after about 9 months – elevated Prednisone and Nitro pills may have helped.
  4. Giant Cell Arteritis (GCA) and Polymyalgia Rheumatica (PMR) started 12/98 (confirmed by positive temporal artery biopsy) and continue to be active. Vision lost in right eye before diagnosis was made. Prednisone is managed by a Rheumatologist - dose currently is 11 mg/day because C-reactive Protein (C-rP) was elevated at 2.3 mg/dl when last measured (2/26/04). Sed Rate also is monitored – it was normal in last test. Prednisone had been at the 5 mg level for several months last year but momentary loss of vision in left (good) eye occurred in Dec. ’03 so the Ophthalmologist increased Prednisone to 60 mg/day and Pearl has been tapering since then.
  5. High Blood Pressure started secondary to high prednisone therapy in ’99. Angina has occurred periodically over the past several years of therapy. Both are being managed by a Cardiologist. A Nitro patch, .4 mg/hr, is being worn for 14 hours daily. Angiogram done 2/13/03 showed all heart and kidney arteries are wide open. Carotid arteries are wide open.
  6. Leg arteries have several main artery blockages due to GCA; these occurred in ’99. Collaterals have formed since so circulation to legs and feet is good. Most recent doppler scan was done 3/16/04 and was favorable.
  7. Allergies and Asthma have affected Pearl for many years – they are managed by an Allergist.
  8. Breast cysts were aspirated recently by a Breast Surgeon; Pearl is monitored by a Gynecologist. The cysts, like those in earlier years, were fibroid, non-cancerous.
  9. Lists are attached: Physicians & Pharmacies; Medications & Allergies; Tests since 1998.

Visit Notes: Press: 122/60; Pulse 88; Wt. 153. Dr interned at hospital in Philadelphia, PA – spent time in Rheumatology Dept. and is familiar with GCA. We noted Pearl’s difficulties with extended prednisone and our desire to reduce it – raised question about injected Methotrexate and Infliximab as alternative therapies. Dr will look into what’s available, if anything. We advised Dr that our intent is to contact him when Pearl has needs not being addressed by the Specialists she sees. He recommended his website to facilitate contact for Rx’s or other info if desired. Since Pearl seems to be getting better (dizziness) Dr suggests not renewing the Rx for Z-Pack, but contact him if it comes back – one refill is OK if needed. Discussed tapering Premarin – Pearl restarted Premarin after attempt to reduce to 1 every three days caused hot flashes. Dr suggested that if it is doing some good for her it might be helpful to keep taking it – extra benefit is reduction of bone loss; risk of stroke is small. Dr will be moving to new office 4/5/04:. Next app’t 6/23/04, Wed., 11:00 am.

3/25/04 – Blood test done today. Sed Rate increased from 12 to 26 (normal); C-rP decreased from 2.3 to 1.6 mg/dl (elevated). Copy Faxed to Internist 3/26/04. BUN @ 33 is the highest it has ever been. Pearl has been taking 4 Darvocet pills/day recently due to excessive pain in both shoulders – this likely is the cause of the high BUN (kidneys getting buildup of acetaminophen).

3/26/04 – Faxes to Internist and Rheumatologist, were sent today: request for Rx for Zithromax to the Internist because dizziness is getting worse; update of Pearl’s status sent to the Rheumatologist. Pearl started Zithromax today – dizziness immediately improved. Pearl also took 3 Nitro pills at about 6:00 am due to throat and upper chest pains – pain left. The Rheumatologist advised that Pearl remain at 11 mg/day of prednisone after reviewing 3/25/04 blood test.

