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sis

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About sis

  • Rank
    Bronze Member

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  • Location
    Virginia
  1. I am in the process of starting to new medication called cyclophosphamide. I would like to know if anyone used this medication before and how long did they stay on it before they started seeing any good result and how did it make them feel. Did they have any side affects? I have been using Mycophenolate for awhile (1 1/2 years) now and the skin is still the same. Did anyone used something else that helped? I am very confused because I am feeling better and have more movement in my body. Please help Thanks
  2. "HUGS WHAT MAKE THE WORLD A BETTER PLACES" A BIG HUG TO EVERYONE :emoticons-yes: LOVE YOU"LL Always Sis
  3. I am a patient who was diagnosed with diffuse scleroderma about a year ago. My skin became tight all over my body. After the skin became tight, the itching came then the discoloration of my skin showed up. I am dark skin person, with large light patches (that look more like vitiligo) on my arms, neck, legs and back. I would like to know if anyone in this forum has the same problem and what did they used or what did the doctor prescribed to clear-up these patches.
  4. sis

    Medication

    Thanks Jan for this information, it is a big help and make me feel better about taking this infusion. I can deal with the inconvenient as long as it makes me feel good. I also hope it works for me like it has worked for you. I will let you know how I do with it. Again thanks.
  5. sis

    Medication

    My understanding of Cellcept was to help soften the skin and help with muscle weakness and joint pains but my skin stayed the same, so they decided to change me.
  6. I just returned from doctor and my skin is not getting any softer. I was using (Cellcept) for approximately 10 months. Now they are changing my medication to this IVIg (intravenous immune globulin). I would like to know if anyone has used this medication before and did it help with the skin, joints and muscle? Tell me how you felt about this medication, how did it make you feel after taking it. How long did you take it before you saw a change in your condition? Anymore information will be greatly helpful and appreciated.
  7. Thanks for everyone responds. It is nice to know that people on this forum is willing to help and give advice. I am glad I found out about the website.
  8. Hi Sharon Thanks for your reply on hair loss. I will send you an PM for the shampoo and treatment that helped you.
  9. Thank for welcoming me to this forum. I am seeing an sclerderma expert and was prescribed medication for the itching but it seem to make me sleepy and very little help with the itching. I have a lot of hair loss and was told that it will not come back. Just wondering if anyone else have the same problem. Thank for your recommedation on the itching.
  10. I am new to this forum and new to scleroderma. About 10 months ago, I was diagnosed with diffuse scleroderma and it has been a roller coaster ride ever since. I started with the tightness of the skin, the itching, the discoloration of the skin, the hair loss and now back to the itching. Can anyone help me, I need advice on what to use or take to stop the itching and the hair loss. This is driving me crazy. When I take a bath, I start to itch. Any type of wet or dampness will make me itch.
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