Appendix 7 – Ref. Chapter 7 - Expanding Management Tools

Events and Drs’ visits from 3/30/00 - 6/7/00, 9/8/00 - 1/27/01, and 7/21/04 - 8/11/04

3/30/00 - Visit with remote Clinic Rheumatologist, Thurs, 9:00 am – Letter 3pe8a0.doc was used as the basis for discussion of Pearl’s current conditions, namely: Temporal Arteritis & Polymyalgia Rheumatica; Vasculitis (Peripheral Arterial Disease of legs and feet); and Chronic Sinusitis. Dr specialized in Temporal Arteritis for several years so was interested in Pearl’s case. He made several immediate observations. He will send a report of the visit and his observations to her rheumatologist and to Pearl. He also requested these items be Fed Expressed to him ASAP to help in his assessment: Films of Arteriogram done on 7/12/99 at the Hospital; and Slides of Temporal Artery Biopsy done on 12/16/98. He had photos taken of both of Pearl’s feet.

Dr’s initial observations during Pearl’s visit:

  1. Condition likely is an arteritic inflammatory process in addition to an underlying atherosclerotic narrowing of the leg arteries.
  2. Ulceration of the heel reflects impaired blood circulation likely due to small clots (embolic platelet clots) in the arteries/arterioles.
  3. Atherosclerosis doesn’t appear to be the sole cause since typically with atherosclerosis circulation doesn’t improve like it has with Pearl’s legs and feet (cessation of cramps when walking several blocks). Rapid changes in circulation indicate inflammation.
  4. Prednisone is the drug of choice for Pearl – she seems to need higher doses than normal to get and keep the inflammation under control. It is desirable to minimize dosage, but control of inflammation is the primary objective. There is no need for special medicines to target and kill giant cells only – prednisone does that.
  5. Three criteria should be used to monitor control of the disease: C-Reactive Protein, Sed Rate and Pearl’s symptoms.
  6. Dr suggests prednisone continue at 15 Mg/day for 2 months, then 12 ½ for 2 months, then 10 for 2 months, then reduce by 1/month depending on the 3 criteria. He advised that taking 20 Mg/day for 5 days wasn’t long enough to make a difference – since she’s at 15 now stay there.
  7. After discussion with a Clinic vascular surgeon Dr advised: (1) Stop Trental; (2) Continue Pletal; (3) Start Plavix, an anti-platelet clotting drug that acts like aspirin (he would prefer aspirin if Pearl weren’t allergic to it). Prescription for Plavix written for 1 year – 75 Mg; 1/day.
  8. Hemoglobin would be an item of interest to add to the History Chart (Excel – Arterit9.xls).
  9. Don’t bother with Sinusitis investigation now – inflammation went away in January without doing anything special. Earlier occurrence was more than a year before.
  10. Dr doesn’t understand why liver biopsy and stomach CT scan were done after alkaline phosphatase returned to normal in December, ’98. Elevation of alkaline phosphatase obviously was due to Temporal Arteritis and PMR which had been confirmed by biopsy by that time.
  11. Dr doesn’t think Pearl will sustain deep tissue damage due to the impaired circulation. Surgical intervention may be needed someday – catheterization, balloon angioplasty, shunt, etc., but not now. Skin ulcer can be starvation of blood at skin surface during exertion, when large muscles have first priority for available blood going to legs and feet.
  12. Dr reviewed Pearl’s medications – no recommendations for changes other than Trental.
  13. Contact Dr if there is a significant change in Pearl’s status, or if we want further consultation He is intrigued by Pearl’s heel skin problems sufficiently that he may use her as a case study for a presentation in Buenos Aires in August. That manifestation (circulation deficit on heel skin) is unusual in cases of GCA and PMR.

3/31/00 - Follow-up upon returning home from visit with the Clinic Rheumatologist – Hospital was requested to send slides of temporal artery biopsy. Hospital furnished films of the arteriogram of 7/12/99 – these were sent via FedEx 3/31/00.

4/3/00 - Stopped Plavix after taking for 4 days - because of hemorrhages erupting under Pearl’s skin on both arms – about 12/arm ranging in size from 1/8 inch to 2 inches. Advised the Clinic Rheumatologist by fax (4pe3a0.doc). Pearl said she felt like circulation in her legs was better with the Plavix. Heel unchanged.

The Clinic Rheumatologist phoned back late 4/3/00 to recommend Pearl continue taking it – if the Ophthalmologist agrees it won’t hurt her left eye which has a hemorrhage. The Clinic Rheumatologist is concerned that maybe the platelets are too high. If she can’t take Plavix she may have to have chemotherapy to reduce the number of platelets.

The Clinic Rheumatologist is receptive to one Plavix tablet every other day. He received the arteriogram films but hasn’t reviewed them yet. Discuss Plavix with the Ophthalmologist 4/4/00.

4/4/00 - Restarted Plavix after one day omission – faxed the Ophthalmologist but didn’t get response. Pearl’s legs felt better when taking Plavix so she began again.

4/6/00 - Faxed the Clinic Rheumatologist about possible immune response to Lasix since Pearl is allergic to sulfa, some foods and some food colorings (4pe6a0.doc). E-mail response of 4/6/00 advised no problem expected from foods and colorings – sulfa allergy history questioned. Vasculitis first appeared in June ’99, two months after starting Lasix for slight edema.

4/10/00 - Received the Clinic Rheumatologist’s initial report of Pearl’s 3/30/00 visit to the Clinic dated 3/30/00. Will send back a few comments/corrections. Still awaiting his observations about biopsy and arteriogram.

4/10/00 – Visit with Rheumatologist, Mon. 3:15pm – Wt. 142; Pressure 150/80. Dr received the Clinic Rheumatologist’s report of 3/30/00. We discussed some highlights and some discrepancies. Started Plavix; stopped Trental. Pearl is at 15 mg/day of Prednisone – Report recommends 20 mg/day for two months. Pearl and I advised that the Clinic Rheumatologist agreed to stay at 15 for two months since she’s at that level. Dr will review sed rate and C-Reactive Protein reading from blood test to be taken today and decide if she should stay at 15 or go to 20. Our preference is 15 to avoid weakness – 15 was good enough last summer. Her heel ulcer is healing – discoloration remains - and she has no leg cramps. Pearl showed Dr her arms which have had internal hemorrhaging under the skin since the 4th day of Plavix.