3/29/04 – Orthopedist, Mon., 3:00pm. Dr examined Pearl’s left shoulder area – it has been continuously painful, even more so than the right shoulder in the past few weeks. The injection of steroid last week provided comfort for about an hour, indicating the anesthetic provided relief rather than the steroid. I asked if Pearl’s symptoms might reflect avascular necrosis – Dr advised it could be since she was on prednisone for so long. Pearl described numbness in her hands at times. Dr took X-rays – they showed severe joint deterioration, namely: loss of cartilage between the humerus and socket causing bone to bone contact; loss of ½" gap at top between humerus and acromion indicating loss of rotator cuff ligaments and bone to bone contact, and shoulder dislocation; and avascular necrosis on top ½" of humerus. Dr. prescribed an MRI and nerve conduction tests of left arm. We are to contact the Neurologist for the nerve tests (EMG, NCI). Neuro-Skeletal Imaging will contact Pearl for MRI app’t. Dr wrote Rx for Darvocet-100, 60 pills, 5 refills. Pearl has been taking 4/day for shoulders pain. Showed copy of blood test of 3/25/04 in which BUN is at 33. He suggested Pearl minimize intake of Darvocet to extent possible. He recommended Ultracet if she can tolerate it – it is stronger than Darvocet and has about half the acetaminophen which is what raises Creatinine and BUN (kidneys and liver). Numbers so far are not alarming but increasing which is a bad trend. Ultracet can be taken for acute pain as much as two at a time, 6 hours apart (literature advises 2 every 12 hours max with kidney/liver clearance problems). Next app’t: 4/7/04, 10:45 am.

3/31/04 – Nephrologist’s nurse called to advise that Dr reviewed Pearl’s creatinine and BUN levels from 3/25/04 test and says readings are OK – no concern. I had faxed the results to him earlier.

4/1/04 – Faxes to Rheumatologist and Internist advising of Pearl’s degenerated left shoulder and follow-up.

4/1/04Neurologist – app’t made for 4/14/04, Wed, 10:00 am for EMG and Nerve Conduction studies of both arms.

4/1/04 – MRI, 2:20 pm, Thurs, left shoulder, done at Neuro Skeletal Imaging.

4/7/04Orthopedist, Wed 10:45 am. Visit notes: Dr reviewed the MRI films and report with us and was pessimistic about surgical repair/replacement. The left shoulder degeneration appears to be very similar to the right shoulder, except a bone spur is present in the left. Pearl will be seeing the Surgeon on 4/12/04 – Orthopedist advised that the Surgeon could be useful in athroscopic debriding and cleaning the shoulder – he doesn’t do shoulder replacements, though a partner does. He retracted his diagnosis of Avascular Necrosis which he made upon viewing the X-rays last week – instead, he advised the joints reflect the aftermath of severe arthritic degeneration, based on MRI evidence. He is anxious for Pearl to get the conductivity study by the Neurologist (next Wed.). We may get a 2nd opinion from Dr’s partner after seeing the Surgeon. We advised Dr that Pearl is having bouts of acute pain with her left shoulder. She continues to take 2 Darvocet N100 pills/day and 2 Ultracet/day. Next app’t: 4/28/04, 10:45 am, Wed.

4/12/04Hand Surgeon, Mon, 7:00 am. Background:

  1. Pearl has had Giant Cell Arteritis (GCA) and Polymyalgia Rheumatica (PMR) since 12/98. She lost vision permanently in her right eye before diagnosis. Leg artery blockages developed in several main arteries in both legs in June ’99 due to GCA inflammation. She has been on high doses of prednisone since diagnosis (12/98) – now she is taking 11 mg/day of prednisone to control GCA.
  2. In January of ’02 acute pain developed in her left shoulder/arm – this lasted for about 9 months. It became acute again in January ’04 and continues to be with motion. An MRI was done on 4/1/04.
  3. In July of ’03 acute pain developed in her right upper arm and moved to her shoulder; it continues to be painful when used. The Orthopedist has been treating her shoulders since July, ’03. He gave her several steroid injections and prescribed physical therapy which started in January, ’04 and lasted for 18 sessions. The MRI was done on her right shoulder on 3/4/04.
  4. Pearl was taking Plavix from April ‘00 until internal bleeding occurred in her upper right arm for five days in Dec. ’03. Suspected cause of bleeding was internal trauma, likely due to shoulder dislocation.
  5. Surgical options and recommendations are desired for both left and right shoulders. MRI films and reports are available.

