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Thread: CellCept for SLE?

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    Question CellCept for SLE?

    Has anyone been prescribed CellCept for SLE, with no kidney involvement? My rheumy has only prescribed Plaquenil, and it's helped a lot, but I've reached a plateau and I believe I can be doing much better with a different medication. She suggested methotrexate, but I'm very reluctant to go on that because I need to be able to keep working full time, and I'm afraid with mtx I won't be able to. So I've been looking into CellCept, and it seems like something to consider, although the risk of lymphoma scares me. And isn't there a new generation form of CellCept that is easier to take? I think I read about it somewhere, but can't remember the name of it now. Any thoughts before I see the rheumy in a couple weeks? I want to go there with as much information as possible.

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    I am taking cellcept for 12 years 2000mg a day without organ involvement. what are ur symtoms?

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    I've been on CellCept for a little over a year (2000mg/ day). I was on Imuran before that and Plaquenil before Imuran. I, unfortunately, haven't been helped much by the CellCept. Now I have kidney involvement, as well as some other major problems so I'm seeing a new rheumatologist because my old rheumy thought I should double my CellCept to 4000mg/ day and double my prednisone to 60mg/ day, and I just couldn't handle that!! The new rheumy thinks I should try Rituxan infusions.
    BUT, I know someone else who has had really great results on CellCept, so just like the rest of the disease.... everyone is different. Good luck though.

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    Instead of Rituxan infusions try Cytxan IV infusions,,Rituxan infusions has too many issues... such as activating JV virus

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    My lupus has gotten extremely severe, so I'm not going to do Cytoxan infusions, because that would make me inelgible for a Cytoxan Ablation, which is what my doctor said I may have to do if Rituxan doesn't work. The Cytoxan Ablation is done at Johns Hopkins, but you can't have it done if you have ever received Cytoxan in the past.

    The ablation is really drastic, but in the last three years I've never not been in a flare, and now I have severe kidney involvement and heart problems from the lupus.

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    what is Cytoxan Ablation? what I meant was Cytoxan i.e. cyclophosmide(spelling). I had it done few times.

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    A cytoxan ablation is the same drug as what you are referring to, but administered once in a very very high dosage. It is, like I said, a really drastic treatment. It makes most people sterile (sometimes permanently).

    It more or less wipes out your entire immune system, and then your cells regenerate. It is only done by one doctor, but for people that have no response to traditional treatments for lupus it has worked.

    Here is an article about it: http://www.wegenersgranulomatosis.ne...0ABLATION.html

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    Quote Originally Posted by brandichi View Post
    Has anyone been prescribed CellCept for SLE, with no kidney involvement? My rheumy has only prescribed Plaquenil, and it's helped a lot, but I've reached a plateau and I believe I can be doing much better with a different medication. She suggested methotrexate, but I'm very reluctant to go on that because I need to be able to keep working full time, and I'm afraid with mtx I won't be able to. So I've been looking into CellCept, and it seems like something to consider, although the risk of lymphoma scares me. And isn't there a new generation form of CellCept that is easier to take? I think I read about it somewhere, but can't remember the name of it now. Any thoughts before I see the rheumy in a couple weeks? I want to go there with as much information as possible.








    my doctor wants me to try methotrexate or cellcept but i had a bleeding ulcer once and i do not know if i can handle it and the side affects worry my. Bonita

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    Ssingh, that's really encouraging! My symptoms are extreme fatigue, joint and muscle pain, dryness (from Sjogren's), weakness, and all the other typical symptoms associated with auto-immune stuff (butterfly rash that NEVER goes away, brain fog, inability to handle cold, really bad GERD, etc). I have read that CellCept affects the stomach, and I've had ulcers before, so I'm really unsure about this. So far I don't have any permanent organ damage. They suspected it had gone after my heart in December when I was hospitalized for what felt like a heart attack. They thought it was pericarditis, but it turned out to be just the GERD. Whenever I get into a major flare, my liver is affected and often my lungs, and I go back on the nebulizer for a while, but with prednisone all eventually goes back to normal. So far, anyway.

    Is Cytoxan one of the chemo drugs? The rheumy told me in December it was time to consider one of them, but I refused. She also said there are less options for me than most people because I also have asthma, even though it is well controlled, and many medications used for SLE can trigger asthma attacks. Arghhh!!!

    Loverly, the Cytoxan Ablation does sound very drastic, but if it can bring you into remission, it sounds like it will be worth it. How long are you going to give the Rituxan to see if it works?
    Last edited by brandichi; 03-21-2009 at 06:38 PM. Reason: forgot something - oops!

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    I think we will probably give Rituxan around 6 months. From what I've been told most people see results pretty quick, but I don't want to jump into the ablation without trying everything else.

    Brandichi, I've heard asthma complicates everything, and it really sounds like it! And you are right, for most people, CellCept really does effect your stomach.

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