We advised Dr that we’ve had no response from the Ophthalmologist about effect of Plavix on her left eye hemorrhage. We discussed Lasix and possible immune response if Pearl is allergic to it. He advised we discontinue the Lasix and Potassium just in case it is contributing to her vasculitis – Pearl has been taking Lasix daily. He’ll look into possible alternatives that don’t have a sulfa component. (Dr mentioned Lozol as a possibility but we researched it after and found it also contains sulfa). The Podiatrist recommended compression hose as a first step in treating leg/ankle edema. Dr faxed a prescription for Pepcid for Pearl to our insurance company – we’ve been trying to get a refill since 1/6/00 via the FPP’s and Vascular Surgeon’s offices without success due to red tape at the insurance company. Next app’t: Wed, 5/10/00, 3:00 pm.

4/11/00 - Visit with Wound Care, Tues., 11:30 am – Dr looked at Pearl’s ulcer on her left heel. It has closed to about 70% of dimensions two weeks ago. Continue same care – next app’t: Tues., 4/25, 11:30 am.

4/12/00 – Rheumatologist’s nurse called – C-Reactive Protein measured 1.2mg/dl which is high – increase Prednisone to 20 mg/day starting today. Remaining blood test info not in yet.

4/12/00 - Sent fax to the Clinic Rheumatologist with comments about three Impression Items in his report of 3/30/00 (ref 4pe12a0.doc).

4/13/00 - Stopped Trusopt since it contains sulfa (stopped Lasix for same reason on 4/10/00). Pearl has been taking Diamox/Trusopt on her own since 1/8/99 when the Ophthalmologist advised they could be discontinued unless Pearl thought they were doing her eye some good.

4/14/00 - Pearl went to the Hospital Emergency Room at 6:30 pm because of choking and difficulty breathing. She started to eat dinner and choked on the first couple of bites of toast and potato – roast beef dinner was spiced with Cumin and Thyme. Earlier in the day Pearl was exposed to bleach and strong perfume scents. X-ray showed no food in her throat and windpipe. Oxygen was 97% at her finger tip so she was getting air OK. Pressure on arrival was 172/82, pulse 118. After two hours of waiting she calmed down – pressure 153/83, pulse 84, Oxygen was 96% (normal ranges 96 to 100). Dr released her – thought she had an allergic reaction to something that caused spasm of throat muscles. Pearl was soothed by cough drops. Eat food in small chunks, take normal allergy/asthma medications. Pearl ate dinner at home – took cough medicine to help her throat and slept well.

4/20/00 – Warning bulletin issued for users of Plavix by New England Journal of Medicine - about potential serious bleeding. Concern is for Thrombic Thrombocytopenic Purpura, which developed in 11 users – one died. Corresponded via E-mail with the Clinic Rheumatologist and local Rheumatologist on 4/21/00 – the Clinic Rheumatologist recommended Pearl continue because of his serious concern for her leg vasculitis. The local Rheumatologist preferred she stop but deferred to the Clinic Rheumatologist’s instructions. The Clinic Rheumatologist requested slides of Pearl’s bone marrow test performed by the Hematologist on 12/17/98 – authorized the Hospital via fax to send them Fed Ex.

4/22/00 – Visit with Ophthalmologist, Sat, 11:15 am – due to the warning about Plavix we wanted to have Dr evaluate Pearl’s left (good) eye which had a hemorrhage in last two visits. Eye pressures: 14R, 13L (good). Dr has no opinion about Plavix regarding Pearl’s eyes. Hemorrhage is microscopic in size – if anything, her eyes would be helped by anti-clotting medication just based on general theory. He doesn’t expect Plavix to make any difference regarding her eyes. The hemorrhage is not of concern – it is located in the nerve fiber layer, not the optic layer. Re Pearl’s right eye: stop Trusopt because of potential sulfa contribution to inflammation (C-Reactive Protein was measured at 12 which indicates inflammation in system). Dr gave Pearl a sample of Alrex – use drops if needed for allergies, but no more than 2/day. Long-term heavy use of Alrex can be damaging. Pearl needs nerve regeneration in right eye to see – this still requires a medical breakthrough. Next app’t Sat, 5/20/00, 10:30 am.

4/25/00 – Visit to Wound Care, Tues., 11:30 am – Ulcer on left heel continues to heal – nurse picked off a film that was covering the ulcer. Continue with Biafine. Dr viewed Pearl’s discolored arms due to hemorrhaging under the skin – prescribed CBC blood test. (Results faxed to Pearl 4/26/00). Nurse took photos of Pearl’s arms in case we want to send to the Clinic Rheumatologist. Next app’t Thurs, 5/11/00, 11:00 am.

4/25/00 – Visit with the Cardiologist, Tues., 1:00 pm – Wt. 144lb; pressure 158/92, 100 bpm. Advised nurse Pearl stopped Lasix, potassium, Trental, Trusopt; started Plavix. Prednisone now @ 20 mg/day. Dr listened to Pearl’s heart – OK. Gave Dr 4/10/00 blood test report and memo advising Pearl’s status since last visit with Dr on 2/1/00. Dr viewed hemorrhage spots on Pearl’s arms – attributed them to prednisone and Plavix, not alarmed. Dr will give Pearl another stress test in September (year after initial one). Told Dr about Pearl’s visit to Emergency for choking last week – EKG and throat X-rays were taken at the hospital – both OK. Call Dr if any heart problems show up – next app’t 3 months: Tues., 7/18/00, 10:00 am.

4/27/00 – Visit with Internist, Thurs, 10:00 am – Wt. 147 lb.; pressure 180/100; pulse 100. Gave Dr a memo updating him about Pearl’s status since seeing him on 2/24/00. Showed Dr Pearl’s hemorrhaged arms which began several days after starting Plavix, prescribed by the Clinic Rheumatologist. Also showed him blood test results of 4/25/00 test – CBC data was not surprising – low lymphocytes indicate presence of inflammation. High WBC is expected with high prednisone which is at 20 mg/day now. Low neutrophils were not of concern. He liked the high platelets reading of 571. Pearl showed him her heel ulcer which is being cared for by the Wound Care Clinic – it looked to him like it was healing. He listened to her heart (chest and back), and felt and listened to her neck pulse. Pearl is off of Lasix and Potassium now, and Trusopt, because of their sulfa content. He had no other diuretic to recommend since all contain sulfa, and are hard on the kidneys. We told him of Pearl’s visit to the Hospital Emergency Room about a week ago for choking – which turned out to be a non-event. Pearl advised that the Clinic Rheumatologist is reviewing the slides of the temporal biopsy and the bone marrow test and will send us a report when his analysis is complete. Pearl offered to send Dr a copy of the report when received. Dr advised she is in good hands with Wound Care – no appointment was suggested, just call him when we have need for his services. He wrote prescriptions for Inderal LA (one for local and one for mail order).

