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– Events and Drs’ visits from 12/15/98 thru 3/8/99, 10/2 & 3 of 2000, 10/11/01 thru 11/5/01, 10/31/04 thru 11/17/04, 2/22/05 thru 4/13/05 and 8/7/07 thru 8/17/07
12/15/98 - Information for FPP via FAX this date:
(Dr’s response rec’d by fax 12/15/98)
12/16/98 - Information for FPP via fax this date:
Thank you for assisting in arranging appointments with these specialists. If you think Pearl should not be fasting or getting additional blood work-up at this time please advise.
Recap of events of 12/16 & 12/17 re Pearl:
12/16/98 - Visit with Gastroenterologist – review of Pearl’s history, test data and current condition led Dr to the opinion that her episode is not a result of digestive problems. He expected that her visits the next day to the Hematologist and the Rheumatologist would be more apt to define the cause(s) of her condition. He expected the other specialists might want a CT Scan done on her mid-section so he set an appointment for one to be done on 12/30/98. No follow-up appointment was made, other than the CT Scan app’t. Pearl went to the hospital lab and received the white liquid and instructions for that and other medications to be taken prior to the test. Discussion with the lab personnel about Pearl’s allergies resulted in redefining the procedure. Her temperature measured about 95.
12/16/98 - Biopsy surgery, Wed. – Pearl fasted from 5:00am through surgery which was completed at 8:45pm. A blood test was taken prior to the surgery. Her temperature was about 95. An IV liquid was administered during or after. Dr advised immediately after that the artery showed typical twisting and inflammation indications of temporal arteritis but lab results would have to confirm it. He lanced the eyeball again to reduce pressure – his observation was that she continued to show improvement of blood flow to the arteries in the eye. He adjusted her Prednisone dosage to 5 tablets a day (100mg), including that day, until we see him again Friday, 12/18, for our scheduled appointment at 4:40pm. When discharged from the hospital at about 10:30pm her temperature was about 97 degrees, which is typical for Pearl.
12/17/98 - Visit with Hematologist, Thurs. – A blood test was taken and compared to earlier blood test results. Results of the initial test taken in FPP’s office on about 11/9/98 weren’t available at the time. He talked with the Ophthalmologist by phone. The high white blood cell count and high platelets were typical of what would be expected with Temporal Arteritis. Since the count was near the threshold of a bone marrow problem - where white cells are manufactured in excess of requirements - a bone marrow sample was drawn for analysis. He thinks it is unlikely that this condition exists with Pearl but wants to check it out. Results will be reviewed with Pearl at her next appointment, 12/30/98, at 10:00 am. Dr was asked if he wanted the CT Scan performed on 12/30/98 which had been requested by the Gastroenterologist. Dr requested that it be performed sometime later, if at all – he saw no need for it.
12/17/98 - Visit with Rheumatologist, Thurs. – Dr reviewed Pearl’s recent history (past several months) and the test data and information provided by the FPP’s office. He examined Pearl’s joints and flexibility. Dr advised that Pearl has Polymyalgia Rheumatica (PMR) and Temporal Arteritis (Giant Cell Arteritis). He gave us a brochure that describes the symptoms and prognosis. He recommended the following regimen of prednisone: 100mg for 2 days (Thurs and Fri), then 80 for 2 days, then 60 until we see him again in two weeks. Pearl will need to be on Prednisone for 1 to 2 years. We’ll review that dosage recommendation with the Ophthalmologist on Fri, 12/18, at our scheduled app’t. Dr also prescribed Fosamax for osteoporosis, 400 units of Vitamin D daily, 1500mg of calcium supplements daily – Centrum-type multi-vitamin could supply part of these. He performed a bone scan in the office and determined her loss to be about 21% which is more than the average woman would lose at her age. Dr was advised of the CT Scan prescribed by the Gastroenterologist, and requested it be postponed, if done at all. He saw no need for it and thought the invasive nature of the intravenous dye might be detrimental at this time. Pearl’s next app’t is Tues, 12/29, at 3:30pm.
12/18/98 - Visit with Ophthalmologist, 4:40pm, Friday – Eye continues to look healthy. Did not lance it during this visit observing that all that could be done by lowering pressure had been done. Pressure is good at 7 mm. He extended the dosage of Diamox for two more weeks (original prescription would be completed tomorrow). He agreed with dosage schedule for prednisone – 80mg/day for two days, then 60mg/day until we see him in two weeks. Dr expects that Pearl will be on prednisone at a 20mg or less level for the next year or so – if taken off by others contact Dr about continuing with Prednisone. The biopsy results are not in yet – if they indicate Arteritis in the right eye he will not do anything with the left eye (the good one). If Arteritis is not present he will have to look further at the left eye and artery to ensure there is no danger present. He scheduled another visit for Pearl next Wed, 12/23, at 10:40pm to remove the stitches from the biopsy surgery. Dr also prefers that Pearl not have CT Scan testing at the present time. She can continue to breathe in the brown bag to increase CO2 in the arteries.
12/21/98 – Hematologist’s nurse called at 1:30pm to advise that Potassium was high in Pearl’s blood test last week – increase water intake, stop fruit juices (Pearl drinks lots of grapefruit and cranberry juices) and bananas. Not all blood tests results are completed yet.
12/22/98 – Gastroenterologist’s nurse called this morning to advise that the CT Scan scheduled for 12/30/98 has been cancelled as recommended by the other specialists.
12/23/98 - Visit with Ophthalmologist, 10:40am: Removed stitches; biopsy results not in yet. Left eye looks good. Right eye is as good as it’s going to get – Dr says there is a little peripheral vision evident. Continue with Diamox for another 6 weeks as long as it doesn’t have side effects – it may do some good in promoting further vision. Brown bag breathing is optional. Gave a prescription for another 30 day supply (1 and ½ week supply remaining). Stop the Ciloxan drops. Continue the Alphagan drops – he gave her another bottle of them. The Rheumatologist will administer the prednisone – Dr expects the maintenance will be one pill or less/day for a year or so. Both left and right eye arteries have no noticeable swelling anymore. Next app’t: 1/8/99, 1:40pm.
