MELISSA, scleroderma

In 1989 the world was mine. I was a Freshman in High School, a gymnast, and a dancer. I started noticing a pain in my wrists as I would be doing gymnastics. I went to my family physician and he took x-rays and said I must have arthritis. I went to a rheumatologist who treated me with everything from gold shots, to steroid shots, Plaquenil, and almost each and every anti-inflammatory known to man. I got better at times but not so much that I could do things that other young adults my age were doing. I got frustrated. I kept taking the medicine, quit gymnastics, did therapy for my hands, and decided to make the best of a bad situation.

In 1993 I graduated from High School and went on to college. I went to a school in West Virginia two and a half hours from my house and my doctor. My doctor figured that I was doing well. My bloodwork was good so he said that I could go with the stipulation that I would come back on my breaks and get bloodwork and see him.

Shortly after I left I started to get worse. I had trouble walking, I started sleeping 15 hours a day, and I was choking on everything I would eat. I went to the college physician and he said I had scleroderma. I had no idea what that was. I thanked him and went on my way, I was happy to know I didn't have mono! He gave me some pills for gout, (I can't remember the name) and I started taking them.

By mid-semester break I was horrible. I had lost 30 pounds and was down to 67 pounds. When my Mom saw me she started crying. I knew I had lost weight but the fact that she started crying scared me. By this time I was weak and tired. My once flexible body could not touch my toes to take off my socks. I used to sleep in the same clothes for days because taking them off was too much trouble. I was glad to be home and glad to go to my doctor and get bloodwork. Thanksgiving went by and I was ready to go back to school. My Dad dropped me off back to school and then I went to class the next day. When I got home from class there was a message from my Mom on the answering machine. I will never forget the sound of her voice and what she said, "Dr. Katz got your bloodwork back and he told me to come get you." Come and get me, I thought. I just saw her yesterday.

She did come and get me, she came and took me straight to the hospital. I thought she was crazy. I wanted to finish my classes. She did not tell me why I was going but that my muscle enzymes were "really high." At first I thought that it could be a good thing, but after she drove two and a half hours to get me when she has a fear of driving places herself I knew it must be serious.

I saw my doctor the next morning. He told me that I would be in the hospital for a while and that he needed a muscle biopsy to see what was going on. He thought scleroderma but they needed to know for sure. I told him I did not want to be there. He told me to lift my head from the bed. When I struggled and couldn't he told me that was the reason I could not go home. I had the biopsy, they put me on 35 mg of Prednisone IV and I stayed in the hospital on the cardiac floor for 7 days. I went home with a heart monitor because they thought that I would have heart trouble because of my elevated muscle enzymes.

When I went home I was happy! I felt like everything was going to be okay. I talked to a friend whose mother was a nurse and she told me that, "People with my condition usually don't live that long." I became reclusive. I did not go outside. I thought that I would die, die before I had ever lived! At that point I had not gone on a first date or even been kissed. I thought, at that point, that I never would. I stayed on prednisone for 2 1/2 years. It was horrible! I was getting better but slowly. One year into my treatment my doctor decided to add methotrexate. I had heard all of the horror stories and did not want any part of it. Reluctantly, I took the medicine. My face swelled and my spirits sunk.

The prednisone made me moody. I would blow up for no reason. It made my face swell and I looked terrible. At this point I wanted to die. I figured no one could love me the way that I looked and that was enough to make me want to die. The methotrexate made my hair fall out. This was the icing on my cake. I started looking desperately for another way.

About three years ago I met Chris Adlard. I was looking on the web for sites on scleroderma and I happened upon her. I wrote her a letter and told her about my situation. She told me how people are treating scleroderma with antibiotics. I thought that it was too good to be true. I showed the research to my doctor and he thought that I was crazy. After about 3 months of begging he wrote me a prescription. He told me that I could only take the Minocin if I stayed on the methotrexate also. This to me was a trade-off that I was willing to make. I started feeling better on the Minocin. After about 6 months I decided that I wanted off the methotrexate. My doctor said "no."

After he refused, I asked him how I would be able to wean off it when he "let me." I did exactly how he said, without telling him, and came back methotrexate free and asked him how my labs were. He said, "They are perfect." At this time I didn't want to tell him what I did because I knew that he would disagree and try to get me back on metho. The second month I went back to him and asked him how my labs were. Again, he said, "Perfect." The third month I came back and I told him what I did. He could not believe that it was the Minocin and that I was in remission. He told me that next month I would be in horrible shape.

The next month came, the next year came, and I have never felt better. I believe that it is the Minocin that is keeping me healthy. That and my exercise and new attitude about life. I don't take my days for granted. And for that I am thankful for scleroderma and Minocin. I hope this helps!

Melissa


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