5/10/00 - Visit with Rheumatologist, Wed, 3:00 pm – Pearl’s status since last visit with Dr on 4/10/00:

  1. Increased prednisone to 20 mg/day based on Rheumatologist’s call of 4/12/00 (high CRP).
  2. Stopped Trusopt eyedrop in right eye (damaged eye) because of Sulfa component.
  3. Went to Hospital Emergency Room 4/14/00, 6:30pm, due to choking and breathing difficulty – attributed to food allergy reaction – settled down after few hours, EKG OK, X-ray OK, released.
  4. Visited Ophthalmologist 4/22/00 – hemorrhage in left (good) eye is still present, is microscopic in size, not of concern. Gave Pearl Alrex eye drops when needed for allergies in right (damaged) eye.
  5. Visited Wound Care 4/25/00 – heel ulcer still healing (ulcer started 2/25/00). Prescribed CBC blood test because of hemorrhages under skin of arms due to Plavix.
  6. Visited Cardiologist 4/25/00 – no problems, come back in 3 months – will run stress test in September.
  7. Received prescription of Pepcid as a result of Dr’s help last visit – capped 3 months of effort.
  8. Need Plavix prescription for Mail Order – 90 day supply, 3 refills, 75 mg, 1/day

Visit Notes: Wt: 144, Pressure 150/72. Dr observed the skin hemorrhages on Pearl’s arms, noting they look better than last time. He felt for pulse in both feet and advised it hadn’t improved, thought her skin felt warm. He viewed the ulcer on her heel and noted it was healing. Pearl’s stamina and attitude are much more positive recently – don’t know why but it indicates she is feeling better. She hasn’t been able to walk much for the past 3 months due to the heel ulcer, but when she does walk short distances in the mall she gets no muscle cramping. We requested a prescription refill for Plavix for mail order. Dr prescribed a blood test today for sed rate and CrP. Will advise about Prednisone dosage after results are in. We haven’t gotten a final report from the Clinic Rheumatologist yet – he’s viewing slides of temporal artery biopsy and bone marrow test, and arteriogram of 7/11/99. Next Visit Wed, 6/7/00, 2:15 pm.

5/11/00 - Visit to Wound Care, Thurs, 11:00 am – Dr viewed the heel ulcer and determined it is almost completely healed – it measured 4mm x 4mm (last time it was 6mm x 7mm). Continue the Biafine ointment until completely healed. No need to return to Wound Care unless a problem develops. The nurse took a photo of the ulcer.

5/12/00 – Rheumatologist’s Nurse called to advise Pearl should reduce Prednisone to 15 mg/day – sed rate was 6, CrP was negative. Results faxed to Pearl this date.

5/20/00 – Visit with Ophthalmologist, Sat. 10:30 am – Pressures were normal at 15 & 15. Hemorrhage looks smaller in left eye. Blood flow to both eyes is good. Floaters in left eye probable cause of lightening type flashes seen at times. Pearl advised peripheral vision is worse in right eye – would like to start Trusopt again. Dr advised Timoptic would be the best eye drop (1drop/day) – suggested she try it and stop the Alrex. Pearl’s been taking about 2 drops/day of the Alrex. Dr advised concern about Plavix but said it’s not for him to decide – be cautious and keep the Rheumatologists informed of status. He thought the Clinic Rheumatologist should be questioned about taking both Pletal and Plavix since both are anti-clotting drugs. The Clinic Rheumatologist said stop Pletal, 5/22/00 (E-mail). Prednisone is now at 15 mg/day since Sed Rate and CrP were both favorable in last blood test (2 wks ago). CrP was elevated but has gone down to normal indicating no inflammation – this has been since Trusopt was stopped, but don’t know if Trusopt was cause because of it’s sulfa component. Took photos of both eyes. Next app’t: Sat, 6/17/00, 10:30 am.

5/22/00 – Requested CBC from Rheumatologist for Plavix monitoring – was 4 weeks since last test – should be monitored every one or two weeks for first 3 to 6 months of taking Plavix (similar to Ticlid). Results appear to be favorable. Copies were sent by Dr to the Internist and Pearl.

6/7/00 – Pearl’s status since last visit with Hematologist (3/6/00):

  1. Pearl visited The Clinic on 3/30/00 – was evaluated by the Clinic Rheumatologist. His initial observations during Pearl’s visit:
  1. Pearl’s arms developed bleeding under the skin 4/3/00 so she stopped Plavix. The Clinic Rheumatologist advised her on 4/4 to continue the Plavix despite the arm hemorrhages – she needs it to protect her from clotting.
  2. Blood test of 4/10/00 showed C-reactive Protein was high at 12; sed rate was 12. Prednisone was increased to 20mg/day.
  3. On 4/20/00 a warning was issued about Plavix in New England Journal of Medicine – 12 cases of Thrombic Thrombocytopenic Purpura occurred with people on Plavix, one died. The Clinic Rheumatologist advised Pearl should continue with the Plavix.
  4. Prednisone was reduced to 15 mg/day after blood test on 5/10/00 showed CRP was negative and sed rate was 6.
  5. CBC Test should be taken every 1 to 2 weeks for the first 3 months while Pearl is on Plavix (just as for Ticlid). CBC Test taken on 5/22/00 appears to show good results.
  6. Pearl’s left heel ulcer finally healed enough for her to wear shoes on 6/1/00.
  7. Since the last visit with the Hematologist Pearl was also seen by: Cardiologist, Rheumatologist, Internist, Wound Care Clinic, and Ophthalmologist.

