Jump to content
Sclero Forums

Meg

Members
  • Content Count

    4
  • Joined

  • Last visited

About Meg

  • Rank
    Newbie
  1. This is a great question ... and one I just discussed with my pulmy after being on Cellcept for 2 year's. I asked, "When can I expect to stop taking cellcept??" Sorry to say (for all of us in the same situation) that he had no answer. AND, I like this doctor and consider him a sclero "expert" at UCSF. He was honest with me and said that, since cellcept has been given to SD (and lupus) patients for such a short amount of time, he has no data about what happens with patients coming off of it. I have diffuse SD with lung involvement and my DCLO has been somewhat stable at between 57% - 62% since starting the cellcept. Also, my skin and joints got quite a bit better and have remained OK. I am a little afraid about being an experiment and stopping the drug to see what happens.... but I guess that is what I am going to do. After my next PFT next month (providing it is still in the same range), my pulmy and I have decided to reduce my dosage by 1/2 and SEE WHAT HAPPENS! I will be happy to report back with the results and appreciate hearing about any similar experiences out there. The only meds I take is cellcept and lisinopril (ACE inhibitor to protect my kidneys). Also, I should mention that I am also careful with my diet and take good vitamins & supplements too. Maybe this also is helping. Who knows?! Best wishes for a happy ending to the experiment! Meg
  2. Heidi, happy to hear that your health is stable and hope that whatever is complicating your live passes by quickly. You have been wonderful and warm hearted to so many and your kind words and advise have helped me greatly. Thank you for all you have done here! Best wishes and big hugs, Meg
  3. Hola Jen! I had to do some homework for this ? and look through my initial testing (done 2 year's ago this month---hard to believe!). I have a positive ANA --pattern being "Speckled, Diffuse, Nucleolar, Cytoplasmic staining". My SCL 70 test was also positive showing Antiscleroderma 70 Antibodies: 570. Though I didn't know what any of this meant at the time, I found out soon that it was indicative of diffuse SD with a not-so-good-prognosis. I also soon found out that I had early lung involvement (also not pointing to a great prognosis) but I can happily report that even with a firm diagnosis of diffuse SD WITH interstitial lung disease, I am doing really well 2 years later. YAY so far! Maybe due to the Cellcept, maybe to healthier living, maybe due to nothing that I have any control over. Whatever! I think it is great to question test results and find out as much as we can about our disease, but also remember that the tests don't always give us any FOR-SURE answers (which is what I wanted at first). Now, I just try to stay positive and not worry about what could happen or the results of the round of tests. (Remind me of this before my next PFT!). Big hugs and kiss the puppies for me. Meg
  4. Janey, I haven't posted in so long, but I just had to reply to this one and wish you the best of luck on Friday. I will be sending good thoughts your way, count on it! I was also faced with decisions re; meds and procedures (as most of us have been) and have been OK taking Cellcept for almost 2 years. I haven't had any bad side effects and my lungs have not shown any progression. According to my pulmy, other sclero affected patients he is seeing have shown improvement on Cellcept. I hope that is the case for you. You have my best wishes! Meg
×
×
  • Create New...