Goodbye Cellcept
The rheumatologist suggested that my wife move off of Cellcept, which she had been taking for some time now, and move to a similar type of medication called Azathioprine, or Imuran by brand. Azatioprine is pronounced (aze-uh-THIGH-oh-preen) by the way. I have no idea why it matters to me, but I do like knowing the correct way to pronounce these things.
Like Cellcept, Imuran is an immunosuppressant medication, commonly used for people who have had kidney transplants, but it has a secondary use as a medication for rheumatoid arthritis. I’m not sure if its use in lupus is related to its use for arthritis, or just the fact that it’s an immunosuppressant. I suspect it’s a bit of both.
Like with any change in medication, I think it’s a good idea for both you and your spouse to keep an eye out for any changes that may indicate serious side-effects or reactions.
So, does anyone have experience with Imuran?
Sadly, at this time I can’t even afford to see my rheumatologist, get blood work done, much less pay for medications. This lupus is a curse. It takes from me more than Im willing to give, cost more than I can afford, and pays back more than I could ever want. I’m tired and sick and tired and sick and so on and so on………………….
I’m not on Imuran, however, I am currently taking Cellcept. I was wondering what reason your wife’s Rheumatologist gave for taking her off of it. I was temporarily prescribed Cellcept after seeing a doctor while I was on vacation several years ago. My Rheumatologist at the time wasn’t too happy when she found out and took me off right away. The doctor I’m seeing now put me back on it, and I’ve been on it quite a while now. What really scares me is that I’m taking two other medications that are immunosuppressant.
@MaReVeilleVie: The doctors felt that the Cellcept had contributed to her developing Thrombocytopenia, where your platelet count becomes dangerously low. They were also concerned that it was irritating her stomach.
My rheumatologist tried to put me on Imuran but I broke out in hives the first time I took it so he decided to take me off of it. He also tried to put me on Cyclosporine (another immunosupressant) but I started getting severe muscle weakness from it. I’m now on Methotrexate and have been on this for about 4 weeks. So far so good. I was told that it may take 6-12 weeks before it actually starts working. I was also told that some people have been using this medication for 20 some years and do well on it. Without knowing how this medication will work for me, the only other medication I did okay on was Plaquenil. I plan on asking my rheumy if it’s possible to go back on it once I’m in remission. (I was diagnosed with Lupus in 2007 so like your wife, I’m fairly new to this too, but have been doing research through the internet and talking to others that have Lupus.)
I hope Imuran can work for your wife. I think it is really great that you started this website.
I’m on it, but not for arthritis. I’ve been on Prednisone more this year than other years, so it was time to try something different. I haven’t been on it that long, but it’s working enough to get my Prednisone a little down without me feeling horrible. No side effects as of yet… but I think they say it’s more serious side effects that can happen, but it’s not very likely. Prednisone on the other hand has side effects that will probably happen, but at least most are reversible. I’m not sure about Imuran.
I like Imuran for now.
My wife is on Imuran, Predisone and Methotrexate,to name a few. She has been diagonosed since 2005. The medicine’s are extremley expensive and all of them seem to have side effects, but they are helping cut down on my wife’s flares.
I am convinced that CellCept is not working for me. I would like to back on cyclosporine because it worked really well for me last time I had a flare-up. And I too like reading your posts. They remind me that my family and I aren’t alone in this. If you don’t mind, maybe you can share with us how your wife is doing on Imuran. I pray it is more effective than Cellcept. Take care
My wife is 45, and has been on Predisone, continuously since she was 18. She was on Imuran, Methotrexate, CellCept, the list goes on and on and on… She did pretty well with Plaquenil & Predisone for a long time. But lupus has totally destroyed her life today. After lupus attacked her central nervous system, (12 years ago) she was disabled overnight, eventually she was in hospice here at home, in a coma, she pulled through that, all the best Dr.s and medicine in Chicago couldn’t change the damage that was done. She is beautiful, and no one could imagine the hell she lives in. She is on massive doses of pain medication for her brain she uses morphine when that doesn’t work. It is really bad, but, please keep in mind she has a very deadly form of neuropsychiatric lupus, plus has had lupus for 25 years, and it flared up 15 years ago and has not gone into remission since, labs back that up. This is why I ended up here, as much as I know about the disease I am almost at my wits end with her troubling behavior, due to the brain damage, causes a lot of confusion, she has no short term memory. She is unable to control when she gets up or goes to sleep. Ugh!!! It’s rough! Well, thanks for listening…Gary PS To make matters worse we lost both of our children our daughter at birth (this caused the disabling flare when our son was 2) and he was 8 years old when he passed from ALD.