Visit Notes:

Wt: 144, Bl Press 132/82, Pulse 80. CBC taken – results good – copy given to Pearl. Sed rate was 13. C-reactive Protein measurement won’t be available until next week. Discussed: Plavix and TTP; meaning of CBC blood test results and need for CBC every week or two; significance of hemoglobin measurement; Thrombocytopenia; Thrombocytosis; Churg-Strauss or Wegener’s granulomatosis. Hematologist prefers aspirin instead of Plavix, but Pearl’s allergic to aspirin. Dr thinks critical stage for Plavix reaction is past (first 3 months), but it really has only been a little over two months. Things to watch for with Plavix are: very low hemoglobin, very low platelets, red spots in mouth, red spots on trunk or legs, dementia, kidney or liver problems. The potential illnesses listed by the Clinic Rheumatologist (Thrombocytopenia, Thrombocytosis, Churg-Strauss or Wegener’s granulomatosis) are textbook illnesses – should not be of concern for Pearl. (CrP result received 6/9/00 – it is .73 which is still considered negative – under .8). Dr scheduled Pearl for a blood test in his office on 7/5/00 at 10:30, next app’t Wed, 8/2/00, 10:30 am.

6/7/00 - Visit with Rheumatologist, Wed, 2:15pm – Pressure 146/80. Gave Dr a copy of the blood test results from the Hematologist - Sed Rate was 13. Will Fax CRP result in a day or so (did so on 6/9/00 – CRP was .73, considered negative. Dr advised on 6/9/00 to maintain prednisone at 15 mg/day). Advised Dr that Pearl has been feeling very good and stronger this past week. Walked around the block for the first time a day ago. Brief walks in the Mall recently have been without discomfort. She hasn’t had calf muscle pain while walking since October last year. We reviewed doppler scan data of 7/7/99 with arteriogram data of 7/12/99 – on 7/7/99 her right leg is completely open, while her left leg shows obstructions in the arteries. On 7/12/99, 5 days later, her right leg is completely obstructed as the left leg was. We’ve been trying to get a copy of the doppler scan done in the hospital on 7/11/99 to see a direct comparison of doppler scans 4 days apart (we obtained a copy of the 7/11/99 test data on 6/9/00 and sent Dr a copy – see Arterit9.xls). The comparison of the doppler scan and arteriogram indicate inflammation rather than slow build up of arterial plaque. Her current ability to walk without claudication also indicates the problem has been inflammation. (On 6/8/00 Pearl spent several hours walking and standing while shopping, climbing stairs in two model homes – no unusual pain in legs or leg muscles.). Because of our concern about Plavix monitoring in first 3 months Dr gave Pearl a prescription for a CBC in two weeks. Next app’t 7/7/00, Fri, 1:15pm

9/8/00 – Blood test results Faxed to Pearl: Sed Rate 9; CRP 6 (marginal;<6 normal); Thyroid OK. Dr advised Pearl to maintain prednisone at 15 mg/day.

9/13/00 – Visit with Cardiologist’s P.A., Wed, 9:00 am:

  1. Results of Nuclear Stress Test done on 8/8/00 were good. Left ventricular ejection fraction is 52%, down from 63% in test 9/3/99 – desired lower limit is 55%, but people function as low as 15%. Copy of report was obtained (scanned and sent to the Rheumatologist for ref.). Copy of 9/3/99 test also obtained via Fax.
  2. Zestril vs. Norvasc - the PA advised Zestril and Norvasc are a good combination – each addresses different maladies, though they both lower blood pressure. Norvasc is needed to ensure good blood flow to critical organs (kidneys, liver).
  3. Blood pressure measured by the PA was very high at 210/100. She measured it 10 minutes later and it dropped to 190/90. Reviewed blood pressure readings since start of Norvasc on 8/1/00 – they average 137/77 with ranges of 163-113 Systolic and 88-66 Diastolic. As a result of the very high reading today the PA prescribed Norvasc be increased to 5 Mg/day from 2.5. Also wants to see Pearl in a month.
  4. The PA felt Pearl’s feet and found weak pulse in both ankles – she pressed on each large toe and found blood replenished within 2 seconds, indicating good blood circulation to the large toes. Pearl’s feet and ankles have prominent veins indicating improved circulation – this is different and a good sign. Pulse had not been evident in Pearl’s feet since last year.

Next app’t: Friday, 10/13/00, 10:15 am (Pearl wasn’t seen by the Cardiologist but the PA discussed her treatment plan with him during the visit and got his concurrence.)

9/15/00 – Rheumatologist advised via E-mail that Pearl can stop Vitamin E to see if it might allow reduction of prednisone dosage. She stopped Vitamin E today.

9/29/00 – Visit with Ophthalmologist, Fri. 10:30 am – Pearl began Norvasc to lower blood pressure on 8/1/00. Started at 2.5 mg/day, increased to 5 mg/day on 9/13/00. Still taking 15 mg/day of Prednisone. Legs generally ache but circulation has been adequate – legs felt better when at 20 mg/day. Sed Rate and CRP have been within normal limits last two months. Should Pearl consider taking Methotrexate with reduced Prednisone?

Pressures: R11, L13 (good). Examination of eyes indicated good health in both (except vision in right is nil – unchanged). We discussed Pearl’s Vasculitis and need for 15 Mg/day of Prednisone. Dr advised that Prednisone for Temporal Arteritis is taken for up to a year – after that it may be needed for other conditions, not for eyes. Prednisone dosage now is up to the Rheumatologist for Pearl’s problems other than eyes. He expressed general concern about Methotrexate – people taking this need constant follow-up for potentially lethal side-effects. He advised Norvasc is good medicine – expressed no concern about Pearl taking it. He advised that CRP is non-specific – don’t rely on the Sed Rate and CRP numbers for medicating. Next app’t: 2 months – 12/1/00, Fri,10:00 am.

10/2/00 – Visit with Rheumatologist, Mon. 10:15 am:

Visit Notes - Wt.: 147; Pressure: 148/74. Nurse reviewed Pearl’s current medications. Dr didn’t feel pulse in Pearl’s foot (checked only the left foot). High platelets are not of concern to Dr. Methotrexate is a viable alternative to the high doses of prednisone – it has no side effects, unlike prednisone. Follow-up would be the same as she is getting now. Sed Rate, CRP and CBC were measured – expect results tomorrow. Next app’t: Mon., 11/6/00, 10:15 am.

