Cellcept reactions?

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FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/7/2009 6:37 PM (GMT -7)   
Hello to everyone. I hope that you are all having good days.

Saw my rheumy last week and he would like me to reconsider trying Cellcept. Now, he had suggested this about 3 months ago, but it was going to cost me (with insurance) over $250.00 a month. I politely declined. Well, I tried to be polite. LOL
I'm still having quite a bit of trouble and rheumy says Cellcept is now available as a generic, so he REALLY thinks I should try it. I agreed to see how much of the generic my insurance would cover and then make a decision. Insurance is taking their own sweet time getting back to me.

But I am worried, I had tried Imuran last fall and had a delayed but very severe reaction to it. I can never even try Imuran, again. Rheumy says they are different drugs, and there is no way to know if I will be able to handle the Cellcept without trying it, but I am very scared. Has anyone ever had a reaction to Imuran but then been ok with Cellcept? I totally trust my doc, but I know that everyone here has actually "lived' with this mess and will understand my fears.

Thank you!
Take care,
Fran

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


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 7/7/2009 6:49 PM (GMT -7)   
I had very different reactions to them...

...on Imuran for about 18 months with no changes in my health - nothing good, nothing bad, nothing at all

...on Cellcept for about 18 months and my very serious cognitive disorder was stopped in its tracks and I feel like my brain was give back to me on a silver platter. No bad effects overall, but some hair thinning. I'd trade my hair for my brain any day!

So, I had very different reactions. I can certainly understand being scared about trying the Cellcept...I didn't want to try either of these either!

But, as with about everything w/Lupus, everyone is different. And none of us have the exact same symptoms you have, and each reacts differently to the meds. If your symptoms warrant it, trying it under closely watched conditions seems reasonable to me. I definitely wouldn't do it right before my dr was going on vacation or anything like that!!!

I hope someone comes along who's experiance is a closer match to yours -- with a delayed/serious Imuran reaction who then did okay w/Cellcept.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/7/2009 7:07 PM (GMT -7)   
I have also had success with cellcept recently. My hair also thins on it and when I first start it I have some nausea, nothing major. When I first tried it several years ago. I would have cost me $500 monthly, but my doctor contacted the drug company that makes it and they provided it for free until I got medicaid. Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/8/2009 1:26 AM (GMT -7)   
Hey Fran, I am a current CellCept taker and since the generic came out  (mycophenolate mofetil) and I pay 10.00 for all generic meds. I know cellcept has been a lot of people's miracle drug but not so much for me. Been on it since Jan (was taken of Imuran) and my joint pain has gotten worse, so much so that every morning all my joints are about 2-3 times swollen. It either that or high doses of pred has helped my kidneys stabalize for the most part.(I am thinking pred cause everytime my prednisone comes down, i start spilling more protien and blood) caused acne, hairloss, slightly lower blood counts! But I am an oddball when it comes to meds, so I would def give it a shot! Hope your insurance works with you!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/8/2009 7:21 AM (GMT -7)   
Fran,

I too had a severe reaction to Imuran. It started an hour after I took it and I had such severe vomiting and diarrhea that lasted for about 10 hours and left me unable to get off the floor that I thought my hubby would have to take me to the hospital.

So my rheumy put me on CellCept, and like Lynnwood, the difference in how I felt was miraculous. I got my energy back, my dementia-like mind came back to normal, and my joint pain improved. I was truly a wonder drug for me.

It's imperative that you have regular blood work done when you're on CellCelpt, and unfortunately after about 6 or 8 months on the drug it started doing damage to my kidneys so my doc took me off of it. That doesn't happen to everyone, as Lynnwood can attest . I too would trade my hair for it, but not my kidneys.

I hope you find that the generic is much more affordable, and if you try it, let us know.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/8/2009 7:46 AM (GMT -7)   
Thank you so much for answering! Sounds like maybe, the generic Cellcept might help. Hair loss is fine, but I will make sure to follow through with the bloodwork for kidney function, etc. Still haven't heard back from the insurance company - but I am thinking I will try the drug.
Thank you! I knew I could count on everyone here, you guys are great!
Take care,
Fran

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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/8/2009 10:42 AM (GMT -7)   
I am considered end stage renal disease and was originally placed on cellcept for lupus nephritis. I didn't realize that it could affect the kidneys adversely. Of course, we all process meds and react so differently. Judy

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 7/8/2009 1:08 PM (GMT -7)   
I cannot tolerate Imuran, not even a bit. However, Cellcept works well on me and I have no reaction to it. My lupus is under control and the bloodwork looks pretty good. I was scared too when I was suggested to take Cellcept for my lupus because of the severe reaction from Imuran. Yeap. The Rhumty told me is a different kind of drugs, so I decided to give it a try. And it works well on me.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; pregablin 75 mg


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/8/2009 6:02 PM (GMT -7)   
Thank you all!