12/28/98 - Visit with FPP, 10:00am:
12/29/98 - Visit with Rheumatologist, 3:30pm - Pearl has had no muscle/joint soreness since on Prednisone. She is easily fatigued – this is contrary to expectations, don’t understand why no stamina. Steroids normally result in excess energy. Dr evaluated Pearl’s temples – three days ago she had an occurrence of swelling of her left artery plus a feeling of pressure on that side of her head. Swelling has not occurred on the right side artery where the biopsy was taken. It left after a few hours, but caused her concern. Reviewed calcium supplements and confirmed 1500mg/day being taken. 400 units of Vitamin D taken daily in multivitamin tablet. Dr reduced prednisone to 2 tablets (40MG)/day – 1 in morning, 1 in evening – starting tomorrow – finish 3 today. Dr assured Pearl that she shouldn’t worry about a similar occurrence in her left (good) eye – the steroid will protect it. Eventually he’ll have the steroid dosage down to about 7 ½ MG daily. He is keeping it much higher now due to the possibility of temporal arteritis inflammation. We advised that the biopsy confirmed the arteritis. Dr will contact the Ophthalmologist to discuss Pearl’s status.Pearl will be seeing the Hematologist tomorrow. Blood test results for a specimen taken yesterday by the FPP were obtained by Dr from the Lab by fax. The sed rate was down to 1, very favorable. Potassium and platelets were normal A follow-up app’t with was set for 2 weeks –Jan 12 at 12:00 noon.
12/30/98 - Visit with Hematologist, 10:30am - Bone marrow test results were very good – producing blood at a lower than normal rate which is very good. The concern was that too much was being produced. All indications are that the irregular blood test readings are a direct result of the Temporal Arteritis and the effort of the immune system to fight it. Dr reviewed the 12/28/98 blood test results. The anemia is the cause of Pearl’s weakness and lack of stamina. It will correct itself as Pearl’s system gets back to normal with time. Potassium is now within normal limits. Sed rate and platelets are back to normal again. No restrictions on eating anymore. Dr will contact the other doctors to advise them of his findings. He wants to see Pearl in 4 weeks to confirm that the anemia is no longer present. Pearl’s blood pressure was very high at the start of the visit – it reduced to a level of 172/90 after the visit with the Dr – this is still high for Pearl but probably due to concern about pending bone marrow test results. Repeat of the test at home a few hours later showed it to be 161/86 with pulse rate of 72. Next app’t: 1/25/99, 9:00am.
1/5/99, Tuesday – FPP’s Office called to advise that Pearl should limit her fluids intake to one and a half quarts/day based on the blood test report of 12/28/98. He will forward a copy of the blood test report to the Gastroenterologist.
1/6/99, Wednesday – Gastroenterologist’s Office called Pearl to set up a CT Scan and liver biopsy appointment. I asked why this was necessary, stating the 12/28/98 blood test result showed her alkaline phosphatase had returned to within the normal range. She said her fax copy of the 12/28 report received from the FPP the day before was illegible – Dr was acting on the original (11/10/98) blood test which showed alkaline phosphatase was out of normal range on the high side. I brought the nurse a legible copy of the 12/28 blood test report, and reviewed notes from the Hematologist and Rheumatologist requesting that a CT Scan not be performed on Pearl for several months, if at all. The nurse advised she would discuss this with the Dr that afternoon and get back to us. (No feedback to date – 1/8/99). We’ll review this with the FPP at Pearl’s appointment next Monday, 1/11, at 11:30am.
1/8/99 - Visit with Ophthalmologist, Friday, 1:40pm – Examination showed both eyes have good pressure. Retina color in affected eye is looking better – had been pale color at time of incident. Blood is flowing to the eye, but not as much as it should be. Continue Diamox if it is helping improve vision – Dr is concerned about potential side effects and doesn’t want Pearl taking it any longer than it is doing the eye some good. One side effect with extended use could be kidney stones. Pearl may be tolerating the Diamox despite being allergic to sulfa because she is taking prednisone with it. Rheumatologist is in charge of prednisone dosage now. If any indication of similar problem with the left eye develops any time in the future the immediate action would be to increase the prednisone from whatever level it is at that time. Keep up the Alphagan – Dr gave Pearl another sample bottle in case she runs out. Pearl can get her hair colored – no restrictions – eye is healthy except for vision, and biopsy surgery is healed. Dr scheduled next visit in three weeks: 1/29/99, 1:30pm.
1/11/99 - Visit with FPP, Monday, 11:30 am – The following items were discussed:
1/12/99 – Gastroenterologist’s Office, Tuesday – Appointment made with Hospital for Monday, 1/18/99, 8:00 am for CT Scan and Liver Biopsy. Picked up contrast liquid at Radiology Dept at noon, Tues. Will start 50 mg dosages of prednisone Sunday evening, fast from midnight and drink contrast liquid by 6:30 am. Be at Rm. 370 for registration at 7:30 am Tues. Will take all day – bring Pearl’s medications.
1/12/99 - Visit with Rheumatologist, Tuesday – needs to see current sed rate – will call FPP to see if that was measured in the blood test taken Monday, 1/11. If not Dr will request another blood test. Based on sed rate Dr will consider reducing the prednisone dosage. Dr thinks Pearl has improved since last visit. Gave her a prescription for a year’s supply of Fosamax for mail order. Also, gave her a prescription for a topical cream for rash on bottom – take sitz baths twice a day. Next appointment in two weeks, Tuesday, 9:00 am, 1/26/99.
1/14/99 – FPP’s office called Thursday, to advise that Monday’s (1/11) blood test results were all good.
1/15/99 – Rheumatologist’s office called Friday, 11:00am to request blood test to check sed rate – FPP’s test of 1/11 didn’t test for that. Pearl went to the lab for the test at 1:00pm.
1/16/99 - Weakness – Pearl fell three times Saturday night before bedtime – legs just buckled under her without warning as though she was weak. Blood pressure checked 143/80, pulse 64; temperature was normal (96.8). Appeared to be normal upon waking Sunday, 1/17, at 8:00am.
1/18/99 – Liver Biopsy and CT Scan of abdomen. Blood test, Scan and Biopsy were done today at 8:00am. Pearl was released at 1:40pm – no unusual events noted. Blood pressure and temperature were normal prior to and after the procedures. Return to normal diet and medication – watch for fever or soreness at site of biopsy. 3 doses of prednisone @ 70 mg each were taken prior to the procedure. Normal dosage of prednisone (20 mg morning and 20 mg in evening) was not taken today because of high dosage for procedure.
1/20/99 – Gastroenterologist’s office called Wednesday, to make an appointment to see Pearl on Friday, 1/22, at 3:45pm. Visit: At that time (1/22) Dr advised Pearl that the liver biopsy report indicated the liver is normal – no cancer or deterioration evident. There are no restrictions on the types of medication she might need from the standpoint of liver or intestinal condition. He thinks the anemia, if it doesn’t clear up with normal diet, may require some medical treatment. Other than that Pearl has no need for his services anymore and has a clean bill of health from him. He noted that Pearl’s condition appears to be significantly improved since he last saw her on December 16. PMR and Temporal Arteritis, being treated by other specialists, apparently are the sole conditions of concern. Pearl’s blood pressure was elevated during the appointment (probably due to concern for the biopsy verdict). She continues to be weak and walks very slowly. Dr gave Pearl a copy of the biopsy report.