10/3/00 – Rheumatologist’s office called with results of blood test of 10/2/00: Sed Rate is high at 38; CRP is normal at .6. Review of faxed report showed Platelets also were high at 530. Dr. prescribed Methotrexate, to start Sunday 10/8/00 @ two pills weekly (take both on Sundays) – continue Prednisone at 15 mg/day. I asked Dr in subsequent fax about Azathioprine in place of Methotrexate – he advised he selected Methotrexate because it is less dangerous. Also, via E-mail I inquired about the flu shot for Pearl this year – Dr advised she should get it when it’s available.

10/13/00 – Visit with the Cardiologist, Fri, 2:45 pm: Status since last visit (9/13/00) –

Visit Notes - Wt: 147lb; Pressure: 130/70; 70 bpm. We expressed concern about change in "ejection fraction" in the recent Stress Test as compared to the 1999 Test. The reports indicate a degradation of 20%. The PA explained that an echocardiogram is needed to properly compare the ejection fractions and one wasn’t done in the recent test. The Stress Test data (excluding echo data) in both tests however both support an ejection fraction of about 60% which is very good – no degradation is evident despite what the report conclusions state. Pearl mentioned she had occasional pains in the center of her back – perhaps two per month. We discussed aortic aneurysm and association with Arteritis and Prednisone. Dr advised that Pearl needn’t worry about an aneurysm – he felt her chest to check for one and confirmed nothing is evident. Prednisone sometimes offers protection to arteries, especially after heart surgery – he advised that we not worry about either aneurysm or prednisone regarding cardiovascular impact. Pearl mentioned sweating with little or no exertion – the PA said this isn’t heart-related, it likely is a side effect of one of her many medications. Since her heart and pressure are looking good her next app’t is in 3 months – Jan. 5, 2001, 10:00am.

10/19/00 – Sed Rate Test done today at the Hosp, prescribed by the Rheumatologist, – results received 10/20/00 from Dr’s office. Sed Rate is 7 – Dr. recommended reducing Pearl’s prednisone to 12.5 mg/day starting today.

10/24/00 – Visit with the Dermatologist, Tues, 12:50 pm – Status since last visit (3/7/00):

  1. Ulcer on left heel, shown to Dr on 3/7/00, finally closed on 6/1/00 – Hospital Wound Care monitored it.
  2. Pearl visited the remote Clinic on 3/31/00 – Rheumatologist there recommended increase in Prednisone for longer time period to ensure inflammation is controlled. Also started Plavix to guard against blood clots. Arm skin is much more susceptible to bleeding under the skin since then.
  3. Cardiologist started Norvasc 8/1/00 to reduce blood pressure.
  4. Rheumatologist started Methotrexate 10/8/00 to reduce Prednisone eventually. Now at 12.5 Mg/day of Prednisone.
  5. Pearl generally feels better at this time – she’s been exercising daily in the pool. Circulation doesn’t seem critical at this time.
  6. Dr treated nose again where treated last year, and checked several moles on her back. He froze several small warts on her right leg and hand – these occur while on prednisone.
  7. Dr is allergic to perfume and requested that Pearl not wear any next time.

10/25/00 – Visit with Hematologist, Wed. 10:30 am – Pearl’s status since last visit, 8/2/00:

  1. Blood test on 8/3/00 - B12 is good; Triglycerides are high making Total Cholesterol high @ 203 (down from 206 of 4/10/00; Total/HDL ratio is good at 2.74.
  2. Started Methotrexate on 10/8/00 – 5 mg/week. Hoping to be able to reduce prednisone, now at 12.5 mg/day since 10/20/00.
  3. Platelets increased in Sep and Oct – last reading was 530 on 10/2/00.
  4. Norvasc was increased to 5 mg/day on 9/10/00 because of high blood pressure reading in Cardiologist’s office. Nuclear stress test on 8/8/00 by Cardiologist showed heart is good.
  5. Pearl generally feels better at this time – she’s been exercising daily in the pool. Leg circulation doesn’t seem critical for a change.

Visit Notes: Temp 96.7; Pulse: 80 bpm; Pressure: 160/80. Blood test today showed the typical out-of-tolerance conditions: WBC high at 13.8; Gran high at 10.1; RBC low at 3.73, MCV high at 101.9; MCH high at 33.0 and Platelets high at 506. Dr advised that all are consistent with her illness. He questioned her B-12 – we advised she has had no shots since the one he gave her initially in her illness (Jan, 1999), and her B-12 is consistently normal. Dr also tested Sed Rate and CRP (results Faxed later to us showed SR @ 17 and CRP @ 0.50 – both normal). Dr advised that since Pearl’s blood has been stable for the past year and a half he thinks she can stop seeing him until a future need arises. The Methotrexate dosage started recently by the Rheumatologist (5 mg/week) is a very low dose – he thinks she won’t have problems with that. Talk to the Rheumatologist about need for Folic Acid supplements. Watch for anemia. Dr would like Pearl to fax him copies of blood tests done in the future which he will monitor – also, she can phone him anytime for counsel and he can advise her over the phone. No appointment scheduled.

11/1/00 - Visit with FPP, Wed. 9:00 am – Pearl’s status since last visit (8/2/00):

  1. Nuclear Stress Test done by Cardiologist on 8/8/00 – results were good. Heart remains healthy.
  2. Norvasc increased to 5 mg/day from 2.5 - blood pressure was high in Cardiologist’s office 9/13/00.
  3. Rheumatologist stopped high daily dose of Vitamin E on 9/15/00 in hopes it might allow Prednisone reduction from 15 mg/day.
  4. Methotrexate started on 10/8/00 @ 5 mg/week – hoping to be able to reduce Prednisone – now at 12.5 mg/day.
  5. Visited Hematologist, 10/25/00 – blood tested, though several characteristics are out of limits, looks as expected – no need for further app’ts. Send him copies of blood tests for monitoring in the future – call anytime for phone counsel.
  6. Got flu shot 10/28/00.
  7. Generally feeling good and stronger – pool exercise daily seems to be helping legs circulation.

