Richie's Story

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I am relating my experiences with Systemic Scleroderma to demonstrate to other folks that while scleroderma might be incurable, there is effective treatment available that offers relief and reversal of many symptoms. It should no longer be looked upon as a hopeless disease.

After a lifetime of very good health without ever seeing the inside of a hospital since age 13 {appendix}, in 1999 at the age of 59 my blood pressure was elevated. My internist prescribed Cozaar ---Two months after starting. Swelling began in hands and fingers. My first reaction was that the blood pressure medicine was causing edema. I changed blood pressure medicine with no success in reducing swelling. November 1999 swelling went to ankles, knees and legs and I commenced a diuretic. After no change, I saw a rheumatologist and underwent the normal battery of blood tests including scl-70, anti-centromere etc. -All tests were negative. After many visits to a rheumatologist without answers -I had heart and kidneys checked with a cardiologist -all results were negative.

As time progressed skin started tightening in legs along with swelling becoming severe along with severe finger swelling and contractures starting. I then proceeded to be sent for physical therapy -this actually aggravated the situation. Finally, in the summer of 2000 -it was suggested I see a doctor who at the time was very involved in studies on a drug called Relaxin -at this point in time the word Scleroderma was used -the rheumatologists body language and attitude suggested this was a very serious disease with only one direction –buzz words like “base line” -etc started getting thrown around. At this point, my wife and myself decided to reach out for more advanced or even more radical approaches to treating this illness as commonly used medications evidently did not help the situation. The hardness was progressing up my arms and legs and Raynauds was developing as well as severe wrist problems along with many other areas that swelled.

In Sept of 2000 we went to Boston to see a doctor who had success on a very very small group of patients using antibiotic medicine. A definitive diagnosis was made of progressive Scleroderma at that visit –antibiotic was prescribed along with very definite instructions as to the taking of the medicine. While the Raynauds started getting worse, after three or four months the fatigue started lifting. Some very slight improvement in hands at about the eight-month mark ---developed GERD at about one year into treatment. Visits to the Boston rheumatologist were at six-month intervals these were supported by monthly visits to my local internist where lungs kidneys and liver was monitored. After about one year on the antibiotic improvements started in earnest. Swellings started reducing quite a bit, skin started loosening. Nexium was prescribed by my internist for GERD. A calcium channel blocker was added for the Raynauds ---I had been taking an ACE inhibitor for blood pressure control, which I continued.

We will now jump ahead to the present -the only symptoms left are very mild Raynauds and very mild contractions -I can almost close my right hand completely and the left about 85 % --hand strength has returned -no progression into lungs or kidneys {I do feel the ACE inhibitor and Calcium channel blocker have been very instrumental in this area} along with the antibiotic -I fully anticipate even more improvement to 100%. The internist is visited every 3 months the rheumatologist in Boston now is once a year -but he is readily available for any problems. To sum up -----I feel good - enjoying life - no restrictions - no limitations.

Medications being used:

Minocin brand of minocycline20

Zestril ---ACE Inhibitor

Adalat CC ---Calcium Channel Blocker

Nexium---anti-GERD

Acidolphillus20
No special diet -no vitamins -no other supplements

Rheumatologist ---Dr. D. Trentham Boston Mass.
Internist ---Dr. F. Espino ---Long Island NY

R.S. Long Island NY ---USA20