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– Events and Drs’ visits from 3/24/99 thru 7/22/99
3/24/99 - Visit with Rheumatologist, Wed., 11:00am – Pressure 110/80; reviewed current medications being taken. Dr noted in reviewing a recent blood test that hemoglobin now is where it should be so she should be feeling better than before. White blood cell count will continue to be elevated – though continuing to decline - due to prednisone. To help gain leg strength Dr recommended doing 100 stand-ups from a chair each day (without using hands). Also, continue with leg lifts while seated. Physical Therapy wouldn’t do any more than that so no need to prescribe. He placed no limits on her exercise – do as much as she can do. She had one headache, a couple of weeks ago, and took one Darvocet for it – it didn’t go away immediately but went away overnight. Took a blood test for potassium and sed rate. Next appointment in four weeks – Monday, 4/26/99, 10:45 am. Nurse called Pearl next day (Thursday, 3/25/99) and advised that 3/24/99 blood test showed Potassium is 5 and sed rate is 15 – both good (according to the Dr) – so decrease the Prednisone to 12.5 mg/day – 10 in morning and 2.5 in evening.
3/26/99 - Visit with Ophthalmologist, Friday, Noon – Eye pressure measures on high limit of normal @ 21 (L) and 19 (R). Caution range is 21-26, above that is treatable range – Alphagan would be used for treatment. Diamox and Alphagan use is up to Pearl. Since Pearl elects to continue with medication Dr wants to see her again in 4 weeks. No problems are evident in either eye. If Pearl sees a dark curtain in her left (good) eye she should call Dr at once. If she can see through it, it isn’t serious – flashes she may see are not indicative of a problem. Next app’t: Fri, 4/23/99, 10:20 am.
4/5/99 - Visit with Hematologist, Monday, 10:00 am – Pearl’s blood pressure was measured and found high @ 182/88. This has been typical for visits here – her pressure is always back to normal when we check at home later. Pearl has been feeling a little stronger the past week. Glucose is indicator of blood sugar – it measured within normal range last month. Blood was tested during this visit, and a Vitamin B-12 injection was administered. Dr advised that if the readings continue to be normal in this test – except for white blood cell count which will remain elevated until off of prednisone – he won’t need to see Pearl anymore. Hemoglobin readings returned to normal which is a good indicator. He will contact the FPP and advise him of Pearl’s situation – if more Vitamin B12 injections are needed the FPP can administer them. Disc. with nurse of Hematologist’s Office, 4/7/99: after reviewing 4/5/99 blood test results Dr advised no more B-12 injections needed, but he wants to see Pearl in 3 months – Monday, July 12, 10:00 am.
4/12/99 - Visit with FPP, 11:15 am, Monday – Blood pressure was 132/74 – blood sample was taken. Physical therapy was prescribed – prescriptions also written for Lasix, Potassium and Darvocet. Pearl took one Darvocet two days ago – it took the edge off her headache which was on the left side (good eye) – normally her headaches had occurred on the right side. The next morning the headache was gone. Dr reviewed blood test results which indicated platelets were a little high, white blood cell count still a little high, red blood and hemoglobin both were low. Dr thinks the blood bears watching since it could continue back toward where it was a few months ago. Next appt in two months – Wed, 6/9/99, 1:30pm. Dr called Tuesday, 4/13/99, to advise that all blood measurements were within range. Faxed a copy to Pearl for ref.
4/19/99 - Visit with the Allergist, Monday, 11:15 am – Changed medications: stop Ru-tuss, Claritin and Serevent; start Allegra D and Allegra – Allegra D in AM, 1 tablet daily; plain Allegra in PM, 1 tablet daily. If it doesn’t take care of the throat hoarseness and nasal drip, stop the Allegras and call the office for directions. Prescription refills given for: Vancenase AQ (9 mos supply); Vanceril (9 mos) - if asthma acts up increase from 2 doses a day to 4; Albuterol 2 inhalations every 4 hours as needed for shortness of breath or cough – was 4 inhalations in AM and 4 in PM. Next app’t: 3 months. Dr wants to take tests when Pearl is off of prednisone, also be off of antihistamine 5 days before tests.