1/25/99 – Hematologist’s visit, 10:00 am – Questions:
1 – Can Betadine application to foot for hammertoe surgery cause autoimmune reaction? Pearl had surgery 9/16/98 and layer of skin came off where Betadine had been applied. PMR symptoms appeared 3 weeks later; Arteritis occurred 3 months later. Answer: No.
2 – Can flu shot have caused autoimmune reaction? Pearl received flu shot on 10/1/98, two weeks after the hammertoe surgery? PMR symptoms appeared one week later. Answer: No.
Visit notes: The nurse measured Pearl’s blood pressure and found it very high (about 180/98) – Pearl experienced this during the last visit and it went back down to normal a few hours later when measured at home. After today’s visit the pressure again returned to normal when measured at home at 2:00 pm – it was 164/76, pulse 73. It generally runs low. Pearl continues to be weak and easily fatigued. Pearl has fallen while walking around the house 4 times in the past several days. The nurse drew blood for testing – Dr will review the results and let Pearl know if an injection should be given for her anemia – Medicare won’t cover an injection for her condition. (The Dr’s Office called later in the day to request that Pearl make an appointment to see Dr in 6 weeks – evidently an injection isn’t needed at this time). Dr explained that the anemia is a natural occurrence with the arteritis – as the arteritis goes away the anemia also will go away. The cause of the PMR and Arteritis and autoimmune reaction is not known in Pearl’s case and usually cannot be determined. Next Appointment: Monday, 3/8/99, 10:00. I requested and received a fax copy of the results of the 1/25/99 blood test on 1/27/99.
1/26/99 – Rheumatologist’s visit, 9:00 am – Sed rate from blood test of 1/15/99 was 5, which is very good (anything below 15 is normal according to the Rheum.). Reduced Prednisone from 40 mg/day to 30 mg/day – 20 in AM and 10 in PM. In two weeks lower it to 20 mg/day. Get a blood test today (Pearl went to the Hospital Lab and had blood drawn after the visit). When asked about any pain Pearl advised of sensation in temple areas, not pain but feeling different . Discussion of weakness, slight soreness in knees and legs, and legs buckling: do exercises – 10 times stand up from chair without assistance of hands; while sitting, extend leg horizontal without hands supporting and hold for awhile. Build up leg muscles, exercise to extent possible. James inquired about PMR info stating that recovery period might be 4 years – Dr advised that is a maximum, some cases run their course in a year. Dr repeated the information that PMR and Arteritis happen without known causes, just as lupus does. . Next appointment in 2 weeks – Tuesday, 2/9/99, at 11:15 AM Note: Nurse called Wed. 1/27 to advise blood test showed low Thyroid reading – it will be checked out at next visit. Sed rate on 1/26 specimen was 3 (good). The nurse sent Pearl a fax copy of the blood test results.
1/29/99 – Ophthalmologist’s visit – Friday, 1:30 pm – Eyes pressure was higher than 3 weeks ago, but still normal. Pearl mentioned she had blurred vision in her good eye (left) for a couple of hours on Wednesday, 1/27/99. Doctor examined the left eye and ran a field of vision test. Results good – will monitor that eye. Shouldn’t have the problem the right eye had because of the prednisone. Prednisone was reduced to 30 mg/day on Tuesday, 1/26/99, by Dr – was 40 mg/day. Next app’t in 1 month – 3/5/99, Friday, 1:30 pm.
2/1/99 - Hematologist’s Visit, Monday – Vitamin B12 injection for anemia condition. (Note: Pearl was very weak Thursday, 1/28/99 – was kneeling down cleaning recliner leather chair and couldn’t get up without assistance.)
2/5/99 – Friday: Pearl went furniture shopping – climbed stairs to second floor and leg muscles gave out on top step. Rested for 15 minutes before continuing.
2/9/99 - Visit with Rheumatologist, Tuesday, 11:15 am – since sed rate looked good (3) in 1/26/99 blood test Dr likely will reduce Prednisone to 20mg/day – he prescribed another blood test today for both sed rate and thyroid reading (which was low in last test @ .25). Low reading means overactive thyroid. He’ll call Pearl after reviewing results. He wants Pearl to do more leg exercises to build up her muscles. The lab we went to for the test was "a pit". Next app’t: Wed, Mar 3, at 2:15 pm.
2/11/99 - Call from Rheumatologist’s Office, 10:15 am – blood test results received from 2/9 test: sed rate is low @ 3, thyroid OK. Dr decreased dosage of Prednisone as a result to 20mg/day – 10 in am and 10 in pm. I requested the blood test results be faxed to FPP for Pearl’s appointment this morning.
2/11/99 - Visit with FPP, 11:30 am, Thurs – blood pressure measured high @ 170/100, pulse 82. (Check two hours later at home showed it back to normal). Dr observed mild water retention in lower legs and prescribed a diuretic to be taken with a potassium prescription. (The diuretic may cause an allergic reaction since it is in the sulfa family). Dr doesn’t want to prescribe maintenance drugs via our mail order plan - because Pearl is taking so many he wants the local druggist to be aware of all she’s taking so the druggist can look for potential interactions. (I gave the druggist a copy of Pearl’s list of medications in filling the latest prescriptions – the druggist gave it back to me without comment). Pearl’s nose and throat look OK. Dr thinks Pearl’s weakness is due to the steroids being taken. Dr gave Pearl a refill for Claritin and Vancenase. (Pepcid refill requested 2/12). Next app’t: Mon, Apr 12, 11:15am. (Note: Pearl tried the diuretic and potassium pills for two days but stopped because they made her shaky – water retention is the lesser of two evils in this instance).
2/26/99 – Visit with Ophthalmologist, Friday, 12:30am – Called Dr to renew Pearl’s Diamox prescription and he requested she come in a week before her previously scheduled app’t. He renewed the prescription but wants to see how her Potassium is doing.
Notes: Eye pressure good, both eyes. Right eye showing good blood supply now (dye test performed). Diamox can be stopped or reduced at Pearl’s discretion. It reduces eye pressure to favor blood flow to the eye. Dr thinks it is as good as it is going to get healthwise and doesn’t think the Diamox is needed anymore – but is leaving decision to Pearl. He complimented her as being a good patient – together they did as much as could be done – he thinks his attempts to restore her vision were prudent, though unsuccessful. In the past through such efforts a few people beat the odds and the textbooks and their sight came back – in Pearl’s case that didn’t happen. Watch for potassium reduction due to the Diamox – he gave Pearl a prescription for a blood test for potassium for her next blood test. We advised that Pearl’s problem in the past has been high potassium, not low. Also, we noted that Pearl hadn’t been taking the Lasix and Potassium prescribed by the FPP (as a diuretic) due to shakiness, but will start again today. Next appointment: 4 weeks – March 26, 12:00 noon.
