I was diagnosed with diffuse scleroderma two years ago. I have been hospitalized a couple of times, mostly for tests or for vomiting blood. I am on Nexium for the reflux and can eat and keep down food and drink. I was unable to before the nexium and was in agony with the acid reflux.
To cut a long story short I am writing this because I would like to at least try to suggest a small ray of hope for other sufferers of diffuse scleroderma. One year ago my skin was as hard as leather. I could not put my head back due to the hard skin on my neck and upper body. My hands were almost "fixed" into a crab shape and I could not type or do most things. I was hopelessly depressed and angry. I had to give up my career due to the fact I no longer had the stamina to get through the day. I was only working in an office but I was getting too tired and breathless and I could not do it. I used to walk miles bird watching or exercising my Lurcher, but could no longer even do that.
Okay, now moving forward. In June of last year, I went to see Professor Carol Black 's team in the Royal Free Hospital in Hampstead, England, as my local hospital could not treat me as effectively as they believed London could. They were right. I am needle phobic by the way and, trust me, this does have a bearing! I was told that the diffuse scleroderma I had was very aggressive and that I would need to be admitted right away and had to have an infusion (drip) of Mycophenolate Mofetil (Cell Cept) daily. I said, "No way!" as I could not stand the needle. So they compromised and gave me the drug in tablet form. I came back to Derby and dutifully went to the hospital for the follow-up tests. You all know what I mean I am sure. I was also on Prednisolone, and Quinipril.
Now then. I, like maybe some of you, have visited as many web sites as I could find regarding this disease. Most of them seem to offer very little hope or remission stories. Now I know that I have a disease for which at present there is no cure and that things can always get worse. BUT. At present as of September 2004, I am off the Prednisolone. I no longer take the Cell Cept. My skin on my arms, legs, neck, face, in fact everywhere where it was thick and hard before, has reverted to normal, like it was before all this hit me. I have more stamina and now am back going for walks and bird watching quite happily. I am planning to return to work in the spring.
I know that all this sounds 'whoopee for me', but all I am trying to say is that sometimes it gets better. I was told by Dr. Denton (in London) that diffuse scleroderma can reach a plateau after about eighteen months to three years and the symptoms can settle down. Also he said that usually if things are okay on the outside (skin joints etc) then it can be that things are settled on the inside too, if that makes sense.
If you want proof—I have typed this out. I could not do this last year. I feel that some people may like to hear a slightly more hopeful story for a change.
~ Update 05-07-05 ~
I would like to offer hope to all patients with this disease.
I was diagnosed in 2002, as having Diffuse Scleroderma. I have been on celcept and nexium and have been in the hospital four times.
The skin on my arms, throat, chest and face was thick, hard and unyielding. I was referred to Professor Carol Black's team at the Royal Free Hospital in London for treatment as my own local hospital was unable to treat me.
To make a long story short, all of my skin is now back to normal. I have no pain, no problems with internal organs and no threat for that happening.
The team there was very surprised at this reversal and could not really explain it. So there is hope!
Mental attitude is all, and I also think that the high levels of Vitamin B complex, multi-vitamins, and cod liver oil may all have had a part to play. I am now going back to work and functioning one hundred percent!
Please try and keep the thought that it can get better. I am proof of that.
Email: [email protected]
Story edited 09-27-04
Story posted 09-28-04 SLE
Story update submitted 05-07-05
Story update posted 05-23-05 SLE
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SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.