Visit Notes: Dr said both shoulders were equally bad, the right being the worse of the two. He said the rotator cuff muscles cannot be reattached - all that can be done is try to mitigate pain. He injected Triamcinolone (a corticosteroid) in her left shoulder - can't do them both at once because the medication is too strong. She will see him next week again to see what her reaction was to the injection. If successful, injections can be given 3 times/year. Triamcinolone lasts much longer than Medrol – Medrol was used by the Orthopedist in some of his injections since July, ’03. We don’t know if he used Triamcinolone in any. (Review of our notes showed that the Rheumatologist injected Pearl’s left shoulder in Feb. ’02 with Triamcinolone, 60 mg). If injections don't help, surgery is an option, though undesirable because of her illnesses. Surgery would entail complete joint replacement - this would be just for pain alleviation because muscles wouldn't be reattached. Arm motion would be limited to shoulder height. She is to move her arms to keep them limber, but not do any weight bearing activities. Osteoarthritis is present – this and the damaged rotator cuff are a result of PMR. Place cold packs on the shoulder to reduce inflammation – prednisone at 11 mg/day also should be good for reducing inflammation. We noted that her shoulders feel warm sometimes - he advised that is inflammation. I asked about the reverse ball socket procedure being done by the Clinic – he advised that is for people whose rotator cuff muscles are intact, not for consideration by Pearl. Recent tears can be fixed but not old ones. Next app’t: Tues, 4/20/04, 5:15 pm, Altamonte Springs Office.

4/12/04 – Internist, 9:00 am. Pearl saw Dr today because of increasing bronchitis-like coughing that started several days ago. Dr listened to her chest and determined little involvement yet, but prescribed another dose of Zithromax, with a refill if necessary, to try to stop the progression if possible. He also prescribed Pertussin AC (with codeine) to help her sleep at night. Next app’t: 6/23/04, 11:00 am, Wed.

4/13/04 – Sent E-mail to the Clinic Rheumatologist to brief him on Pearl’s shoulder problems and the Surgeon’s advice.

4/16/04The Cardiologist, Fri, 11:00 am. Status since last visit:

  1. MRIs done on both right and left shoulders show rotator cuffs are completely torn and humerus bones are dislocated from sockets. The Orthopedic Surgeon said they reflect Polymyalgia Rheumatica rotator cuff tendonitis tears and can’t be repaired. He injected Triamcinolone for pain relief. If Triamcinolone is ineffective joint replacement could be done but it is very risky for Pearl.
  2. Pearl is taking 11 mg of prednisone – C-rP was 1.6 mg/dl and Sed Rate was 26 in last test (3/25/04).
  3. Pearl is taking Plavix two days/week.
  4. Blood pressure is averaging 120/65 since increasing Toprol-XL to 100 mg/day and Norvasc to 10 mg.
  5. Need Rx for Minitran Nitro Patch, .4mg/hr, for Canada Rx.
  6. Pearl has a new Internist.

Visit Notes: Press. 102/62; Pulse 94. Pearl’s heart continues to function well. Dr advised surgery shouldn’t be done – instead he recommends a nerve block to be done by a Pain Specialist. Continue medications currently being taken in current doses. Rx was written for Minitran. Next app’t: Fri, 7/9/04, 11:00 am.

4/16/04Internist, Fri, 1:15 pm. Combivent inhaler sample given to Pearl – replaces Albuterol but includes the Albuterol medication. Pearl’s lungs continue to sound good, no fluid – problem appears to be lots of congestion in the throat. Don’t take cough med to suppress the coughing – it is good to get rid of the phlegm. Pertussin AC is OK to use. Continue with next refill of Zithromax. Dr doesn’t know if the cough is due to allergies or virus but it is safer for Pearl to take the antibiotic in the 2% chance it is bacterial. Her temperature was down to 98.0 last night and this morning – a sign to us that yesterday may have been the turning point and improvement is underway. Dr advised that in Pearl’s case body temperature is not significant because of inflammation’s effect on body temperature.