Omega - that made me feel so much better. Not the part that you reacted to Imuran, but that you were successful with the CellCept after the bad reaction to Imuran. Insurance approved the generic today ($10.00 copay), so I guess I will give it a go tomorrow. Thank you all for your help. I am so grateful to have this group!
Take care,
Fran

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/9/2009 6:12 AM (GMT -7)   
I'm jealous!
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/12/2009 8:52 AM (GMT -7)   
Hello everyone!
Just a quick update. Started the generic CellCept yesterday. So far, so good! Eventually I am supposed to take 2 pills twice a day. But Doc had me start with one pill yesterday, two today, and then three tomorrow, then regular dosage by Tuesday. Couldn't sleep last night (I know it's dumb, but I was afraid I'd sleep through a reaction).
Thank you, again for all your support!
Take care,
Fran

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


vanae
Regular Member


Date Joined Apr 2006
Total Posts : 46
   Posted 7/12/2009 9:22 AM (GMT -7)   
Hi Fran. I just started cellcept after having to take a break from being on 6mp. My liver enzymes were elevated quite a bit from that. Anyway I got approved for it through the patient assistance program as I dont have insurance. I am just finishing my second week of taking it & other then some heartburn at the beginning I havent noticed any side effects except I feel extremely sun sensitive even more than usual. I only took 1 pill a day for the first week & now am on 1 pill 2 times a day right now. I go for lab work tomorrow and if ok I increase 1 pill a week for the next 2 weeks and will be taking the same dosage as you. I have already felt well enough to decrease my prednisone from 10 mg to 7.5mg. I havent been that low in a couple of years. I hope this goes well for you too! smilewinkgrin
Rhonda

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/13/2009 5:53 PM (GMT -7)   
Thank you!
Today has been unbelievable. So much of my overall swelling has disappeared. I pray that this keeps up and I can tolerate the CellCept long term. Thank you, again, everyone!
Take care,
Fran

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


mary ester
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/20/2009 8:00 AM (GMT -7)   
confused  hi this is my first time doing this so I dont know if Im doing it right or not... my question is this I have been disnosed with mctd for a little over a year and my dr has not found a medication that will help releave some pain.   I have pain constantly in both my hands  to the tips of my fingers .. My toes always are hurting, and I have shoulder and neck pain.   I feel weak all the time  as if I am about to catch a cold or something.  Im acky and sore all the time.  Im constantly have rashes that swell up on my face, arms , back,  and now I have sores on my leg that appears to be healed or scab over but are painful and sore to touch, I have the butterfly rash on face and Im haveing hair loss isssues... My dr wants me to chem- therpy ... Is this normal for anyone with mctd? 
 

jennmem
New Member


Date Joined Sep 2014
Total Posts : 5
   Posted 7/8/2015 6:19 PM (GMT -7)   
Hi! I too just experienced a severe reaction to Imuran. Rheumy said it was a rare hypersensitivity reaction to aziathropine (active ingredient in it). I was only on it for a few days when I suddenly began experiencing severe nausea, hypotension (my bp dropped from about 140/90 to 93/48), a-fibrillation that lasted constantly for about an hour or so and then randomly off and on after that, dizziness, weakness, achiness (more so than my usual), mouth sores, and swelling......all occurred about 3 hours after taking each of my two doses per day and would last for hours. Then I would take my next dose right around the time the symptoms were wearing off and it would start all over again. I felt like I was dying! I was taken off of it after 7 days of taking it and told never to touch it again. I read that only about 0.01% of people taking this drug have this particular reaction confused Anyway, I was extremely upset because I so deeply hoped that Imuran would be the magic answer I have been so desperately searching for. My rheumy assured me that we can try something else. I see him next week to discuss. I would like to talk to him about the possibility of CellCept. I am wondering if anyone else has experienced the particular hypersensitivity reaction I had on Imuran and was then successful with CellCept. Also, is CellCept available in an injectable form? I have such GI trouble with any meds, so the idea of bypassing the GI system by injectable would be something I would like to explore.

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/8/2015 7:11 PM (GMT -7)   
Hello jennmem. I started this thread about 6 years ago. My reaction to Imuran was very similar to yours. I will never try it again. I have been on CellCept since then and the improvement in my overall health has been amazing. I have attempted twice (under doctor supervision) to discontinue the CellCept and both times I worsened very quickly. So I guess the CellCept might end up being a lifelong med for me. I have my bloodwork checked every 3 months and so far, so good.
I wish you much luck and hope that you have great results!
Take care, Fran

jennmem
New Member


Date Joined Sep 2014
Total Posts : 5
   Posted 7/9/2015 2:54 AM (GMT -7)   
Fran,

Thank you so much for responding! I didn't notice quite how old the thread was.....lol! I really appreciate the information. It is so encouraging that you were able to switch to CellCept and have been doing so well with it for so many years. I was worried that I would react the same way to all of them since I reacted so severely to the Imuran. I am so happy for you that things have improved, and thank you again for your response! I will post on here once I have started the CellCept and share my experience with it in case other people could use the info.

Many Blessings!
JennMem

PamPatty
New Member


Date Joined Jul 2015
Total Posts : 1
   Posted 7/12/2015 7:10 PM (GMT -7)   
While I don't have Lupus, I have vasculitis and it is treated the same.
I tried to take only 1/2 a dose of Imuran to get off the 60 mg of prednisone I'd been on and woke up during the middle of the night and couldn't stop vomiting. Since my vasculitis attacks the small blood vessels, after about the 5th time i was sick the vessels involved starting rupturing causing me to have to go to the ER and have a 5 day vaca there.
So when my Rheumie wanted me to start CellCept I was so frightened to take that first dose.
I finally did and haven't had any problems so far but have only been on 250mg. I am suppose to increase to 500 mg tomorrow as I'm down to 30 mg on the prednisone.
I certainly understand your concern. Good luck!

yehyeh
New Member


Date Joined Jan 2016
Total Posts : 8
   Posted 1/28/2016 6:42 AM (GMT -7)   
well, cellcept work well for me for my lupus nephritis.

well, i dun have anymore urine protein thanks to cellcept. and my kidney can slow progress since 2008 to 2016. from creatinine 140-200. and still no urine protein. all thanks to cellcept.

however, i take 2g per day. quite high dose.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/29/2016 6:30 PM (GMT -7)   
I am locking this thread because it is quite old and the original posters are no longer active. If you are have Cellcept questions or comments, please feel free to start a new thread.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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