@Gary: That is just awful. I am so sorry. My wife has short term memory problems, but it’s very manageable. My thoughts go out to both of you.
Thanks Jeff, as someone said above, lupus is a curse. It totally has destroyed our lives. My wife walks on fire, both feet have dislocated bones in them because the connective tissue has been attacked for so long it no longer IS connective, add to that the long term steroids, they have only made the situation worse. When she woke up last night she had been asleep for 34 hours, after the first 30, I begin to do resperation checks every 30 minutes.
But, it helps to make these little comments here thanks again Jeff.
Hi Jeff,
I started on Imuran last fall and had an unusually bad reaction to it. I experienced severe nausea, fever and muscle pain. It wasn’t too bad at first, but I guess it built up in my system and I ended up in the ER. So sadly I can’t take this medication. I hope your wife has better luck with it.
I was on Imuran for less than a month last summer. The doctor who prescribed it had hopes for it working for me (Plaquenil hadn’t much effect), yet some of my other doctors seemed worried I was on it.I was told it could take 3-6 months to have any effect an was aware there can be some nausea.
The first couple of weeks were not too bad. However one day, at week three, I developed severe nausea and vomiting about an hour after ingesting the pill. It lasted about 4 hours and left me in bed the rest of the day. It was quite bad. I went off and back on just to be sure it was the medication and not something coincidental. As soon as I started back on it I experienced the same reaction so I had to stop taking it. I take a low dose of prednisone and I’ve been put on Cellcept but haven’t started yet.
Once I lost my medical coverage for the Cytoxin to help keep my kidneys working (lupus nephritis), I was put on immuran for about five years with continued improvement in flare mgmt. I began to slip in my labs showing increased lupus activity and did start noticing little lesions, which the docs didn’t know what caused them. I know now that they were lupus lesions, even though they didn’t look like the usual forms. Tell your wife to continue with the uva/uvb sunscreen, specialty clothing, laundry additives for increased spf and minimize the sun as immuran can intensify sensitivity.
Since cellcept has been approved for kidney transplantation, my med team felt it would be a good one for me to try. I have been taking it for about four years now and my kidneys are at 100% function. Immuran costs less, thankfully for many, but wasn’t effective enough for me. I also take Accupril to manage my BP, even though it’s low, which really helps the kidneys.
Really, it’s all a crap shoot and, like everything else, we have to remain flexible, informed and creative. Wishing you both the best and hope the immuran goes well.
My daughter is on Cellcept for the last 9 months. She was taking prednisolone also for a year. Her blood results are pretty well. Still her rashes in her face is not disappearing totally. Is cellcept not working for her and should some other medicine? Please advise
My daughter is on Cellcept for the last 9 months. She was taking prednisolone also for a year. Her blood results are pretty well. Still her rashes in her face is not disappearing totally. Is cellcept not working for her and should some other medicine? Please advise
Hi Jeff
The opposite to your case, my wife was on Inmuran for about 7 months. At the beginning she had nausea and felt bad, but then she got better. The medication was doing good on her, but lately some side effects were very bad: sever headaches and anxiety.
Last Saturday her Doctor changed her medication to Cellcept. She just took their first pill last night.
Question foy you: Did Cellcept caused headaches in your wife? what side effects it caused to her?
Regards, Sergio (from Mexico)
I think I have tried them all. Hydroxychloroquine, Chloroquine, Qunicrine, Solu-Medrol, Cellcept, Prednisone, and now I have just begun Methotrexate (fingers crossed it works
)
So about the Imuran….I started taking this medication in a very low dose while awaiting blood resulst to come back. The blood results I was waiting for is a test for a specific liver enzyme. This liver enzyme is needed to metabolize Imuran. Unfortunately, not everyone has that liver enzyme….and I of course, do not have it. So I can’t tell you about any bad side effects, but I didn’t have any in the limited time that I was on the medication.