4/20/04Orthopedic Surgeon, Tues, 5:15 pm. Pearl’s left shoulder feels better since the injection last week.

History - Right Shoulder Area Injections

7/23/03 – Cortisone (Medrol) injection right shoulder, by Orthopedist

10/17/03 – Two injections (80 mg) of Cortisone in right shoulder and neck areas

11/13/03 – Triamcinolone (60 mg) injection in right shoulder, by Rheumatologist

12/29/03 – Cortisone injection in right shoulder, front, by Orthopedist

History - Left Shoulder Area Injections

2/12/02 – Cortisone injection left shoulder, by Rheumatologist

3/9/04 – Cortisone injection left shoulder, front, by Orthopedist

3/22/04 – Double Cortisone injection (80 mg) left shoulder, back, by Orthopedist

4/12/04 – Triamcinolone injection left shoulder, front, by Orthopedic Surgeon

Visit Notes: Dr moved both of Pearl’s arms through complete normal range of motion – some pain was present in some locations. He gave her an injection of Triamcinolone in her right front shoulder – 18 mg. He advised that athroscopic surgery to clean out the shoulder joint, remove bone spurs or cyst, was not recommended – that type of surgery is no longer practiced because it was found to make matters worse in most cases. We questioned the desirability of Nerve Block by a Pain Management Neurologist – he advised that this is a short term pain relief tool (12 to 24 hours) and during that time there is possibility of lung decrement which would be an undesirable risk for Pearl because of her asthma. Dr didn’t schedule a return visit – he will forward his observations to the Rheumatologist. The Orthopedic Surgeon will be available in the future should Pearl need further injections (corticosteroid injections can be administered every four months as needed).

4/22/04 – Blood test today – results: Sed Rate increased to 36 mm/hr (was 26 on 3/25/04); C-rP decreased to 1.4 mg/dl (was 1.6); the condition of her blood when drawn for the test was unusually watery and light orange in color, causing the nurse doing the test to take notice. Her RBC, HGB, Lymphocytes, Monocytes and Albumin are significantly low and Neutrophils and Neut Absolute are high.

Pearl’s current continuous coughing may be due to a flare of Giant Cell Arteritis (GCA) or Polymyalgia Rheumatica (PMR). The following clinical symptoms she is experiencing are typical indicators of GCA:

  1. Persistent cough (bronchitis) for the past two weeks that hasn’t responded to two consecutive courses of Zithromax (Z-Pak) – she completed the second course today.
  2. Low grade fever – temp has been fluctuating between 97.2 (normal for Pearl) to 98.5 degrees F. The cough and elevated temperature are unusual for Pearl.
  3. Sore throat and headache over right eye, near temple, began today.
  4. C-rP is elevated and Sed Rate, while in the normal range, is also elevated from the last test.

4/23/04 – Rheumatologist suggested increasing prednisone to 12 mg/day based on C-rP and Sed Rate. Because of the possibility of flare we increased it to 15 mg/day after notifying Dr of her symptoms.

4/23/04 - Internist gave Pearl a refill of the Robitussin AC because of on-going coughing. Later (ref. Telecon 4/26/04) he identified her ailment to be bronchial spasm. Dr wasn’t concerned about the out-of-limit blood test items listed above. He advised that should her temp reach 99.5 he would get a chest Xray to check for pneumonia.

4/27/04 – Chronic coughing finally stopped but low grade fever persists (98.3 today) – Pearl had increased prednisone to 15 mg/day 4/23/04 after getting blood test results. She’ll continue at that level until all signs of flare are gone. Update 4/30/04 – coughing stopped, temp normal; reduced prednisone to 13 ½ mg/day today. Also sent an E-mail to the Clinic Rheumatologist with 4pe28a04.doc (letter to the Nephrologist) attached.

 

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