3/3/99 - Visit with Rheumatologist, Wed, 2:15pm – Discussed Pearl’s weakness (fell/stumbled Sunday after standing for about 30 minutes). Dr encouraged Pearl to exercise – walk as much as she can. He reviewed her medications and was advised that the Ophthalmologist wanted to monitor Pearl’s blood potassium level. Dr wants to continue to reduce Pearl’s prednisone dosage if blood test today continues to show low sed rate, to 15 mg/day (now at 20). That would be 10 mg in the morning and 5 in the evening. He gave Pearl a prescription for the blood test and for 5 mg Prednisone pills. Next appt in 3 weeks – Wed, Mar 24, 11:00am. (Dr’s Nurse called 3/4/99 to advise sed rate is 10, potassium is 4.5, both good. Reduce prednisone to 15mg/day. She faxed us a copy of the blood test report.)
3/8/99 - Visit with Hematologist, Mon., 10:00am – Pearl remains weak and lacks stamina. She fell at neighbor’s house last week after standing for about 30 minutes – may have been a combination of no depth perception due to seeing with only her left eye, and her weakness. She has fallen several times this past month from lack of strength. Dr asked her what she sees with her right eye – waved his hand in front of her with her left eye covered. She indicated she saw some motion but it was colorless and unclear – asked if it was his hand. He gave her a B12 injection today, and tested her blood for blood sugar and blood cell count - blood sugar sometimes drops with prednisone therapy. I advised that her recent blood test readings were sed rate of 10 and potassium of 4.5 – both good. Also informed him of her current medications and prednisone dosage (15 mg/day). Advised him that she is on Lasix and a potassium supplement. Next app’t: 4 weeks, Monday, 4/5/99.
10/2/00 – Visit with Rheumatologist, Mon. 10:15 am:
Wt.: 147; Pressure: 148/74. Nurse reviewed Pearl’s current medications. Rheumatologist 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 high at 6 (should be <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.
10/11/01 – Visit with Rheumatologist, Thurs, 11:00 am. Status:
Visit Notes: Wt: 154; Press: 130/80. Rx’s written for Fosamax and Methotrexate. Blood tested. Prednisone tapering optional to Dr. Methotrexate will be taken until visit to the Clinic. Dr thinks it likely is doing some good – I showed him data indicating that 20 mg/day of prednisone has been required to keep CRP in normal range, without and with MTX. Dr advised that CRP and Sed Rate are not indicators of inflammation – Pearl’s clinical symptoms are indicators and she doesn’t have any. He thinks she is and has been overmedicated with prednisone because we request it, not because she needs it. Gave Dr copies of pages from articles listed above – he said he didn’t receive them via Fax; also gave him a copy of the chest Xray report of 9/30/01. Dr thinks Pearl has atherosclerosis damage rather than GCA damage. Because he thinks she is overmedicated with prednisone Pearl will decrease to 17.5 mg/day, pending results of blood test today. He examined her and determined she has no clinical symptoms – weakness and fatigue are due to prednisone. He felt for foot pulse in both feet but didn’t find it – he noted discoloration on the soles of both feet (typical for past couple of years). She should walk daily to build up her strength. We requested monthly visits rather than 6 weeks. Pearl wants to take Lasix and Potassium – Dr recommended no more than two days/week when needed. Take Potassium with the Lasix. He advised that MTX doesn’t affect potassium. Next visit: Wed., Nov. 14, 9:15 am.
10/12/01 – Blood Test Results were favorable. CRP is negative; ESR is 12. Rheumatologist advises that prednisone be continued at 17.5 mg/day.
10/28/01 – Increased prednisone back to 20 mg/day in divided doses due to feeling poorly. Heavy chest pressure and left shoulder pain during night resulted in taking three nitro pills for relief. Will stay at 20mg thru Clinic visit – informed the Rheumatologist.
11/3/01 – Pearl got a flu shot.
11/5/01 and 11/6/01– Visit with Clinic Rheumatologist:
Background: Pearl continues on 18 prescription medications, including Plavix, Prednisone, Methotrexate and Darvocet. She has not been feeling "well" – hips and legs ache most of the time. Latest major concern is possible aorta involvement as indicated by Xray report on 9/30/01.
10/31/04 Steroid Sparing Treatments – A search of current medical publications indicates there is no medication other than prednisone proven effective for GCA at this time. Review of Pearl’s history shows that iron stores in bone marrow were depleted in a test by the Hematologist on 12/5/01, 1 month after Pearl stopped taking Methotrexate for a year (10/8/00-11/14/01). A bad side effect of Methotrexate in some patients is damage of bone marrow. Pearl shouldn’t try it again for steroid sparing. Three GCA steroid-sparing alternatives remain:
2) Infliximab (Remicade);
3) Alternate Day Dosing.
Observations: Both 1) and 2) are currently being evaluated at the Clinic in long-term studies. Re. 3) -one way to reduce total intake of prednisone may be to take a reduced dosage of prednisone every other day. Literature generally suggests alternate day therapy is ineffective in a majority of patients but no trials have been done that reduce the prednisone instead of eliminating it entirely on the alternate day.
Proposal: Pearl can take10 mg/day of prednisone (7 ½ in AM; 2 ½ in PM) or whatever dose is needed to maintain control, and on alternate days take 15 mg of hydrocortisone (10 in AM and 5 in PM) – this is the equivalent of 5 mg of prednisone on the alternate days. (The 2 ½ mg dose of prednisone in the evening will continue to be effective the next day, being equivalent to 10 mg of hydrocortisone on that day.)
Rationale/References:
"….most patients with hypoadrenalism manage with doses of hydrocortisone of 15 to 25 mg/day."Corticosteroid insufficiency in acutely ill patients. Cooper MS, Stewart PM.
5. Endocrinologist advised that prednisone is effective in the system for 24 hours; hydrocortisone for 12 hrs. Literature stated that prednisone is effective for 20 hours. Split dose of prednisone will ensure effectiveness over 24 hours.
The above info was faxed to Rheumatologist (10pe31a04.doc) for discussion at Pearl’s next visit, 11/9/04.
11/4/04 – Podiatrist, Thurs, 12:00 noon. Dr debrided Pearl’s heel ulcer – it is down to about 1/8 inch in diameter but is cavernous. He expects it is healing – Pearl has been using Collegenase Santyl cream for the past several days in hopes it will promote healing faster than Biafine was doing.
