Author: Kathleen Stuart (65.121.96.---)
Date: 04-24-03 17:00
Tom -
Just another "cardiac" weighing in - my symptoms since the beginning have been chest pain and shortness of breath; chest pain always in the same place - for almost 4 years now. The only test at the beginning that was positive was a stress thallium - which was positive both EKG-wise and radiologically. Other than that, my echo was fairly normal; subsequent EKG's were fairly normal (with some sinus arrhythmia) and mostly tachycardia.
I have been declared fit by multiple cardiologists, yet I still have chest pain, SOB and profound fatigue. My latest echo, almost a year ago, showed pulm hypertension and an enlarged left atrium - again, declared normal by the "experts" that be. I was told cardiac sarcoidosis was very rare, and therefore it was "unlikely" that I would have it. I was also told that it would affect ventricular rhythms, so again, I "probably" didn't have it.
My ACE was in the 80's, and my c-reactive protein has been elevated during the entire time - a definite sign of inflammation. I am currently taking beta-blockers for my heart symptoms, and the Minocin and Benicar regimen recommended in this site - and I am feeling much, much better.
First, I think that "cardiac" sarcoidosis is much more prevelant than the "experts" think - as Trevor notes, it is an inflammatory response, and obviously, from these multiple posts, occurs in more patients than "they" think. (I note "cardiac" because I agree with Trevor that sarcoidosis is sarcoidosis is sarcoidosis (to shoplift a phrase) and symptoms appear everywhere, thereby eliminating the need for "pulmonary" and "extrapumonary" monikers - and hopefully, eliminating the ever-present "ABNORMAL" sarcoidosis!!!)
Second, I personally begged for prednisone three years ago - I have a family history of sarcoidosis, and at the time, it was the only treatment we knew of...my doc agreed, and gave me high dose (60 mg) for several months. If I only knew then, what I know now....and I know my doc feels this way...he is concerned that the steroids I took have given me damage that will last the rest of my life. I think the hardest thing was going off of them - the excrutiatingly slow decrease (which is medically necessary, as some body systems shut down and need the opportunity to kick back in; it also can affect you mentally) - and the not feeling any better as the dose got lower, and not feeling any better once I was totally off of them. I understand now why that happened - but it was very difficult to go through.
As Belinda stated, the decision of what treatment to pursue is completely yours. I wanted to share my experience, and that while I felt somewhat better on prednisone, the drug has an effect that is like a "high", and there is no evidence that it actually medically helped me, and evidence that it did hurt me...As she suggested, doing your own homework and looking at all the alternatives will help you decide on a treatment you are most comfortable with.
Best of luck and take care,
Kathleen in Wyoming
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