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About Susiebuilder

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  1. My 18 yr. old son was diagnosed with limited systemic scleroderma two years ago and has remained very active. In fact, he has an athletic scholarship offer for college. However, as a senior, he has been late to school almost every day, sleeps a lot, and isn't anxious to train as much as he needs to. Yesterday, he told me that some mornings he just can't move very well and is in pain. He says it isn't really muscle pain, but just pain, and it is hard for him to get up and get moving. He is on 12.5 mg methotrexate injections each week and takes folic acid and vitamins. He has raynaud
  2. Does anyone know if there are any college scholarships for kids with scleroderma?
  3. We are from Utah and took my son to see Dr. Furst last fall. My son is 17 and had been diagnosed with scleroderma in April, 2006. Dr. Furst was wonderful. He starts his day at 4:00 a.m. Our appointment was at 7:00 a.m. He verified everything our local rheumatologist had told us and lowered my son's dose of methotrexate since it made him sick occasionally. Dr. Furst said that half the dose of MTX would do just as much for my son, and it has. It gave me a good deal of confidence in what we were doing, and my son is doing very well. Susan
  4. Hi, Helen, my son is on a 12.5 cc injection of methotrexate once a week. It has done wonders for his skin. He has been on it about 8 months. He does have side effects. It has lowered his immune system and he gets lots of colds. He does get sick from it occasionally--headaches, dizziness, diarrhea, fatigue. But he is able to play competitive soccer and work out two hours a day and go to school full time. The methotrexate has loosened his skin, removed most of the dark bluish morphea spots from his trunk, increased his range of motion in his joints, and improved his Raynaud's. He i
  5. Hi, I just saw your message. I have a 17-yr old son who was diagnosed with limited systemic scleroderma last spring. He had morphea on his chest, lower torso, and upper arms. He has been on methotrexate for about six months, and much of the morphea has disappeared, but not all. He has had some bad side effects, dizziness, headaches, and I believe he gets sick more often (like colds). We took him to UCLA in November, and Dr. Daniel Furst said he could probably get the same good results with a lower dose, so we cut his dose in half, from one cc to .5 cc. He had had fewer side effects
  6. Hi, my son was diagnosed with Limited systemic scleroderma last spring when he was 16. He is on MTX, has seen a specialist at UCLA and is doing very well. We are very happy with our Rheumatologist here in Utah. There is a great site for kids with Juvenile Rheumatic Diseases. It is a Yahoo group. I don't have the exact site, but you can find it pretty easily. I have gotten a lot of good info there. Susan
  7. Hi, my son has been on MTX injections (25mg once a week) for about four months. He had a very bad reaction to the first shot, so they cut it way down and worked him up to the full dose. Now, he has very little reaction. He skin is loosening somewhat, and his morphea is going away. He occasionally has some lightheadedness and occasionally a headache for part of a day. He takes it late Saturday, so he has Sunday to get over any side effects if there are any. Good luck, Susan
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