11/9/04 – Rheumatologist, Tues, 11:15 am. Status since last visit, 8/10/04:
Visit Notes: Wt. 152; Press 126/74. Pearl is at 10 mg/day of prednisone. Her right shoulder is hurting and arm is numb at times with nerve shocks on occasion. Dr felt pulse in right foot; didn’t mention if he felt pulse in left foot. He advised that alternate day dosing as proposed might be worth trying once control of inflammation is gained. I stated that I think the controlling dosage may be 11 or 12 mg/day, and he thinks so too. I told him that Methotrexate is not worth trying again because it caused depletion of iron in bone marrow last time (2001). He advised that iron depletion is due to internal bleeding or something else, not bone marrow depletion by MTX. That being the case we agreed MTX would be worth a try once again. We’ll combine that with the alternate day dosing which we’ll start when the blood test shows inflammation is controlled. He gave Pearl a Rx for MTX and for a blood test. He advised that Remicade (Infliximab) and Enbrel (Etanercept) are not authorized for GCA by Medicare so they aren’t covered and are expensive ($2,000/mo). They are experimental for GCA at this time. We’ll pursue MTX and alt day therapy. Dr gave Pearl an injection in right shoulder. Next visit: Wed, 12/22/04, 2:00 pm.
11/17/04 – Blood Test was done today; results 11/18/04 showed C-rP reduced to 1.7 from 3.0 last month; Sed Rate 26, was 25 last month. Platelets increased to 775 from 740. Rheumatologist advised that Pearl initiate alternate-day steroid-sparing therapy: 10 mg/day on dosing days; 7.5 mg on alternate days. In addition, start Methotrexate @ 7.5 mg/wk and Folic Acid @ 1 to 4 mg/day. He called in Rx for Folic Acid. Pearl plans to start 7.5 mg of MTX on Sat., 11/20/04, and 4 mg of Folic Acid 11/19/04 (has been taking 800 mcg). Refer to c:\wordata\pearl\11pe18a04.doc for discussion of concerns about combining MTX and Prilosec, and desirability of adding vitamins B6 and B12, and increased Folic Acid dosage for optic nerve regeneration. Dr advised in follow-up that many patients combine MTX and Prilosec, so go ahead with his recommendations.
2/22/05 – Reduced folic acid to 1 mg/day by stopping Foltx (2 ½ mg of folic acid plus other vitamins) because literature states that folic acid stimulates platelet growth. We’ll see in next blood test if this causes reduction in the high platelets (700s) experienced these past 5 months. (A side benefit seems to be that Pearl’s stomach pains have stopped with the folic acid reduction.).
3/12/05 - Methotrexate was stopped today because of the severe stomach irritation Pearl has been experiencing these past several weeks. She reduced Folic Acid on 2/22/05 which seemed to help temporarily – perhaps the 1 mg/day she’s currently taking is adding to the irritation – she’ll stop that also tomorrow. The Vascular Surgeon wants Pearl to increase Pletal to 100 mg/day from 50 mg/day for leg artery circulation – this requires that she stop the Prilosec; perhaps she can do that after her stomach pain leaves.
3/15/05 – Blood Test today: C-rP increased to 1.6 from 1.4 mm/dl; Sed Rate 20, was 23; platelets 690, was 734. Prednisone was 11 mg/day for past month. Propose increase in pred. to 12 mg/day and alternate therapy at 7 mg/day – both days would have 2 mg in the evening, the remainder in the morning. Avg would be 9.5 mg/day. Discuss with Rheumatologist tomorrow during visit.
3/17/05 – Rheumatologist, Thurs, 1:45 pm. Status since last visit, 2/2/05; Pred. has been at 11 mg/day for the past month:
Visit Notes: Wt. 159; Press 120/60. Dr agreed to stop MTX and Folic Acid. Change prednisone to 12 ½ mg on dosing days and 7 ½ on alternate days. Pearl’s stomach pain stopped with discontinuation of Folic Acid – Dr advised folic acid has no effect on the stomach. Dr advised that while folic acid promotes platelet growth it has no effect on the quantity of platelets in the blood. I asked if Pearl might benefit from a PET Scan – the Scan done at the Clinic in Oct, ’02, showed no indication of inflammation – her platelets were normal at the time of that test. She had a flare immediately after that Clinic visit. Dr advised it would be of no benefit. Discussed bone density scan – check with radiologist to get full report instead of just synopsis. Dr didn’t receive a copy of the blood test of 3/15/05 – gave him a copy of ours. Pearl requested a steroid injection for pain in left shoulder but Dr declined. Next visit Wed June 15, 11:15 am.
3/18/05 – Ophthalmologist, Fri, 10:15 am. Pearl has seen two floaters recently.
Visit Notes: Rt eye – 2 fingers; Lt eye – 20/50-1 (Rm 2); Press. R & L 15. Examination shows both eyes look healthy; Dr isn’t concerned about floaters Pearl experienced – retina looks good. Photos taken – both eyes have good blood flow to the retina; optic nerve damage prevents Pearl from seeing in R eye but eventual improvement is always possible. Dr recommended next visit in 1-2 mos but we opted for 3 mos: 6/17/05, Fri, 10:15 am.
3/21/05 – Internist, Mon, 1:45 pm, J&P. Status since last visit, 12/13/04:
Visit Notes: Wt. 159; Press. 138/64; 98 BPM. Dr noted Pearl’s swollen ankles which Pearl advised reflect the MTX recently stopped. Dr thinks it may reflect increased prednisone. He recommended support hose or knee-high stockings. A copy of the bone scan summary report was given to Dr – he suggested Evista for consideration. Next visit: Tues, 7/19/05, 11:00 am.
3/22/05 – Dizziness upon rising in the morning. Took only 7 ½ mg of prednisone yesterday which may not be enough – reduced from 12 ½ the day before. Will change doses to 12 mg and 8 mg, alt. days.
3/23/05 – Hematologist, Wed, 9:30 am. Concern is elevated platelets (Ref. letter to Hematologist, 2pe17c05.doc).
Visit Notes: Wt. 158; Press 132/77; temp 97.3. Blood test showed platelets increased to 739 from 690 in 3/15/05 test, and WBC increased to 18.6 from 15.6. Additional blood drawn for tests for leukemia, iron and folate. Kit given for stool test. Dr is puzzled by elevated platelets – they would normally indicate internal bleeding but red blood cells are large; would be small with internal bleeding. Copy obtained of initial blood test. Next app’t 4/20/05, 9:30 am, Wed.
4/13/05 – Blood test and urinalysis were done today. Results obtained 4/14/05:C-rP down from 16 to 11.7 mg/L; Sed Rate unchanged at 20; Platelets down from 739 (3/23/05) to 574; urinalysis was normal – many other readings were improved though still out of limits. While C-rP remains above normal this is the best reading since Jan. 2004. I advised Rheumatologist in fax (4pe13a05.doc) before test results were obtained that Pearl has been taking 12 mg/day of pred. For the past two weeks – she tried alt. day dosing of 12 and 7 ½ after her last visit but found on the alt. day she couldn’t move her legs so increased from 7 ½ mg, eventually settling on 12 mg daily. Her legs finally returned to the condition they seemed to be before the flare last August when she attempted to taper off of prednisone. Toes are warm and pink. Her ankles continue to be swollen somewhat but that also seems to be improving. Pearl’s inflammation was being controlled at 12 ½ mg last August before visiting the Clinic – then somewhere between 12 ½ and 8 mg/day during the taper the flare began. Unless Rheumatologist advises otherwise I suggest Pearl remain at 12 mg/day for the next month.
