For those on Cellcept...

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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/14/2007 7:25 PM (GMT -7)   
Anyone noticed swelling, water retention, edema, or just plain bloating as a side effect of Cellcept?

I've been on it about 7 months now and since this is one of the listed side effects I'm checking in to see if anyone else has this symptom associated w/Cellcept.

Of course, there are many other things that could be the culprit, up to and including my almost-3-month period. (Only a few more days till my PCP appt.)

Thanks,

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


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 6/15/2007 2:54 AM (GMT -7)   
i've been experiencing the swelling and just bloated feeling for a few weeks now, but i am not completely sure if its the cellcept. I am on 30 mg of prednisone and i dont know if that has anything to do with it. but to be honest, i dont think that those are side effects from cellcept cuz i dont remember ever reading about it in the info packets they give you at the drug store about the medicine you are about to take.
hope your doc can shed some light, i dont see my nephrologist again til july 2.
Hugs and prayers,
~Suzanne~
 
diagnosed in May '95 with lupus nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/15/2007 3:05 AM (GMT -7)   
Hi Lynnwood. I'm not taking it but I was wondering somthing. I noticed a lot of people are taking it. Is this for the Lupus? It's it the next normal step after plaquenil? I noticed you are taking both. I know I answered your question with a question but I am curious if this is somthing most lupies end up taking.

hugs
carol
God Bless
 Lupus.Possible CREST,COPD, High B/P, Oteoporosis
xanax,triam , vicodin.5x3, Evista,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.5.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/15/2007 9:16 AM (GMT -7)   
There seem to be a few people who are trying it in the last few months, but it's really not the usual use for Cellcept. I think I was one of the first trying it, and I've only been on it since October. For me, we tried it because the Imuran wasn't doing anything.

I think the 'normal next step after plaquenil' might depend on your symptoms and your doctor. The most often used progression I've noticed is Plaquenil -> Prednisone -> Imuran or Cellcept or MTX or ????

It'll be interesting to see what other people think about the 'normal progression' question.

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


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 6/15/2007 10:33 AM (GMT -7)   
I started Cellcept in Apr/May. I havn't noticed any swelling or bloating. I think Lynnwood describes it right. But my Rhumty prescribed me Prednisone, then Plaquenil, then Cellcept. I could not take Imuran.
It really depends on your symptoms and how often your flaring is in order for the doc to prescribe you a higher rank of drug (Cellcept/Imuran/MTX.....). The most common ones for Lupus are Prednisone and Plaquenil.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/15/2007 12:39 PM (GMT -7)   
Hi Lynnwood,

I haven't notice any more edema, swelling or boating since I started on CellCept. I have had some bloating rather recently, but only since I cut my CellCept dose from 2,000mg a day to 1,000mg.

My progression of AI meds as been plaquenil, prednisone, mtx which I discontinued after a few months because of side effects, and lastly CellCept.

Lynnwood, if you determine the cause of your swelling, edema, etc. please let me know. I've been taking a diuretic for 20 years.

Pat
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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/15/2007 12:55 PM (GMT -7)   
Apparently part of it was due to airline travel -- I have flown numerous times in the past without noticing anything, but this time I took at 10am flight Fri, a 7pm flight Sun, and was huge during the entire trip.

I'm still bigger than usual, but not like I was during the trip. Strange, I think....

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


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 6/17/2007 10:30 AM (GMT -7)   
for me the cellcept has two roles. i take it as an anti-rejection (kidney transplant) and i take it for the lupus. i'm still on prednisone, i also took imuran and plaquenil but now that i am on cellcept, that and the prednisone is what i am taking for the lupus. and actually my doc said that taking cellcept for autoimmune diseases is starting to become more common.
Hugs and prayers,
~Suzanne~
 
diagnosed in May '95 with lupus nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/19/2007 10:17 AM (GMT -7)   
My doctor wanted me to take Cellcept for the rheumatic arthritis, but had some difficulty getting it without insuance. Now that my kidneys are hit, I wonder if I should reintroduce the idea. It seemed good for me as the other medications suppress the immune system and I basically don't have much of an immune system left. Unfortunately, I already have edema (knees and up), so I guess I better find out what is going on with the kidney first. I find this medication interesting and promising. We will see. Please keep posting updates. Thanks - Kristin

Post Edited By Moderator (Lynnwood) : 6/19/2007 11:21:52 AM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/19/2007 11:08 AM (GMT -7)   
I need to better understand how CellCept works. I know it is given to people with kidney problems and/or transplants. In my case, however, my latest labs show that my creatin and bun are elevated so my rheumy has cut my dosage in half to determine whether or not the CellCept is causing kidney problems. Can anyone explain that to me?
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


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/19/2007 1:22 PM (GMT -7)   
Hi--
This is a little off topic but might help, I'm looking to get on cellcept for the IC problems I'm having. I take HCTZ, a simple thiazide diuretic for my swelling and it helps alot. I'm just wondering why the docs don't give it more to lupus patients since they know the pred is going to cause swelling. I don't have typical high blood pressure, just swollen ankles but my doc is really into preventing fluid retention and heart and lung problems. I know you can take it with steroids, because I get big shots (often twice the normal lupus dose because of my endo problems). I also don't get the swelling and bloating. Sometimes I think male docs overlook the problems women have with fluid retention and the long term problems they can cause -- congestive heart and lund disease, high blood pressure, etc. I don't know if this helps, but maybe they overlooked this piece of the puzzle.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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