I know you said the plaquenil and steroid works well, but that works well for a lot of people. The goal is to get off and stay off of the steroid as the long-term effects are horrible. I’ve also learned my own triggers, the sun is mine. Some people are able to tolerate it better, but if I am in the sun for 5 minutes . without covering up with sunscreen and longsleeves and a hat….I end up with the rash. I hope she feels better soon.
I dont have lupas but I have a rare lung disease called D.I.P desqumative interstitial pnumonitis and I also have been on prendisone for over a year now (it has done a number on my body) I guess as long as I can breath thats all that matters though. I am taking Inmuran and it makes me very sick also about an hr after I take it so I take zolfran at the sam time. The zolfran makes you sleepy so I take it @ night before I go to bed. There was a few doctors that wanted to put me on cellcept I asked the lung specialest about it and he said he has not herd much good about it working. I the side effects are really bad. I want to get off the prendisone also bu I dont no if cellcepy is the way to go. So far the inmuran is working good.
I am a 59 year-old man with SLE lupus. I’ve had it since 1994. I have had ALL the classic problems of lupus and have taken just about everything for it. I’m currently on Cellcept and plaquenil.
My biggest lupus problem now is chronic pleurisy.
A couple years ago I was also diagnosed with Inclusion Body Myositis (IBM). IBM sucks the muscle from you.
Today I heard about the new lupus drug Benlysta. Look it up. It’s supposed to be on the market next year.
Hello everyone, I refused to take Cellcept… I was diagnosed with Lupus in 2003..Have not had a flare up since then. However, it took me about 1 and half to get better. I, too have tried predisone and god knows what else when I was hospitalized in 2003. Well i have a new lupus dr. and he just prescribed Cellcept. I refused to take it because my white cell count is already low and I get a shot from my Hematologist to help boost my white cell count…it didn’t make any sense to me. Take a medicine that reduces my white cell count and take a shot to build it up. We as patients have to make tough decisions and RESEARCH, RESEARCH all medicines/side effects and in some instances have the courage to say NO, lets try something else!!!!GOD SPEED…
I just started cellcept. I have had lupus for atleast 10 years and I want to get off of the presnodone. I was wonder if my body will begin to do what it is supposed to do if I get off of the medication? Have any one heard of the Human Fetal Stem Cells to help with Lupus patients? Medra’s Medical director William C. Radar
I have been on the max dosage of Cellcept for well over a year, diagnosed in 2005. My husband and I desperately want children and the Cellcept has helped get my kidneys under control. Does anyone have experience in changing from Cellcept to Imuran in order to have a child? Would love some first hand perspectives…
I have been on Imuran for about 6 months for SLE Lupus and have had pretty good results. Before starting the Imuran I was on Plaquenil and predisone but had no luck. When I started the Imuran I did experience nausea, vomiting, and headaches. These side effects will get better but it took me about 3 months and still experience some of them.
***Lupiejenn…my dr put me on Imuran instead of Cellcept so I can have children. I have read many blogs about people switching from Cellcept to Imuran and they all seemed to have good results. I wish you good luck!
@Jeff feb09 @MaReVeilleVie How is the platelet count now? What did you do? Worked? Don’t DO? My doctors have increased my Cellcept. I have made it up to 80 but was a slow as 7. One doctor told me not to super careful don’t hit your head, sneeze or floss my teeth. Walking acoss an icy parkinglot is a whole new sport. Any ideas would be appreciated.
Great post! I will definitely be reading more of your site more often! This is a great article on arthritis!
I’m sorry to hear that this disease has destroyed alot of peoples lives.I have stage 6 lupis were the doctors told ME I would never work and my husband would have to take care of me.I would like to say I’m on alot a meds including cellcept and I had protein through out my body.I had high blood pressure and the list go on I to thought I was having HEART ATTACK,BECAUSE ALL THE PREnisone i WAS ON .bUT WHEN THEY TOLD ME I WAS going to be disabled,I said hell no I found a job working as a chef and never stopped yet I work 9 hOURS a day and life is good.iT’S MINE OVER MATTER,BECAUSE THE MINUTE THE DOCTORS TELL YOU ALL THIS NEGATIVE STUFF YOUR MIND RACES AND THE MIND DESROYS.aND YOUR HEARING IT FROM A WOMEN WHO ACUALLY DIED IN THE EMERGENCY ROOM AND WHEN i CAME BACK i WAS IN A COMA!for two weeks this has been my battle but I keep working out I body build and run on my treadmill for an hour!!!I just keep living!!And last but not least I put my lord jesus firstI PRAY FOR STRENGH IT WORKS,TRY IT.GOD BLESS ALL OF YOU!!