Visit Notes - Wt. 147; Temp 95.9; pressure 141/77. Dr thinks pressure should be lower – Allegra-D raises pressure and might not be needed while Pearl is on Prednisone. Allegra doesn’t affect blood pressure like "D" does. Discuss with Allergist in next visit (end of Nov.). Dr reviewed current list of Pearl’s medications – he would like to see her off of all allergy medications if possible. Pearl asked about what to take for migraines, should they occur – Dr advised try Fioricet, last resort would be Imitrex since it is a vasoconstrictor which would increase blood pressure. Dr is concerned about stroke due to high blood pressure and Imitrex would aggravate that. Pearl hasn’t had a migraine since being on Prednisone – she feels them start (headache for a couple of hours) but the migraine doesn’t occur. Pearl scraped her shin bone last week – scab looks like it is healing OK – clean with hydrogen peroxide, put a little Neosporin on it. Watch for redness/soreness/pus. Gave Dr a copy of Hematologist’s blood test of 10/25/00 – he noted platelets are high, can contribute to clotting. He asked about Vitamin B12 shots – Pearl has had only two, early in 1999 – none since – B12 level is good. Dr thinks Pearl is improving – parting words were to reduce/stop Allegra-D. Next visit in three months – 1/29/01, Mon, 10:00 am.

11/6/00 – Visit with Rheumatologist, Mon, 10:15 am – Status since last visit, 10/3/00:

  1. Cardiologist examined Pearl 10/13/00 and advised since heart and blood pressure are looking good he doesn’t need to see her for 3 months.
  2. Hematologist examined Pearl 10/25/00 and advised since her blood continues to look as expected for her condition he doesn’t need to see her again. Send him copies of blood tests and phone him for any concerns or counsel. Gave Dr a copy of the blood test of 10/25/00.
  3. Pearl got a flu shot on 10/28/00.
  4. Discuss continuation of Methotrexate for Giant Cell Arteritis - recent study indicates no benefit. Dr reviewed news item of 10/31/00 and decided to stop the Methotrexate. His experience was that it worked for patients in the past, but he defers to the research study findings by the Cleveland Clinic. If we find that Pearl was helped by the MTX we can put her back on it later.
  5. Revisit testing for Interleukin-6 (IL-6) to monitor disease activity (Ref: Mayo Clinic article 5/2000). Dr advised that we talk about this with blood test lab when we get Pearl’s blood test in two weeks. He thinks it isn’t available, and if it is Medicare won’t cover it. It will be expensive if not a standard test.
  6. Pearl’s legs continue to feel "good" – feet circulation may have improved a little this past month – senses more feeling and less sensitivity on bottom of her feet.
  7. Fosamax once a week? Wait until after next week when the once a week pill is put on the market.
  8. Blood test required: Sed Rate, CRP, CBC and Chem Profile? Prescription was given for Sed Rate and CRP to be done in two weeks.

Visit notes - Wt. 149; Pressure 138/72. Stop Methotrexate. Blood test in two weeks. Next app’t 12/20/00, Wed, 10:00 am – will measure bone density next visit.

11/20/00 – Sed rate and CrP Blood Test done at hospital lab. Inquiry about IL-6 test indicated it wasn’t on their list of available tests. Results: sed rate 10; CrP normal @ .6. Continue 12.5mg Pred.

11/27/00 – Visit with the Allergist, Mon, 2:30 pm. Brief overview of Pearl’s status since last visit, 11/29/99:

  1. Current prednisone dosage is 12.5 mg/day – had been up to 20 mg/day for several months.
  2. Had a foot ulcer (left heel) in March, 2000 – healed in 3 months.
  3. Visited a Clinic in March for second opinion about vasculitis and sinus problems – confirmed they are related to ongoing Giant Cell Arteritis and Polymyalgia Rheumatica.
  4. Cardiologist examined heart and conducted Nuclear Stress Test in October – results were good.
  5. New medications: Plavix, Norvasc.
  6. Medications stopped: Pletal, Trental, Lasix, Potassium.
  7. Refills needed: Albuterol, Allegra, Allegra-D, Flonase, Vanceril, Serevent.
  8. Primary Care Physician questioned the need for all current allergy medications while on high doses of prednisone.

Visit notes: Wt: 147; Pressure: 128/72; Pulse: 64. Stop Serevent, increase Flonase if required in place of the Serevent. Try dosing with Allegra and Allegra-D once every two days, alternating with one/day. Prescriptions written for Albuterol, Allegra, Allegra-D, Flonase and Vanceril. App’t in one year.

12/1/00, Visit with Ophthalmologist, Fri, 10:00 am – Status since last visit, 9/29/00:

  1. Prednisone is now at 12.5 mg/day – last CRP was borderline, and Sed Rate was normal (10).
  2. Pearl was on Methotrexate for 5 weeks, then learned it isn’t of benefit for Giant Cell Arteritis the Rheumatologist stopped it. Don’t know if it did any good while she was on it – takes up to 3 months to be effective.
  3. Blood pressure has been normal – still on Norvasc (5) and Zestril (10).
  4. No eye problems or changes since last visit.
  5. Nuclear Stress Test by Cardiologist indicates Pearl’s heart remains healthy. Legs circulation seems improved but pulse – though it can be felt – is not measurable yet.
  6. Hematologist advised Pearl in Oct. he doesn’t need to see her anymore – he requested that copies of blood tests be sent to him for his observation, and he’s available for telephone counsel anytime.

Visit Notes - Pressure: R 19; L 15. Left eye became blurry during vision test @ 60 acuity. Pearl advised Dr her right eye has been itchy, and flashes appear at times (like sparkling snowflakes). Examination showed slight tear on retina, which may account for the flashes. Dr laser tacked around the tear to prevent increased tearing. Next app’t in 6 weeks: 1/12/01, Friday @ 11:00 am.

12/20/00, Visit with Rheumatologist, Wed, 10:00 am – Status since last visit, 11/16/00:

  1. Pearl hasn’t been feeling as "good" after stopping the Methotrexate. Legs ache when standing – this wasn’t as bad before. Could this be the effect of the MTX taken for five weeks, or should we consider restarting the MTX? Ans: Since MTX might have done her some good, and it does good for others Dr recommends restarting it. Also, Pearl seems to have the start of Arthritis on her right hand knuckle, index finger – Methotrexate is good for arthritis. Dosage (5 mg/wk) is low.
  2. Fosamax once a week? Ans: Yes, prescription obtained.
  3. Bone density test today? Ans: Yes – results show significant reduction in density in hip bone – is 57; was 72 two years ago – losing avg of 10%/yr. Spine density showed increase but that is likely due to spine compression, not improvement. Dr wants to get prednisone down as low as possible as soon as possible to prevent further bone loss. When off prednisone the bone should rebuild.
  4. Can Pearl get a CBC and Chem Profile in addition to Sed Rate and CRP today? Would like to know what’s happening to her platelets. Ans: Yes – blood test done after visit.
  5. Darvocet prescription needed – 2/day, 90 days, 3 refills. OK.

