cellcept, what is it? An option for me?

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Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/25/2007 10:48 PM (GMT -6)   
Hope everyone is ok. I'm having trouble now with trigonitis not responding to antibiotics and with no infection present, which I suspect is interstitial cystitis--which is like a bad UTI all the time, and it is probably due AI disease.  I noticed that cellcept is being investigated as a tx.  I'm on plaquenil and synthroid, which has brought my thyroid antibodies down some, but I still seem to be flaring all the time.  Steriods seem to aggravate the IC and make me more prone to UTIs, and I don't want to become immune to all the antibiotics they shove at me.  What class of drug is cellcept, is it really strong?  do they use it only when you are really really sick?  This IC pain, coupled with my constant neck pain and gi issues is just the cherry on top. 

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/26/2007 8:52 AM (GMT -6)   
Marji, I've heard good things about Cellcept from the people here who use it. With all the health issues you have, you'd have to talk to your docs and make sure it would be an okay treatment for you to use. It sounds like you're having trouble finding meds that will help but that won't aggrevate other health problem you have. I really hope you can find something to use that will work well for you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/26/2007 11:22 AM (GMT -6)   
Marji, I started taking CellCept a few months ago in otder to help me taper off prednisone, and it has worked wonders for me. I have had no side effects from it. It is a very strong drug and suppresses the immune system so I avoid anyone with the least symptoms of a cold or illness.

Whether or not it's the drug for you and the problems you are having is something you should discuss with your rheumy. I sure hope you can find something that helps you.

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

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 5/26/2007 12:16 PM (GMT -6)   
I am on Cellcept also for a few months, because I am on a continuous flaring. I cannot taper off the pred (10 mg) yet because the lupus is still active. I do not notice a dramatic difference yet, but I have no sign effect. Yes. It is a strong drug that suppresses the immune system. It works kind of slow. You also need to have blood count every month. I also need to avoid anyone who has cold or anykind of illness. I am very easy to get infection.
I think you should discuss w/yr rhumty and see the possibility of taking cellcept. The rhumty is the best person who knows your condition and decide if this is an option for you.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 5/26/2007 2:41 PM (GMT -6)   
Cellcept was initially developed as an anti-rejection drug, I believe particularly for kidney transplants. Only in the last year or so has it begun to be cross-used to treat lupus.

It, like Imuran, is supposed to allow us to drop our prednisone dosage, as it doesn't do as much harm to the bones and the adrenal glands as prednisone does. It, like prednisone, requires constant organ monitoring.

I've been taking Cellcept since October. I had rather serious cognitive dysfunction -- not only could I not work, but I would get lost and confused in the middle of a sentence, while driving, even while reading or watching TV. Cellcept has given me back my brain!!!! I'm still less than pre-lupus with brain function, but much, much, much better than I was.

I have not had any side effects, and we are just now experimenting to see if I'll be able to decrease my prednisone intake.

Good luck,

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
OTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus

Allergies: All Sulfa-based medications; Levofloxacin,  Levaquin

DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/26/2007 11:19 PM (GMT -6)   
Thanks so much for all the help. with so many people taking it and tolerating it with few or no side effects, I feel better about asking for it. One of the hallmarks of my ai disease is brain problems, forgetfulness, people tell me things and have to tell me like ten times, I forget a lot. and some disorientation, I don't go too many places. I guess this thing called interferon alpha induced autoimmune disease is characterized in part by anti-parietal antibodies--I'm assuming brain. I've looked a little and saw that cellcept works on tnf and I don't know if it will have an anti-interferon property to it, but the new research on anti-interferon as lupus treatment is really interesting and one group is doing it, MedImmune. I think this treatment will ultimately be very helpful for people with AI diseases once they have the kinks ironed out. Maybe cellcept can help for a while. All the tylenol in the pain meds and the aspirin in the urinary tract meds, and aspirin/tylenol like stuff in soma I take, is all really starting to make my liver hurt. I'm going to call my rheumie and see what he says, I need to get this under control because I just can't handle this bladder pain anymore, it's excruciating. I'm really suffering with it.

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/26/2007 11:36 PM (GMT -6)   
Hi Marji:

I'm sorry to hear that you're having so much pain. I just wanted to pass on well wishes to your and hope that your doctor can give you a good treatment plan.

I've taken cellcept on two different occasions. They were fairly far spaced out before stopping and then restarting the meds. I like the others took it in hopes of being able to lower my prednisone doses. Of course, it's like I've been a chronic flare now for several years. I don't think the cellcept did anything for me, but as you know, with my MDS it's possible that the diseases are feeding off one another.

Just wanted to wish you well. Take care and let us know what happens.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Regular Member

Date Joined Sep 2005
Total Posts : 250
   Posted 5/31/2007 1:08 AM (GMT -6)   
I had a major allergic reaction to Cellcept. It started out with really bad heartburn-like symptoms. I was in the ER within 48 hours of starting it and I nearly had a stroke. Needless to say, they pulled me off. (I guess my reaction is rare.)

Take care,
Diagnosed with lupus in May 2005
Daily Medications:
Prednisone, 5 mg
Imuran, 50mg 2x a day
Warfarin, 5 mg / day
Hiprex, 1 mg 2x a day
Zoloft, 100 mg / day
Plaquanil, 200 mg 2x a day
Nexium, 20 mg / day
Naproxen, 220 mg 2x a day
Tramadol, 50 mg 2x a day (as needed)
1000mg calcium
2000 IU of Vitamin D
400mg magnesium
800 mg cranberry
Liquid sunshine

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