4/23/99 - Visit with Ophthalmologist, Fri, 10:20 am – Dr examined Pearl’s eyes – pressure was down from earlier visit – good. He refilled the Diamox prescription and gave her more Alphagan. She can stop either of these anytime she wants – he is prescribing them because she wants them and they aren’t causing her any bad side effects – make sure potassium stays up, and measure every two months. No improvement in right eye vision is apparent. A picture was taken of her right eye. Dr said that prednisone is to preserve vision in left eye – it is susceptible to same illness and damage as right eye. Pearl described headaches that have occurred about once a week behind left eye – they used to occur behind right eye before illness. She takes a Darvocet to counter the pain – goes away the next morning. Next appt – Fri, 5/28/99, 10:40 am. (Nurse called to change app’t to 5/21/99, 10:40 am)
4/26/99 - Visit with Rheumatologist, Mon, 10:45 am - We gave Dr a copy of Pearl’s last two blood tests. Based on continued good blood test results (incl. sed rate), Dr reduced Prednisone dosage to 10 mg/day (5 in am and 5 in pm). He advised that sed rate should be checked every 4 weeks – wrote a prescription for the next blood test in two weeks (5/10). He wants to see Pearl in 4 weeks – May 24, Mon, 10:30 am. (Note: sed rate was 11 in test of 5/10/99.)
5/21/99 - Visit with Ophthalmologist, Fri, 10:40 am – Eye pressure measured 13 & 16 (<20 is normal). Floaters observed in right eye – can be normal aging process. Took a picture of eye and did a ultrasound scan – looked OK. Dr advised that right eye looks like it has improved vision by looking at the retina. Pearl said vision is unclear, and still only peripheral – color flashes occur at times. Dr said she can keep on with the Diamox and Alphagan since there may be some improvement happening, and as long as no side effects occur (kidneys) – monitor potassium since medication can affect level. Pearl noted that she has headaches on occasion sort of in the middle of her head, not behind either eye necessarily. They don’t feel like migraine headaches, but Darvocet doesn’t knock the headaches, just dulls them a little.
Next app’t in two months – Fri, 7/23/99, 10:20 am.
5/24/99 - Visit with the Rheumatologist, Mon., 10:30 am – Blood pressure was 142/80, advised nurse of medicine changes (added Allegra and Allegra-D, deleted some other allergy medications). Dr reduced prednisone to 8 mg (was 10) – 5 in morning, 3 in evening. Get blood test in 2 weeks (about 6/7/99). Dr doesn’t think Allergist should test for allergens until prednisone is stabilized. Next app’t in 4 weeks – Thurs 6/24/99, 11:00 am. Results of blood test taken 6/7/99: Sed Rate is high at 23 (normal range for Pearl was demonstrated to be = or < 10 in the first several months of GCA treatment); doctor reviewed results but isn’t changing Pearl’s prednisone dosage at this time (currently 8 mg/day).
6/24/99 - Visit with Rheumatologist, Thurs, 11:00 am – Blood pressure was 150/74; added Claritin to list of medications currently being taken regularly. Gave Dr a copy of blood test of 6/9/99 by the FPP. Sed Rate is 23. Pearl has had some headaches recently, took Darvocet for relief. Pearl has lower leg aches when walking around the block – had to proceed very slowly yesterday to make it home. Dr thinks blood pressure in ankles is lower than it should be – wants her to see a Vascular Specialist. Made an app’t for her with a Vascular Surgeon, Fri., 7/2/99 at 11:20 am. Tested Pearl’s blood today (results on 6/28/99 – Sed Rate was 20). Next app’t: Thurs, 7/22, 9:30 am.
