Cell Cept

2046 Views 5 Replies 5 Participants Last post by aae3748, Oct 24, 2017

lazylegs

Discussion Starter · Feb 9, 2009

I have been using Cell Cept for approximately 3 years. Cell Cept was initially prescribed to help neurological symptoms that were not responding to other treatments. The hope was that it could also be a Prednisone sparing drug. I was not able to lower the Prednisone.

My doctor started me on a low dose of 500 mgs. It took about 4 weeks to notice any change. At that point since I was able to tolerate it the dosage was increased. Presently I am on 3000 mgs. The only side effects I suffered were dizziness and some abdominal discomfort. The dizziness passed once my body adjusted to the drug.

Cell Cept has been effective for me. It was proven when I had to discontinue it for a short period of time. All my symptoms returned.

Cell Cept is expensive. The first prescription for 30 days without insurance would have been $1500. The last time I asked it had dropped to $600.

:flower2:
Lazylegs

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Jolinda Stephens

· #2 · Mar 18, 2017

Are you still on CellCept? I'm taking a non-brand version and it's not that expensive with insurance. Is your dosage still so high? Based on reading about it, I was hopeful that it could actually send me into remission.

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lazylegs

Discussion Starter · #3 · Mar 20, 2017

Hi Jolinda,

Now I am on the generic form, Mycophenolate. I am still on 3000 mgs. It is my maintenance drug as I can no longer take Plaquenil.

Take care,
Lazylegs

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susane

· #4 · Aug 23, 2017

Has anyone done better or at least no worse after stopping plaquenil.

susane

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wolf1

· #5 · Aug 23, 2017

I was on Cellcept for 3 years but had to come off it. It affected my bone marrow. I've been off them about 9 months now and my body is starting to notice.
My specialist wants me to have the TNF but it frightens me coz I can't take most meds for lupus.
Hope Cellcept works for u.
Take care
Wolf1

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aae3748

· #6 · Oct 24, 2017 (Edited)

I'm currently on 2000 mgs of mycophenalate(CellCept generic) to try to get my lupus under control. I've been on plaquenil for a year and a half but has had persistent low grade fevers that did not respond to Prednisone. There's another woman in my support group who was put on Cellcept for the same reason and was on 3000 mgs for about two and a half years. I'm hoping I won't be on it for any longer than she was because my husband and I would like to try for a baby in a year or two. The only side effect I had was stomach cramping the first two days but I always take mine on a full stomach now just in case. It took almost a month but my fevers went away and haven't returned.

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