8/7/07 – Methotrexate was restarted today, 5 mg/wk, in anticipation of concurrence from Rheumatologist at Pearl’s next visit. A recent medical publication (No. 341) reports that meta-analysis of 3 previous studies of MTX and GCA finds steroid-sparing was achieved with MTX – the studies averaged 55 wks in duration and the benefits are latent, sometimes not showing up for a year. Review of Pearl’s use of MTX in 2000-2001 likely allowed reduction of prednisone in the 2002-2003 period. C:\wordata\pearl07\8pe7a07 was E-mailed to Rheumatologist today advising him of this finding, and discussions of Humira (Adalimumab) and Gleevec (Imatinib Mesylate).
8/14/07 – Methotrexate was not taken today as scheduled because Pearl had diarrhea and vomiting last night. She started Folic Acid supplement of 400 mcg yesterday at noon. Her history has shown stomach reactions to Folic Acid in the past which were relieved when Folic Acid was discontinued. Literature states that nausea and vomiting are potential side effects of MTX; they aren’t associated with Folic Acid – but in Pearl’s case they apparently are. Prilosec interferes with elimination of MTX – Pearl is on a double dose of Prilosec for her sensitive stomach. She’ll stop both MTX medications and discuss with Rheumatologist next week.
8/15/07 – Blood Test today; prednisone at 12 ½ mg/day. Results generally good. C-rP @ 1.4, down from 2.2 in May; Sed Rate 18, was 20. Negatives: RBC low @ 3.70, down from 3.79; HGB lower @ 12.2, was 13.0; platelets high @ 685, was 579; and Alk Phos up @ 130, was 40. ALT is unusually low at 9, down from 21. Pearl had excursions of pred. to 13 ½ mg/day and 15 mg/day a couple of times in the past three months to reverse legs stenosis/ischemia – also, Plavix has been taken during these critical periods at ½ a pill – averaging about ½ pill/wk. Will recommend to Rheumatologist that Pearl increase pred. to 13mg/day for a month to achieve control of low-grade GCA inflammation. (Ref: 8pe16a07.doc to Rheumatologist).
8/17/07 – Dermatologist, 8:20 am, Fri (Prl). Dr froze two lesions on Pearl’s nose, one on her left elbow and one on her left upper arm. He suggested Mederma for scar removal on her right upper arm and gave her a sample.
8/17/07 – Wound Care, 12:00 noon, Fri. Press: 139/76. Wound has grown smaller – now 3" x 3.1"; was 3.5" x 4"; also, less yellow is present which is good. Yellow consists of "slough" or Fibrin which is a combination of dead white blood cells and wound drainage. A slight rash is evident on one side of Pearl’s shin wound – it may be due to gauze irritation or use of Elta under the gauze. Wound Care said Elta doesn’t cause rashes; they suggested Pearl use an anti-fungal cream on the rash - they applied Lotrizone, an anti-fungal, to the rash. We bought a tube of Lotrimin (Clotrimazole), an anti-fungal used for athlete’s foot. Wound Care didn’t have any Mediplex AG on hand so they applied hydrogel to the wound and wrapped it in gauze – replace with Mediplex AG tonight after Pearl’s shower. Next app’t: 9/4/07, 11:30 am, Tues.
8/21/07 – Internist, Tues, 3:15 pm. Status since last visit, 10/27/07:
Visit Notes: Wt: 136; Pulse 124 bpm; Press: 116/68. Pressure looks good – Pearl said she feels faint at times – if medication is causing pressure to go too low Dr suggests reducing Toprol more. Dr recommended trying Folic Acid alone again to see if it continues to cause vomiting – Folic Acid should be benign. Dr wrote an Rx for mail order Pravastatin. Dr felt Pearl’s right knee and determined that her cartilage likely was damaged and will take up to 6 months to correct itself – he doesn’t feel ligament damage. Dr is reluctant to give Pearl an injection of any kind for fear of introducing infection. Tetanus isn’t needed for household injuries – it is important when soil is a factor since that’s where the harmful bacteria flourish. Dr encouraged Pearl to exercise however she can, even standing is important to prevent muscle atrophy. He observed that she is looking thinner and would be concerned if she lost much more weight thinking it might be indicative of a problem. Pearl used hydrocodone for bone wound pain relief a couple of days because Darvocet wasn’t effective but has been using Darvocet since. Next visit 2/19/08, Tues, 2:30 pm.
8/22/07 – Rheumatologist, 10:30 am, Wed. Status since last visit, 4/11/07:
Visit Notes: Wt: 135. Dr would like to see Pearl reduce pred; he saw the Clinic Rheumatologist recently at a seminar – they discussed Pearl’s illness and agreed that she is overmedicating on pred. – Clinic Rheumatologist continues to think she should get off of it. Rheumatologist said Sed Rate is normal at 18 so she should reduce pred. I advised that when she reduces her leg arteries block up causing a pre-ulcer to form in her left heel and legs aching/discoloration. Clinic Rheumatologist has not appreciated the fact that Pearl is an outlier – he is an expert on GCA but fails to take into account Pearl’s unusual legs inflammatory condition. I proposed that we try Folic acid again in hopes that Pearl can tolerate it. If so, with 1 mg of Folic Acid, Pearl can take 10 mg/wk of Methotrexate. While this is a low dosage it allowed her to be in the 8 mg/day area of prednisone back in 2001. Dr examined Pearl’s right knee, noted that it is swollen as compared to the left knee and has fluid. He prescribed an X-ray to rule out a torn meniscus of a nature that might require repair. Next app’t: 11/20/07, Tues, 10:30 am.
8/23/07 – X-ray of right knee, prescribed by Rheumatologist yesterday, was done today. Report shows no broken bones; fluid accumulated in knee causing it to swell, likely due to falls on 5/18/07 & 6/12/07 causing inflammation (arthritis). Over time it should dissipate as did the left shoulder a few months ago.
8/25/07 – Restarted MTX, 7.5 mg, today (Sat.); started Folic Acid yesterday – 1 mg Folic Acid + 800 mg of Sundown Folic Acid Xtra which contains B6 & B12. Pearl stopped Prilosec because of interaction with MTX; is taking Pepcid and Carafate as needed for stomach pain (4 times/day). Ordered Carafate pills. On Tues, 8/28/07 she started 2 mg Folic Acid + 1600 mg of Sundown Folic Acid Xtra. If she can tolerate these hopefully she can increase MTX to 10 mg/wk. On 9/1/07 increased MTX to 10 mg/wk. Pearl stopped Pravastatin because of interaction with MTX. On 9/7/07 Pearl increased Pletal to 100 mg, twice a day, because of stopping Prilosec earlier.