I AM 19 YEARS OLD. I WAS DIAGNOSED WITH LUPUS WHEN I WAS 16. I STARTED OFF TAKING PREDNISONE AND 2 OTHER MEDICATIONS. ALTHOUGH I ACTUALLY DID REALLY WELL ON THE PREDNISONE MY DOCTOR DIDNT WANT ME ON IT VERY LONG. AFTER A WHILE MY DOCTOR TOOK ME OFF OF THE PREDNISONE AND PUT ME ON IMMURAN AND PLAQUENIL. I WAS ON THESE 2 MEDS FOR ABOUT A YEAR AND A HALF. THE RESULTS FROM MY BLOOD WORK WERE NOT UP TO STANDARDS SO MY DOCTOR TOOK ME OFF THE IMMURAN AND PUT ME ON CELLCEPT AND PLAQUENIL. I HAVE BEEN TAKING THESE 2 MEDICATIONS A LIL OVER A YEAR NOW AND THEY WORK GREAT FOR ME. WHEN I WAS FIRST DIAGNOSED WITH LUPUS I COULD BARELY WALK, MY BONES ACHED, AND I WAS ALWAYS FREEZING WITH CONSTANT HEADACHES AND FEVERS. I AM CURRENTLY TAKING 200MG OF PLAQUENIL AND 500MG OF CELLCEPT. OTHER VOMITING ONE TIME, I HAVEN’T HAD ANY SIDE EFFECTS. I AM LIVING A HEALTHY LIFE AND I ALWAYS PRAY TO GOD THAT I WILL GET BETTER AND LET HIM KNOW THAT I KNO HE CHOSE ME TO HAVE LUPUS BECAUSE HE KNOWS THAT IM STRONG ENOUGH TO FIGHT IT.
Hello my brothers and sisters! Thank you for this amazing website. I have had SLE for almost 5 years…drug an oxygen tank around for about 2 years…prednisone was a staple med at high doses and I developed Cushings from the steroids as well as adrenal insufficiency. I was on methotrexate, imuran , one I cant recall and then the doc put me on Cellcept to be taken along with the prednisone of course. I am sooo happy to encourage you that I was able to be pulmonary rehabbed,no more oxygen pump, no longer have to take Cellcept , (altho my docs said don’t throw it away) and against all odds, I have been weaned off of prednisone! My rheumy said I would never make it down lower than 7 mg but with the help of an endocrinologist and God’s will, I am off of it! It would take 6 months just to work off 1 mg. of the stuff. I am only on Plaquenil at this time…I would take CellCept in a heartbeat…I did have nausea and some vomiting and diarrhea but I am still standing and fighting this disease. My lungs have some fibrosis and I am limited to some extent, I still haqve the damage Lupus did to my vestibular area so I have labrynthitis but I am writing to you all! Keep the faith and keep your “dukes” up. AND may God bless the husbands and wives of my fellow lupus friends as my fiance left me to go on vacation to Germany while I was still in ICU! Kudos to you!
I have read the above comments, and feel sheepish in adding my 2 cents worth, I was diagnosed about 18 mo ago, and they have me on quinine. My most annoying symptom is hair loss, I don’t want to take anything else, as the side effects are worse than my complains. I also have skin rash, but not really anything to complain about, yet.My blood work isn’t the best , but I try to eat healthy, and hopefully that helps, I dunno. I am positive I got this Lupus when I took Zyrtec, but no one agrees with me, but that was the only thing I took.
Hi
i’ll start this by saying that I’m from England and so the cost of the drugs is not an issue for me. I’ve been on various immunosuppressents since being diagnosed with Lupus and was on Azathiaprine for years, but then about four years ago was put on Cellcept. My Lupus was so much better with the Cellcept, that my GP was prepared to keep me on it despite the cost (to the surgery). I’m now trying to get pregnant so have been back on the Azathiaprine for a couple of months and although I have had the test that shows that I shouldn’t react too badly too it, in the past my white cell count and platelets were low. My Rheumatologist is keeping an eye on these now.
Anyway, I hope your wife is doing okay on the Azathiaprine now.