Visit notes - Wt:149; Ht: 62 ½"; Pressure: 136/68. Next app’t: Wed, Jan 31, 2001, 9:45 am.

12/21/00 – Rheumatologist’s office called to advise Pearl to decrease Prednisone to 10 mg/day - take in AM. Sed Rate measured 10; CRP remains @ .6 mg/dl, same as last month. Report Faxed to Pearl – comparison with Hematologist’s test of 10/25/00: WBC is 16.7, was 13.8; RBC is 3.64, was 3.73; Platelets is 551, was 506. Copy forwarded to Hematologist. (Note: because CRP is positive Pearl decided to taper Prednisone by ½ mg every 5 days when starting Methotrexate (12/24/00), instead of dropping to 10 at once. This might give the MTX a chance to become effective in helping fight the inflammation.)

1/5/01 – Visit with Cardiologist, Fri, 10:00 am – Status since Pearl’s last visit, 10/13/00:

  1. Prednisone is at 11 mg/day, tapering down to 10. Methotrexate was stopped two months ago, but was restarted 12/24/00 in hopes of reducing prednisone. Bone density checked last month – 20% reduction found in hip bone since test of 12/98 when it was 80% of normal at start of prednisone.
  2. Blood Pressure average for last 3 mos is 128/70 (previous avg was 129/71, last visit).

Visit Notes - Wt: 148; Pressure: 150/88; Pulse: 70. I advised that pressure has been as low as 112/66 – Dr said it can go as low as 70/? and be OK. He expects the pressure to decrease as Prednisone is reduced. Dr said Pearl’s face looks more bloated – thinks she ought to get off prednisone as soon as possible. Wondered if we had considered going to another Clinic to see if other alternatives exist for reducing prednisone. Some patients have had success with plasmapheresis treatments –getting blood cleaned every three months. Next visit: Tues, 4/3/01, 10:00 am.

1/12/01 – Visit with Ophthalmologist, Fri, 11:00am. Press: R 17, L 16. Left Eye Vision test: 20/50 + 2 (Pin Hole). Eyes both look good. Took photos of both eyes. Next app’t: 3/16/03, 10:30 am, Fri.

7/21/04 – Cramps in left leg calf started 7/20/04. Pearl started Plavix yesterday because of leg cramp.

Prednisone continues at 10 mg/day. Pearl requested Triamcinolone cream Rx from the Internist in fax yesterday but he declined – she has been using it for the past 5 years or more, mainly on elbows.

7/22/04 – Blood test today. Pearl had a sleepless night, aching all over, cramps and numbness in left lower leg, and vertigo episodes. Increased steroids to equiv of 12 ½ mg of prednisone by adding 5 mg of hydrocortisone in AM and 5 mg in PM to the 10 mg of prednisone taken in the AM. Advised Rheumatologist in fax (7pe22a04.doc). On 7/23/04 started 15 mg/day because C-rP was 2.4 mg/dl and sed rate was 32. On 7/26/04 increased pred. to 20 because leg pain continued – aching all over stopped with 15 mg. Pearl returned to 15 mg on 7/27/04 after one day at 20 mg. She reduced to 12 ½ mg on 7/30/04.

7/28/04 – Gastroenterologist – Wed, 8:30 am (Endoscopy). Results showed 3 items of interest: Hiatal Hernia; Barrett’s Esophagus; and Gastritis, Pylorus. The hernia is mild, typical of what many people have, and is not a candidate for surgery – Dr advised it is not the same as Pearl’s older sister who died had and should not be of concern. The biopsy results will be available Tues. – unless they show otherwise the Barrett’s has not worsened. This is the "short segment Barrett’s" which is of less concern than the long type. The Gastritis is typical of what was present last year – it is on the bottom of the stomach. It is not of concern other than Pearl must remain on PPIs indefinitely. Antibiotics are not required for the Pylorus. Dr is sending a copy of the report to the Internist.

8/3/04 – Gastroenterologist – Tues, 9:30 am. Discussion item: Pearl has attributes of Sarcopenia which started 7/21/03, 4 months after increasing Prilosec to 40 mg/day (3/7/03). Sarcopenic degradation history:

Questions:

Can double dose PPI be contributing to rapid degradation of Pearl’s musculo/skeletal system by affecting digestion of nutrients in some way? Can Glutamine or other supplements help her avoid future damage?

Visit Notes: Wt 151; Press. 112/82.

  1. Dr advised that the biopsies showed favorable results – no evidence of Barrett’s esophagus or dysplasia; bottom of stomach shows typical irritation probably from prednisone. As a result, Pearl can reduce Prilosec to one pill every other day. At her option she can continue to take two/day if it makes her feel better. Pearl rec’d a copy of the report – a copy will be sent to the Internist also. Next upper endoscopy in two years. We advised Pearl will be starting Actonel soon – he has no objections.
  2. Double dose of PPI isn’t thought to contribute to poor nutrient processing. More likely Pearl’s condition is a result of prednisone. Anemia also can be a factor – Dr reviewed her CBC of 7/22/04 and noted elevated MCV which is an indicator of anemia, B12 or folate deficiency. He doesn’t recommend Glutamine or other health food store supplements.
  3. We advised Pearl will be visiting the Clinic Thursday – Dr would be interested in gastrointestinal observations, if any. I advised we’ll send him a copy of their report.

8/4/04 – Wound Care – Wed, 11:15 am. Pressure: 134/66. Wound is healing, smaller now @ 1 x .5 inch. Stop the enzyme; apply Triple Antibiotic Ointment, AmeriGel or Biafine to keep it moist. Cover with Tefla. Inflammation around wound thought to be allergy from Adaptic dressing. Next app’t: 8/20/04, 11:15am Fri.

