I'm a fifty-three-year-old woman. When I was twenty-one my illness began, my fingers turned white and I had pain in my bones. The diagnosis was Raynaud's Syndrome and I was cured with vasodilators.
After about a year I stopped the therapy. Many years went by and when I was about forty I began to have pus that would harden in the tips of my fingers and digestion problems (acidity, reflux and a feeling of having my whole digestive system blocked). The situation would only be better when I had diarrhea. I also had problems with my legs and it was really painful to do simple things like go out in my car; I thought I had rheumatism.
The situation in my hands got worse, and I couldn't take the pain, even when I just touched objects lightly. So I had a medical check and I was diagnosed 'Mixed Connective Tissue Disease related to Scleroderma '. Therefore I began an infusional therapy with ' Iloprost' with cycles of 10 days (6 hours of daily treatment) every four months. I saw an improvement, especially with my mobility problems, the calcifications in my fingers slowly diminished, but the gastric disorders remained, I also had plate-like calcifications on the inside of my knees, and some smaller ones in my elbows. They also did a a mammogram, and they found small calcifications. I get tired easily and I am not sure if this is because of the illness.
In my opinion, the doctors at the hospital where I have my therapy don't know much about the illness, and the only tests they run are blood tests for antibody research, every once in a while a capillaroscopy, and an electrocardiogram before each therapy. I don't think this is enough, also because I don't know my progress and how my other organs are doing.
But then I think, if this is the cure, what's the use in knowing it? At least I lead a calm life. I should say that, in spite of everything, I would consider I have a good quality of life. I only have a breakdown when I have to go to therapy (on the 30th day is the begining of the cycle) and when my fingers hurt (like right now), I scream in pain and I am nervous, so I came online to see if there are better cures. I ask if anybody knows less invasive and stressful therapies than Iloprost and, more precisely, if anybody has gone from this therapy to a newer one. Also, which tests are normally run for the illness. Thank you.
Email: [email protected]
Story edited 01-27-06 AL
Story prepared 01-27-06 JTD
Story posted 01-29-06 SLE
Translated to English 01-28-06 AL
Email verified 02-01-11 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Story Translator: Alba León
What is Scleroderma?
(Italiano) Gipi: Raynaud's, Sclerodermia
(Italiano) Fenomeno di Raynaud
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
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