9/4/07 – Wound Care, Tues, 11:30 am. Dr viewed left leg shin wound; it is almost entirely healed. They dressed it again with Mediplex AG and made an app’t for 9/18/07, 11:30 am, Tues (two weeks); cancel if wound completely heals before that time.
9/5/07 – Allergist, Wed, 11:45 am. Status since last visit, 10/10/06:
Visit Notes: Temp 96.9; Pulse 100; Respiration 20/min; Wt 133; Press 110/62; Ht 62"; Wt. 133. Continue with current medications since they seem to be working well for Pearl. Combivent can be taken up to 4 times/day if needed for crisis situations. No alternative for Allegra-D, however, salt water nasal irrigation (see instruction sheet provided earlier by Dr) might be a satisfactory substitute or allow decrease in the use of Allegra-D – Pearl tried this before but gave up on it; she’ll try it again. Lung capacity was checked – equivalent of age 83, same as last year (in 2005 it was age 77). Next app’t in 6 months – call to make the app’t.
9/17/07 – Blood test was done today. Canceled Wound Care app’t scheduled for tomorrow since Pearl’s shin wound is 99% healed. Blood test results: C-rP is normal @ <.5 mg/dl for the first time since March, ’07; Sed Rate remains normal at 18. Other favorable GCA indicators are: WBC is 14.1, down from 14.5; RBC is 3.87, up from 3.7; HGB is 12.8, up from 12.2; Platelets is 644, down from 685; and Alk Phos is 41, down from 50. Recommended to Rheumatologist that Pearl reduce from 13 to 12 ½ mg/day of prednisone for two weeks and if no symptoms, reduce to 12 mg. MTX at 10 mg/wk; folic acid w/B6 & B12 @ about 2 mg/day. (Ref. 9pe18a07.doc).
9/20/07 – Plavix pill taken today because left foot feels cold.
9/21/07 – Weight loss. Pearl lost 18 lbs since Nov ’06 though she continues to be on high prednisone. She was 150lbs on 11/16/06 and weighed 133lbs at visit with Allergist on 9/5/07. Two reasons are: South Beach diet was started 3/1/07 lasting about a month; tapered off of Premarin 4/19/07 thru 7/18/07.
We’ll continue to monitor her weight to be sure it isn’t something else that is causing the loss. Refs: Word file c:\wordata\pearl\unintended weight loss.doc; history of weight since stable at about 150 – 7/15/06 148lbs, 8/23/06 150lbs, 9/27/06 148lbs, 10/4/06 146lbs, 11/16/06 150lbs, 12/18/06 143 lbs, 1/8/07 146lbs, 4/2/07 141 lbs, 5/16/07 140lbs, 5/30/07 137lbs, 8/21/07 136lbs, 9/5/07 133lbs.
9/24/07 – Flare? A day or two after reducing from 13 mg/day to 12 ½ mg/day of prednisone Pearl had symptoms of possible GCA inflammation in the form of: cold left foot (she took a Plavix for this); pain in one side of head; right ear ache. I suggested she increase to 13 ½ mg/day for a week then settle back at 13 mg/day until her next blood test but she opted to continue at 12 ½ mg.
10/1/07 – Flu shots by Internist’s nurse. Pearl walked to the Dr’s office but had calf cramps and right leg pain in the process – stopped every 10 steps and had to rest on a bench before continuing. She took Plavix this evening and felt a rush of blood to her legs and feet. Took another several days later.
10/5/07 – New Orthopedist. Tried to make an app’t with Dr to evaluate Pearl’s right knee which continues to be swollen and unstable. I obtained the xray film of Pearl’s right knee 8/23/07. Dr’s. office called 10/8/07 and scheduled an app’t for Tues, 10/9/07, 2:45 pm.
10/9/07 – New Orthopedist, 2:45 pm, Tues. Initial visit. A copy of the 8/23/07 Xray report and films were shown to Dr.
Questions:
Medications: See List – highlights: For circulation - Pletal taken daily, Nitro patch used daily, Plavix taken about once a week.
General health: Non-smoker, no alcohol, low total cholesterol, high HDL, heart arteries clear, good ejection fraction. Walking extremely limited due to legs pain and instability of right leg. GCA/PMR appear to be under control at this time with >12 mg of prednisone daily. Blood tests are taken monthly to manage.
Rt. Knee History – recent:
5/18/07 - Pearl suffered a skin scrape on her right calf from bicycle tire falling against it in our garage; it appears to be healing well but there is redness and pain above it behind her knee which might be thrombosis. She received 120 mg of prednisone on 5/17/07 in preparation for a 64 slice heart CT scan and aorta scan done earlier today (5/18/07).
5/30/07 - Pearl showed Cardiologist her skin scrape which occurred on right calf on 5/18/07 – Dr is pleased that it healed so quickly. Redness behind her right knee is almost disappeared; it had been deep purple and very tender to touch and covered an area about 3" x 3". Thrombosis was suspected on 5/28/07 because of large area of deep redness and pain when touched but this cleared up over the next two days – in retrospect it likely was due to restricted circulation above the skin tear from resting her leg on a pillow too long.
6/4/07 – Podiatrist, 5:30 pm. Dr viewed Pearl’s right knee which continues to be sore; slight swelling on outer right side appears to be fluid which is dissipating. Cold is OK; don’t apply heat. Don’t use compression because of poor circulation in lower leg. Elevate.
6/12/07 - Allergist, Tues, 11:45 am. Pearl was unable to make this app’t due to severe injury when stepping down into the garage to depart for the app’t. Her right knee gave way and she tore a large patch of skin in her upper inner right arm. A letter was faxed to Dr advising her of the situation and requesting Rx’s be mailed to Pearl – will reschedule the app’t when Pearl is healed enough to travel.
6/25/07 – Wound Care, Hosp., 11:00 am, Mon. Press: 138/72. Two wounds were dressed today – the upper right arm and a right leg shin scrape that occurred two days ago after Pearl bathed. Drying her leg with a towel scraped the skin away to cause an open wound.
8/21/07 - Internist felt Pearl’s right knee and determined that her cartilage likely was damaged and will take up to 6 months to correct itself – he doesn’t feel ligament damage. Knee has been unstable since receiving 120 mg of prednisone on 5/17/07.
8/22/07 - Rheumatologist examined Pearl’s right knee, noted that it is swollen as compared to the left knee and has fluid. He prescribed an X-ray to rule out a torn meniscus of a nature that might require repair.
8/23/07 – X-ray taken today showed no broken bones, just fluid buildup in knee.