7/2/99 - Visit with Vascular Surgeon, Fri, 11:20 am – low/no pulse felt by Dr in right foot; left foot pulse weak; both legs had good pulse at knees. Told Dr that Pearl had tests taken on 12/14/98 at the Hospital of carotid arteries and echocardiogram – results of both were favorable. He’ll get copies of reports. Ultrasound scan of legs will be done next Wed, 7/7/99, at 9:00 am in Dr’s office. Scan completed 7/7/99; indication that pulse is minimal in lower left leg – next app’t Tue, 7/20/99, 10:40 am.
7/10/99 - Hospital Emergency Room, Saturday – pain and slight discoloration (paleness) developed in right leg after laying down for a nap at noon. Tried to rub numbness and pain out of it but without success. Called Vascular Surgeon’s office and his nurse advised Pearl go to Emergency to get leg checked out. His nurse examined her there and requested she be admitted for observation over the weekend, then get an arteriogram on Monday. During the day and evening in the hospital the pain and discoloration (paleness) subsided and returned periodically – about an hour of pain and discoloration, then an hour of healthy pink appearance and no pain.
7/11/99 - Hospital, Sunday – Sed rate hadn’t been checked in 7/10/99 tests; called Rheumatologist who talked with the Vascular Surgeon and suggested sed rate be measured. Results: Sed Rate is 20, same level as on 6/26/99. Doppler scan of legs was repeated today – the Vascular Surgeon advised Monday morning that the results were the same as the scan done in his office last Wednesday (we don’t know what the results are).
7/12/99 - Hospital, Monday – Arteriogram was conducted on Pearl’s legs early afternoon. Vascular Surgeon called in Pearl’s discharge Tuesday, 7/13/99 and requested she make an appointment for following Monday to go over the test results. Subsequent call to Vascular Surgeon’s office resulted in their recommending Pearl come in Tues. for her app’t scheduled earlier – receptionist would confirm with Vascular Surgeon that Tues. was OK instead of Mon. (Before being discharged Dr’s partner came to Pearl’s room and advised surgery was necessary on her right leg soon, based on arteriogram results – also left leg has two of three arteries completely blocked.) At home, Pearl continues to have sore legs when she stands on them – discomfort goes away when she is seated or lying down. Appearance is good (pinkish). She received a large dose of steroids (> 100 mg) for the arteriogram – and was on IV potassium liquid continuously while in the hospital (3 full days).
7/20/99 - Visit with Vascular Surgeon, Tues., 10:40 am – Blood pressure was 130/80. Both legs have normal color at this time, and pain isn’t significant at rest. Dr described the arteriogram and doppler scan test results –
Left Leg: 40% blockage at mid-thigh of main artery, 100% blockage of the artery behind the knee, two of three lower leg arteries completely blocked, blood flow to foot is 72% at rest, 29% with exercise, all toes have pulse;
Right Leg: 100% blockage of the artery behind the knee, one of three lower leg arteries completely blocked, blood flow to foot is 108% at rest, 80% with exercise, all toes have pulse.
Advised Dr that the right leg is the one that is painful and was the cause of the hospitalization (the report shows it has better blood flow than the left leg). Also advised Dr that while in Emergency the right leg appeared to be somewhat in spasm – normal color would return and pain would diminish after an hour or so, then the discoloration and pain would return for an hour or so, etc.
He didn’t know what the cause of the spasms might be – could be cold, stress, blood pressure, low fluids, etc. He doesn’t think there is any tie-in with Giant Cell Arteritis or PMR. Pulse in the toes indicates vascular inflammation is unlikely, also that Alphagan (a vasoconstrictor) eye drops likely didn’t contribute to the problem. The Ophthalmologist stopped the Alphagan and Diamox last Friday in the event the Alphagan might be contributing to the leg circulation problem. They have not been needed for several months but he let Pearl continue with them as long as she thought they might be helping regain vision in her affected eye.
