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Doctors' Answers to "Frequently Asked Questions" - Sarcoidosis


These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An indi vidual patient is always advised to consult their own physician.

[posted 06/28/2000]
Question: I have been taking Plaquenil to treat sarcoidosis of the skin and it appears not to be working. What drug would you suggest that could be used to treat successfully? I have previously had sarcoidosis of the lungs and currently have chronic HCV. I have been treated twice unsuccessfully. Thank you.

Answer: Generally steroids, but this would be in the absence of HCV. Hard to know, topical fluoridated steroids might be of help.

[posted 03/8/2000]
Question: I've been sick for about 2 years. Constant sinus infections which would lead to a bad cough and then to broken ribs from coughing. Diagnosed with ostreoporosis 7/99 then Sarcoid by way of biopsy 12/99. I don't know the side effects of Prednisone, but I have weird things happening to me that my doctor doesn't really dicuss with me when I tell him. He just changes the dose of prednisone. I started at 40mg everyday, then to every other day, now I'm at 30mg every other day.

Brief Family History: Dad had 3 way bipass & heart defibulator installed and is a 4 shot a day diabetic. Mom has had congestive heart failure and pulmanary adema then a stroke.

What is caused from prednisone vs. the disease sarcoid? Is there a list of side effects from prednisone?
My face swells, night sweats, my heart really jumps around in my chest and arythmia kicks in along with hard beats, eyes can get real dry and sometimes sting and are red, I get ssooo angry like I have never experienced in my whole life, my chin & bottom lip tingles when I touch my chin, I can't sleep, constantly have to clear my throat of mucus, my hands sometimes (rare now) shake and I lose my side view vision sometimes when my heart jumps and flutters. My breathing tests say I breath at 48% so I lose my breath, alot and I have zero energy. My personality has gone from happy go lucky to snappy, snotty and forgetfull.

Answer: There are several questions about side effects of prednisone on the FAQ section. Basically, it increases the rate of the body's aging. It causes multiple problems, cataracts, hardening of the arteries, osteoporosis, weight distribution, round facies. You do not mention any treatment for the osteoporosis. I assume you are taking Fosamax or Miacalcin with the prednisone to minimize further bone loss. Also, some patients with sarcoidosis experience difficulty with Vitamin D metabolism. Ensure your md has checked a 25 Vit D level, if low supplementation would be necessary.

[posted 01/26/2000]
Question: My son and his wife choose not to vaccinate their children against and diseases. My question is since I have active Sarcoidosis and am taking Predisone, and if they come down with either measles or chicken pox and I am exposed, will it endanger my life? Thanks Diana

Answer: Probably not, there is some suppression of your immune system. But, in clinical reality, one doesn't see the number of infections that are theorectically possible. Assuming you have had these diseases, you should be ok. I would avoid intimate contact, otherwise act normally.

[posted 10/13/1999]
Question: Statistics:

White/Male of European Descent
Age: 36
Height: 6' 3"
Weight: 220 lbs.

Notable Missing Parts: I had a Splenectomy when I was 5 because of a Bike accident (Trauma)

Current Medication: Prednisone 40mg/Day

Background:

I was diagnosed with Pulmonary Sarcoid in the Spring of 1996
. My symptoms were high fevers at night, swollen joints
(fingers, knees & ankles) and enlarged lymph nodes around
my lungs. I was put on Prednisone for 6 months (Started
at 80mg) and all the symptoms went away. The fevers/
swelling in my joints went away almost immediately.

Current Problem/Question:

About 1 month (9/5/99) ago my ankles started swelling up
again. There hadn't been any changes in my workout
schedule so I don't think I pulled something. There isn't
that much pain (and no fevers) just a lot of swelling and
some discoloration (only around my ankles). The swelling
starts just below my knees and is more noticeable on my
left leg. My face is also a little swollen in the morning
but that goes away as the day progresses. I went to a
doctor and had a Chest X-Ray, Breathing Capacity, Sed
Rate and ACE test. I don't know what the results of the
tests were but my Doctor put me back on Prednisone
40mg/Day. The thing is my symptoms (Swollen legs/ankles)
aren't going away. I've been on 40mg for a week now and
no change. I hate being on Prednisone and if it's not
doing any good I'd like to stop taking it. Also, Are
there any other diseases I should be looking at?

Answer: I would check your ACE levels to see if the sarcoid is active. This seems to be what your md is treating, but if the ACE levels are low, would seem to be another problem. Sarcoid is difficult to track-in terms of it's activity. But, this is about the only test available that let's one keep track of the sarcoid. The first question is whether this is the sarcoid. Then focus on other possibilities.

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