My name is Donna Celeiro, I am 71, and live in Saugerties, New York (USA). I have had systemic scleroderma for 50+ years; it took me an unbelievable 27 years of searching and trying countless doctors/hospitals/tests/medications and listening to numerous thoughtless/sarcastic/insulting remarks about seeing a shrink, I am doing much better than the “death sentence” I was originally given in 1997 by my first rheumatologist.
After 4 or 5 years of various oral medications, methotrexate injections, occupational/physical therapy, and other forms of treatment (which did not help my condition), I heard about Minocycline. I told my rheumatologist that I wanted to try it; he refused to prescribe it as there was no proof of efficacy, just anecdotal information, and he told me NO, minocycline was out of the question. Since he had given me a virtual death sentence and other meds had not really helped, I was determined to get minocycline despite his decree. I told my primary care physician that I wanted to give it a try; he was on my side, saying that minocycline is only an antibiotic and shouldn’t be a problem. Well, I have been taking 100 mg twice a day for about 15-16 years and the changes in my scleroderma have been phenomenal. The only negative effect is my skin has turned blue-ish (literally from head to foot), but the trade-off is worth it, at least for me. I feel so much better and will take minocycline for the rest of my life.
The differences I have experienced are life-changing, letting me enjoy life more than before, but scleroderma continues to do its damage. I had a severe silent heart attack; all of my heart’s coronary arteries were destroyed, with irreparable damage. All I have now are tiny collaterals my body made in self-defense; they cannot do bypass, stent, nor any other procedure to fix my heart. In 2013, I had a TIA. Shortly after, I developed vision/memory/balance problems; I now have a neuro-ophthalmologist. Tests, scans, MRI, etc. of my brain show hardening and limited blood flow to the regions that are responsible for vision/memory/balance. Despite that, I am glad that I take minocycline.
My rheumatologist stopped seeing me after 7 years of being my doctor; he was angry that I went to my primary for the minocycline. Had I accepted his opinion, I doubt that I would feel as well as I do. Unfortunately, he is cheating other scleroderma patients out of possible improvement because he is stubborn and self-important. Oh well……I would do it all again! I tell other scleroderma patients about my personal experience but advise them to research on their own, since no two people are the same. I wish more doctors would be open-minded and prescribe it openly instead of patients doing without or having to go underground. Good luck to all who suffer with this terrible disease.