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Thread: Looking for advice on Cellcept

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    Question Looking for advice on Cellcept

    My 15 year old son has been on Cellcept now for 5 years and praise God has been in remission for 4 years. He was diagnosed at the age of 10 with SLE and Lupus Nephritis class IV. He received 3 Cytoxan infusions and was on Prednisone for 1 year. His original dose of Cellcept was 1500 mg per day and he is now down to 1000 mg per day. We are feeling conflicted regarding where to go from here. We would like to see his Cellcept tapered further because of the possible side effects from long term usage but of course we are fearful of a flare as his doctor has told us that in the past patients that he tapered have had flares that have been hard to get into remission again. Cellcept has been a blessing for us but it is hard to decide what to do at this point. Each choice has consequences- potential side effects if continued vs. potential flare if tapered. I know there is no way to know how much a role the Cellcept is playing in his remission but I would love to hear experiences or opinions from others regarding tapering Cellcept at this point. Thank you so much.
    Last edited by KCsMOM; 06-26-2012 at 06:11 AM.

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    sorry i am not on cellcept.
    but i would like to add acomment.

    if the lupus is being controlled by cellcept.
    and his health is good.
    tapering slowely and under a watchful eye sounds the correct thing to do.

    i spent 2 years in good health on a high dose of methotrexate.
    under the advice of my rhuemy, i lowered the dosage.
    we watched for certain things, as signs of a flare.
    i am happy with the lower dose.

    i have followed kc's progress through this site.
    i believe lowering the dose of cellcept to be a good step to take.

    i wish you luck, and hope others will reply.

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    I don't have any specific advice as I have just recently started cellcept myself. I think steveb has the right idea!

    Just wondering if your son's name is KC? My little brother's name is KC. Is stands for Kenneth Colin, but he has always been KC!

    I think he is lucky to have such a caring Mom!

    Good luck!

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    I've only been on cellcept for a year (I was on it for a few months one other time) and it too has been a life saver for me! I agree with Steve that if his doc is watching how he is doing while lowering then it would be ok. If he starts to seem like he's not doing well his doctor can always up the dose again. My rheum hasn't mentioned to me how long she plans to keep me on the cellcept, but I'm not even all the way off my steriods yet so I don't think it will be for awhile.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    Quote Originally Posted by Chesterwin View Post
    I don't have any specific advice as I have just recently started cellcept myself. I think steveb has the right idea!

    Just wondering if your son's name is KC? My little brother's name is KC. Is stands for Kenneth Colin, but he has always been KC!

    I think he is lucky to have such a caring Mom!

    Good luck!
    Those are his initials but we call him by his first name, Keith.

    Thank you for all your responses. I feel so blessed that he is doing well. His labs came back perfect today but his doctor has advised me that he wants to wait before reducing again. His dosage is low so I will just thank God each day for his health and hope that it can be reduced again when he goes back to the doctor in 3 months.

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    I have been on cellcept for over 6 years now, still too unstable to be completely off of it. I found it has helped and even though it's really hard on your stomach its better to be overly cautious when tapering.
    P.S I get my cellcept for free through the company, you should look into it you might qualify. And I didn't have to go through a bunch of hassle or wait more than like 10 days once I had to application in.

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    Quote Originally Posted by Mica View Post
    I have been on cellcept for over 6 years now, still too unstable to be completely off of it. I found it has helped and even though it's really hard on your stomach its better to be overly cautious when tapering.
    I am so glad you responded Mica because I have never come across anyone who has taken it as long as Keith. I am glad it has helped you. I agree with you that it is better to be overly cautious. It was 5 years ago this week that my son was diagnosed. His first year was the hardest due to Cytoxan and Prednisone but he has been so healthy since then that I think I was becoming overly anxious. His doctor has said that many times if it is stopped and then there is a flare, it can be much harder to get into remission again so we have made up our minds to be patient.

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    My son was diagnosed last summer with SLE and Lupus Nephritis IV. Hit him hard with cytoxin, prednisone, etc. Was in the hospital for 7 weeks. He has been on celcept for oh, about 6 months now. 1000mg in the a.m. and 750 mg. in the p.m. His labs have been, dare I say, great! His dr's are very happy with his progress! He also has TMA in his kidneys, so is also on an infusion of Soliris every 6 weeks (along with solumedral and pantamodine). He was a very sick boy. Now down to 10 mg of pred. every other day. As the year date approaches, I am starting to think back and see just how far he has come. Last summer he played baseball in pain and being fatigued and no appitite. Now, he about had me crying when he played HIS first ballgame and he hit it out center field!
    Celcept has been good for him. Rhumy doesn't say much about lower his dose and right now I don't question a lot of what's decided. I would agree that a slow taper is the best. Good luck!!

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