Cellcept Questions

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Regular Member

Date Joined Jan 2006
Total Posts : 43
   Posted 7/2/2007 6:36 PM (GMT -6)   
I do not have lupus, but I am looking for information on Cellcept.  Like, how did you all decide to take it.  It has so many side effects and it's fairly new and etc. etc.  I have some auto immune disorders and a hemotologist has suggested I try cellcept. I now am on pred and have been on and off for a year and I think I need to try something new. 
So, any adivice or support from anyone on Cellcept would greatly be appreciated.
Thank you!

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 7/2/2007 7:23 PM (GMT -6)   
Karen, I don't think I'm the only one here who takes CellCept and I'm sure someone else will see your post and share their experiences with you. Let us know if it helps!

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 7/4/2007 11:30 PM (GMT -6)   
i started on cellcept in october...i guess i "decided" to take it because although it is very new and expensive (!!!) it is not a chemotherapy drug such as cytoxan or other meds that are used for lupus. from what rheumatologists have told me it is not quite as damaging to the body as the stronger medications. it has been working well for me although i think it has affected my liver function because my rheumy had to lower the dosage...i do not really think i experience any noticable side effects from it either...maybe hair loss but that could also be due to the lupus itself or also the prednisone.....lol. anyways, i think it is a good drug and i am glad i am on it

Regular Member

Date Joined May 2006
Total Posts : 101
   Posted 7/5/2007 9:36 PM (GMT -6)   
I have been taking cellcept for a while now with virtually no side effects. I was nauseated and had upset stomach at first; but once I got past that I have suffered no adverse effects. God Bless, Judi

New Member

Date Joined Apr 2007
Total Posts : 19
   Posted 7/5/2007 10:04 PM (GMT -6)   


I have been on Cellcept for about a year.  Initially it was prescribed at a relatively low dose for chronic pulmonary vasculitis, but my rheumy says it is a good drug to "layer" with Plaquenil for relief of my UCTD symptoms.

The only side effect I have is fatigue, though it is hard to know to what degree the fatigue is caused by Cellcept and what is just part of the autoimmune disease.  As a precaution against infection I take low-dose antibiotics thre times a week, and I have blood drawn every six months to make sure the Cellcept is not affecting my white blood cell count.  So far it has done a great job of keeping the lung inflammation under control.

I know not much is known about the effects of taking this long-term, but I would be quite ill without Cellcept so I try to focus on my health today instead of worrying about what may happen down the road.


UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP

Forum Moderator

Date Joined May 2005
Total Posts : 6937
   Posted 7/6/2007 7:09 AM (GMT -6)   
I have taken Cellcept since October. I don't think my fatigue itself has changed any, however, I was experiencing rather major cognitive dysfunction and Cellcept has been my miracle drug in that respect.

I started at 2000mg (2 500mg pills each morning and evening) for about 4 months, then we raised it to 3000mg (3 pills AM & PM) -- at this point I begin noticing my hair thinning and changing texture. Just two weeks ago we dropped down to 2000mg again -- hopefully this will allow hair to return to normal and yet keep my brain working!

I haven't noticed any other effects -- just increased brain function (yay!) and some hair thinning (a small price to pay for having my brain back).

Good luck,

PS. My rheumy does blood work every 6-8 weeks to check on any undue side effects -- nothing has shown up to date.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Click: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

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