8/5/04 – The Clinic 8:15 am (Fast from midnight); Clinic Rheumatologist 9:00 am. Discussion Items (Ref: letter 8pe5a04.doc):

  1. Sarcopenia(?) – muscle tears: both shoulders, left bicep, right calf – all occurred since July, ‘03.
  2. Steroid sparing options – currently at 12 ½ mg/day of prednisone (Remicade, Enbrel, other?).
  3. Osteoporosis – Actonel vs Fosamax. Plan to start Actonel next month.
  4. Monitoring for aortic aneurysm – ultrasound vs CT San.

Visit Notes: Dr evaluated Pearl, reviewed blood test data of 7/22/04, MRI reports of shoulders. He didn’t read the Ref. letter of details I provided. Discussion was as follows:

  1. Muscle problems are entirely due to prednisone – get off of it as soon as possible. A tapering schedule was provided: 10 mg/day for a month; 7.5 for a month; 5 for a month, then down by 1/mo. Ignore Sed Rate and C-rP – don’t even measure them. If she loses sight of course restart prednisone, but for other symptoms don’t. The damages of prednisone far exceed any possible damage by GCA/PMR at this point for Pearl. There is no way to determine if Pearl has GCA now other than by autopsy – Sed Rate and C-rP at the levels they have been can be reflecting many maladies other than GCA. Her GCA/PMR symptoms in recent years must be due to things other than GCA/PMR. The Clinic has observed that GCA/PMR run their course in 1 to 3 years in almost all patients – a few run a year longer; Pearl likely is in the latter category. Dr recommends a follow-up MRI for the right leg finding which is indeterminate in the earlier MRI. I mentioned the U. of Iowa study which found only 8% of GCA patients ever go into remission – Dr states this cannot be correct; the reverse is more correct, that 8% don’t go into remission. I’ll send him info about the article. I asked about anticardiolipin IgG testing for current GCA activity – he reviewed my copy of the medical paper about it and said it’s not significant for GCA indication. Dr advised that shoulder surgery could be an option later, not for range of motion, but to eliminate the painfulness of dislocation. He suggested that steroid injections be done only if they give relief from pain over a long period of time. Alternate day dosing hasn’t been proven to be of benefit.
  2. The Clinic is running a test of 40 patients using Infliximab – results should be available in a year.
  3. Dr thinks both Actonel and Fosamax are equally effective – no objection to switching to Actonel.
  4. The Clinic doesn’t advocate screening annually for aortic aneurysms. He likes the ultrasound scan if Pearl were to be tested for it.

Dr will send Pearl’s rheumatologist a copy of the report of Pearl’s visit today. Pearl will start reducing prednisone 8/6/04. We’ll keep in mind the current test of Infliximab in 40 patients. (In follow-up I sent Dr a copy of the website for the article findings published by U of Iowa Ophthalmology Dept. studying 147 GCA patients; they found only 8% went in remission – others needed 1-16 mg/day of prednisone indefinitely.)

8/10/04 – The Rheumatologist, Tues, 11:00 am. Pearl is now at 10 mg/day of prednisone. Response from the Clinic Rheumatologist regarding four items of interest:

  1. Muscle tears in shoulders and bicep – these breakdowns are due to accumulated steroids. It is important that Pearl taper off of steroids at once – risk of morbidity is far greater now from steroids than from GCA/PMR. Recommended taper schedule: 10 for month; 7.5 for month; 5, 4,3,2,1 per mo. Disregard C-rP and Sed Rate – he thinks Pearl’s clinical symptoms have not been GCA/PMR.
  2. Steroid sparing alternatives – Infliximab trial is underway at the Clinic; will be completed in a year.
  3. Actonel vs Fosamax – both are acceptable, no known difference.
  4. Aortic aneurysm monitoring – ultrasound is favored; the Clinic doesn’t do follow-up on this without cause.

Prednisone taper plan: Now at 10 mg/day; reduce by ½ mg every 6 days down to 6 mg. At 6 mg switch to 25 mg of hydrocortisone – 20 in AM and 5 in PM for a month; then 15 in AM and 5 in PM for a month; finally 10 mg in AM and 5 mg every other evening for a month. The hydrocortisone taper was provided by the Endocrinologist when Pearl tried to taper off steroids in 7/02.

Visit notes: Wt. 153; press. 128/76.

The Rheumatologist concurred with judgments by the Clinic Rheumatologist listed above (1. thru 4.), and with pred. reduction plan. He reluctantly prescribed an additional standing order for blood tests for next 6 months after I assured him the data would be for info only – we are committed to tapering off of prednisone. He advised there is no alternative to pred. for GCA inflammation. I asked about Statins – he thinks they would likely not help but isn’t sure. They may be something to consider in the future if needed. Rx’s also given for Darvocet and Ultracet. Next visit Tues, Nov. 9, 11:15 am.

8/11/04 – Orthopedic Surgeon, Wed, 12:30 pm. Prednisone now at 10 mg/day. The Clinic advised that Pearl has had too much accumulated prednisone and must taper off over the next few months. Shoulder injections of cortisone should be administered for pain only if they are effective.

  1. Left bicep muscle is torn and bulging; left clavicle was sprained – both from stumble on 6/13/04.
  2. Right shoulder has been very painful the last several weeks.
  3. Both shoulders are painful when moving the arms – an X-ray (6/28/04) of both shoulders is available.
  4. Interpretation of MRI of lower right leg, posterior tibialis muscle?

Visit Notes: Dr examined the left arm torn bicep muscle and ascertained it is torn at the shoulder. Fortunately, there are two major bicep muscles and one is intact. Surgery is not done for this type of tear. He suggested Pearl contact him if the bicep becomes painful to avoid further tearing of the rotator cuff muscles (?) so the left shoulder doesn’t get like the right one. I reminded him that the left shoulder cuff is completely torn already – he didn’t respond. Dr gave Pearl an injection in her right shoulder to relieve pain – place ice on it tonight (important). The type of steroid he injects doesn’t get into the system to add to the steroid load; it stays localized. He agreed that Pearl’s muscle tears are the result of steroids. While he doesn’t diagnose legs he offered that it may not be necessary to get another MRI unless the calf becomes painful to indicate worsening – no symptom has been noted so far. He suspects the myotendinous injury noted at the junction of the posterior tibialis muscle likely is another expression of steroid-related muscle/tendon involvement. An MRI normally is done if surgery is anticipated. No follow-up visit. Pearl starts 9 ½ mg pred tomorrow.

 

 

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