Cellcept and side effects

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Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 5/7/2010 7:47 AM (GMT -6)   
Hi everybody.  Well, I went for a kidney biopsy last week and we found that I am no longer a class II nephritis, but a class III.  They are now going to treat me.  My rhuemy's plan is for me to go on Cellcept for 1 year then Azothiaprine for 1 year.  Is anyone currently on Cellcept, and what kind of side effects are you experiencing with this medication?  I'm not really okay with doing treatment, but know that I don't have a choice.  Any advice is welcome.
thank you!
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 5/7/2010 8:24 AM (GMT -6)   
Tammy, I took Cellcept a couple of yeas ago and loved it. My mind cleared up and I had more energy and less pain. I had to get off of it, however, when it started causing negative changes in my lab work. You'll be monitored carefully while you're on it. Go for it and enjoy the benefits.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 5/7/2010 8:34 AM (GMT -6)   
Hey Tammy! Sorry to hear about your kidneys getting worse! I was on cellcept for about 8 months and I was an odd ball. Had pretty much every side effect possible, and from what I understand, most people don't have very many side effects and it usually works great on the kidneys!! After my kidneys failed again, we finally switched medicine.

The biggest complaint I hear is reacurrent sinus infections! Other than that, most people that I talk to, LOVE it! Good luck and let us know how it treats you :)!

Forum Moderator

Date Joined May 2005
Total Posts : 6941
   Posted 5/7/2010 10:57 AM (GMT -6)   
I was on Cellcept for about 18 months and it gave me back my brain!!! The only side effect I suffered was some thinning of my hair, but my brain and other positive result were well worth some hair.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined May 2007
Total Posts : 474
   Posted 5/7/2010 3:57 PM (GMT -6)   
CellCept has been my miracle drug. No side effects so far. They check my blood every three months - I have been taking it for about 9 months so far. Good Luck!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

New Member

Date Joined Jan 2010
Total Posts : 14
   Posted 5/7/2010 6:44 PM (GMT -6)   
Im sorry to hear about your kidneys. I myself have class II and class III. Its been rough. Cellcept i have been on for about 3 years. Unlike the others above it hasn't done much for me at all. they keep raising it hoping it will help but it seems to just get worse. They put me on prograf. The treatment usually works well for others and it is a great medicine.

Regular Member

Date Joined Dec 2006
Total Posts : 185
   Posted 5/7/2010 10:32 PM (GMT -6)   
i have been on cellcept for about 6 monts,,the only real side effect i got was nausea but they gave me zofran for the I am (active) Class III and (inactive)CLass V lupus nephritis my kidney reports are coming back great i only have a trace of protien in my urine and things seem to be going really well... my white blood cells havent fallen too much i think 3 is as low as it has gotten and i had a month long sinus infection and just had surgery on my sinuses to clean them out and make some repairs to damage that lupus caused.. it gave me a septal perforation....

let us know how it goes..
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Anxiety./panic disorder, GERD, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. PRES ,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: cellcept, Plaquenil,Prednisone 10,Miracle mouthwash,bactrim, actonel, caltrate, Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg, pantaprozole and carafate

Forum Moderator

Date Joined Jun 2006
Total Posts : 1533
   Posted 5/8/2010 6:36 AM (GMT -6)   
((Tammy)) I'm sorry to hear of your kidney diagnosis. I've been on Cellcept 1 1/2 years. I started it because not only did I have horrible fatigue, I had bad neuro issues- I was in constant lupus fog,  I couldn't drive (rode the bus), developed a terrible stutter, and fell frequently.  Anyway, like Lynnwood, AmyTX and Fran, Cellcept gave me my life back.
Cellcept is a drug used for transplant patients cause it supresses the immune system. That being said, you need to avoid anyone with a communicable disease (I had swine flue in Jan). That's also when my constant sinus infection started. I had sinus surgery a few weeks ago which went great. BTW, I also lost lots of hair, but it all grew back while still on Cellcept.
Even with these side effects, the docs can only have my Cellcept when they pry it from my cold, dead, fingers. I hope you give it a try without reservations. It may work wonders for you! Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 

Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 5/8/2010 7:34 AM (GMT -6)   
Thanks for everyone responses. I do feel better about starting it. I was going to start it today, but the pharmacy didn't have it? So, they will have it on Monday and I will pick it up after work. For now my rhuemy has me on 40 mg pred for the next 2 weeks, then 30 mg pred for 2 weeks after. I have to see him in a month and hopefully we can taper that pred down at that time. Pred drives me nuts in such large quantities so I know this will be a rough patch for me. It will be nice to have some of this swelling and pain go away though.

I really hope cellcept works for me. Like I said I feel better about starting it just knowing people who have or are currently using it.

Thank you!
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis

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