The plaque probably has been building up for years, and since there are no other obvious contributors (non-smoker, low serum cholesterol, no diabetes, low blood pressure, etc.) the cause is probably hereditary. Plaque likely is present in other arteries (heart, etc.) but it is better not to test for those until a problem presents itself in other areas – tests are invasive and could cause problems. The right leg spasms stopped by the next day – she was on potassium-rich IV all the while in the hospital.
Exercise is the cure – walking is best – build up distance as best she can. It may take 6 months to get to a reasonable distance. Some people run marathons with her amount of blockage. Surgery is not advised for her current situation – it could cause worse problems than she currently has. Two types of medication are available, but not recommended. One would dilate the blood vessels, but cause headaches. Another would make the red blood cells more pliable and pass through restricted places more easily but would take 6 months to have an effect. Pool and Spa are OK (Spa temp of 95 degrees is fine). Cycle-type exercise is good for cardiovascular system, but wouldn’t be as good as walking (treadmill) to reconstitute arteries. Arteries can reconstitute in a few days or several months. Dr gave us a copy of the arteriogram report and sent the Rheumatologist a copy. Next app’t in two months – Friday, 9/24/99, 10:00 am.
7/14/99 - Visit with Hematologist, Wed, 3:00 pm – Blood pressure in office measured very high again (typical of Hematologist office visits) – about 170/90 (measured normal at home a few hours before visit). Based on his review of the blood drawn in his office during the visit, and the blood test report of 7/10/99 taken in Emergency, Dr advised Pearl’s blood is as expected. White blood cell count at 15 is not alarming; platelets are reasonable. He expects the FPP will monitor B-12. He sees no need for intervention – normal follow-up in 3 months. Next visit Monday, Oct 11, 10:00 am.
7/16/99 - Visit with Ophthalmologist, Friday, 4:30 pm – Eye pressures good (14 & 15) – both eyes continue to be healthy, unchanged from last visit. – no further improvement in vision in right eye. Prednisone dosage is now at 8 mg/day (was 10 up to 5/23/99). Discussed Pearl’s legs circulation problem and hospitalization, and the arteriogram report. Dr thinks it unlikely there is a correlation with the Arteritis of the eye artery, but it is possible. The temporal artery is much smaller and much more susceptible to inflammation type blockage than the leg arteries would be. He deferred to the vascular specialist for what might be affecting the legs. He advised Pearl to stop both the Diamox and the Alphagan. The Alphagan is a vasoconstrictor and could be contributing to the leg artery problem. In place of the Diamox (caplet) he prescribed Trusopt, an eyedrop form of Diamox – 1 drop 3 times a day. Next visit will be in 8 weeks – 9/17/99, 3:20 pm.
7/22/99 - Visit with Rheumatologist, Thurs, 9:30 am – Blood pressure was 136/80. Described Pearl’s hospitalization to Dr. Currently her legs coloring looks good, but she continues to get pain when walking very short distances, mainly in her right leg. He reviewed the arteriogram report (I gave him a copy) confirming several areas of blockage in the legs. He reduced Prednisone to 7 mg (was 8) based on the sed rate of 20 measured last Sunday in the hospital. Prednisone increases atherosclerosis, so lower dosage is better. The Adductor Canal is a route through the knee muscle for the artery – this is a typical blockage point for leg arteries. The arteriosclerosis may be confined to the legs - heart or head might not be affected. Vitamin E @ 800 units a day, Vitamin C @ 500 mg and Niacin @ 500 units/day might be beneficial for the arteries. Niacin will make the face flush. Darvocet is good for pain – the narcotic is not as strong as percodan and some others. Reminded Dr that Pearl is allergic to aspirin (he thought that aspirin might be good too). Advised Dr that the Ophthalmologist stopped the Alphagan eye drops and Diamox – started Trusopt instead – he thought Alphagan, being a vasoconstrictor, might have contributed toward artery blockage. Next app’t in 4 weeks – Friday, Aug 20, 9:00 am.