History – General:
12/98 - Giant Cell Arteritis (GCA) and Polymyalgia Rheumatica (PMR) were diagnosed after permanent loss of vision in right eye – have been on prednisone continuously since; now at 12 mg/day.
7/99 – Legs arteries became stenotic, ischemic and spasmodic. Disagreement ever since between specialists about whether the cause is GCA inflammation or atherosclerosis. Low prednisone results in legs arteries stenosis and increase in acute phase reactants (C-rP & Sed Rate); increased prednisone improves flow to feet and reduces acute phase reactants. Since atherosclerosis doesn’t spasm or improve with prednisone I’m convinced the problem is GCA-related. Pain in left shoulder/neck area started two months later.
2/02 – Corticosteroid injections started by Rheumatologist in left shoulder for pain; continued about every 6 months by Rheumatologist or an Orthopedist.
3/02 – Left arm subclavian artery restricted, indicated by pain and reduced blood pressure compared to right arm pressure. This can happen with uncontrolled GCA/PMR. Left shoulder blade found necrotic and broken 3 years later.
7/03 – Rotator cuff tendonitis and bursitis in right arm/shoulder - this can reflect uncontrolled GCA/PMR.
7/03 – Corticosteroid injections started in right shoulder by Orthopedist for pain; continued about every 6 months
3/04 – Both rotator cuffs completely torn while undergoing light physical therapy prescribed by Orthopedist. Later evaluation by several Orthopedic Surgeons determined surgery is not an option for left, not recommended for right shoulder until off of prednisone.
5/05 – Corticosteroid injection by earlier Orthopedist caused staph infection in left shoulder which was drained and treated surgically by Orthopedic Surgeon during next several months; finally healed at end of October.
5/07 – Orthopedic Surgeon drained swollen left shoulder twice this month – he stated it is effusion, also arthritic joint.
Visit Notes: Dr reviewed the 8/23/07 X-rays and examined Pearl’s knee and concluded that knee is stable, no torn ligaments or broken bones – merely excessive fluid present. He suggested instability may be due to sharp pain, causing a reflex reaction favoring the joint. He removed about 1 ½ oz of fluid then injected an anesthetic (Lidocaine?) and Depomedrol (a corticosteroid). Apply ice for 10 minutes about 3 times/day. Return in 3 weeks if further treatment is needed – Dr will be on vacation for two weeks. (Note allergic reaction: Pearl had a reaction about 2 hours after returning home – vomiting and loose bowels, overheated, then sudden cold. Check of Lidocaine, if that were used (it had been used by an earlier Orthopedist for shoulder treatment 7/23/03), showed that it can affect the CNS (central nervous system) to cause vomiting, sensation of heat, cold; also, there is a sulfite component in Lidocaine that can affect people allergic to sulfa. Pearl continued to feel "out of sorts" 24 hours later but the nausea and loose bowels subsided. She didn’t take Benadryl which she normally takes for allergic problems, not realizing it may have been an allergic reaction at the time.)
10/13/07 – Puncture wound on left thigh was incurred when a small dog jumped up on Pearl’s legs – slight bleeding resulted, triamcinolone and later hydrogen peroxide were applied to the wound; no redness developed around it; it is thought to be insignificant. Bleeding stopped within 12 hours. Plavix was being taken @ 1 pill/week; I don’t recall when Pearl had her last pill.
10/15/07 - Blood test. Results of 10/15/07 test were favorable – C-rP remains normal at .5; Sed Rate 13, down from 18 last month; RBC, Hemoglobin, Hematocrit and Alk Phos normal; WBC 14.7, up from 14.1; Platelets 661, up from 644. Pearl has been at 12 mg/day of prednisone, suggested to Rheumatologist on 10/16/07 that she reduce to 11 ½ mg for two weeks then to 11 mg/day if symptoms allow. Also proposed Pearl start doxycycline for potential C.pneumoniae (see Fax 10pe16a07.doc). Dr’s office called to advise Dr is on vacation this week.
10/18/07 – Severe stomach pain, vomiting, diarrhea and chills. Called paramedics at 3:30 am after I couldn’t get Pearl warm and she became very weak after vomiting and diarrhea since about 11:00 pm the evening before. I had tried to take her temp but she was in so much pain it was difficult to get a good reading; after several unsuccessful attempts I called 911. They didn’t find a vein to sedate her so they gave her a dose of Versed Inhaler to relieve her stomach pain. Pearl never had Versed before – I had no reason to question their judgment. I don’t know why but afterwards they started giving her oxygen on a tube placed near her hose – she never used or needed oxygen before. Then they took her to the Hospital ER at about 4:15 am. At 4:40 am her pressure was 119/56; pulse 117, temp 96.9. Her body showed mottled discoloration on the sides of her stomach – I advised these might be typical skin damage after being lifted by the paramedics in transfer but wasn’t sure. An attendant asked why she was on oxygen and I advised I didn’t know, the paramedics started it without asking, and she never needed it before – lung function and capacity had been good. They kept her on the oxygen stating that her oxygenation was low. Very little remedial activity took place for several hours – mainly hooking her up to monitor vital signs.
As pulse increased and oxygen monitoring showed labored and less efficient breathing they became more involved. At 9:00 am they advised they were going to take her for a CT Scan (done at 9:15 am). I advised the nurse that it was time for Pearl’s prednisone medication and it was essential that she receive prednisone for management of GCA and leg arteries vasculitis. Dr expressed concern about mixing Cipro (which she administered to give Pearl intravenously, along with Sodium Chloride solution to replace the bodily fluids she lost after so much vomiting) with Prednisone so administration of prednisone was stalled until 4:15 pm. I learned that Pearl’s WBC was found to be 22 upon arrival at ER indicating infection/inflammation – it had been 14.7 three days earlier which was more typical of what it has been running during her illness with GCA (also, C-rP had been .5 earlier indicating no infection). I called her internist to see if he could assist in getting Pearl’s prednisone administered – he told me later he visited Pearl in the ER at 2:30 pm.
She had gone into shock (possibly septic shock according to the ER physician) – late in the afternon her pressure became immeasurably low and no arm or leg pulses were felt. Her vital signs indicated an emergency had developed. They administered medication to revive her pressure. After she was somewhat stable again they gave her 100 mg of hydrocortisone (equivalent of about 25 mg of prednisone) for GCA - the extra (above 12 mg of prednisone) because of system stress. The hydrocortisone was prescribed to be given every 8 hours during the next several critical days. Two hours after going into shock the ER physician decided to sedate her with Versed – this continued until death. (After reading the ER/ICU reports on 10/31/07 I looked into drug information about Versed. It can cause shock in people with hypersensitivity to it; side effects include hypotension and respiratory depression, both of which she was experiencing in the ER upon arrival. It should not be administered to a person in shock).
Pearl expired at 10:30 am the next morning (10/19/07) in the Intensive Care Unit.