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.
hello,
i have lupus SLE for 8 years now and i am on plaquenil and cellcept. my kidneys had shut down and i was put on dialysis. after 4 months with the help of prednisone and cellcept they started working again. after this happened i refused to take the prednisone because the side affects are horrible. i was actually labled insane and put on a 24 hour watch in the hospital because predinisone make me go crazy. no-sir never again! the cellcept actually seems to be working but my hair falls out and is very breakable now. i have major problems with my self esteem because all the damage that lupus has done physically and emotionally to me, so i am asking my doctor in the coming 2 weeks to please take me off the cellcept because it is heart breaking to see my hair on my pillow and on the shower floor everyday. but we each react differently to the medications. i have heard people say that prednisone works wonders on them and that cellcept does not make them lose their hair which is the exact opposite of what i experience. i guess every medication is really a wait and see thing. anyway, i wish you and your wife the best of luck in fighting this.
mona
I have lupus and it keeps me guessing.. what is the right medication combination? Cellcept concerns me cause my reactions to it, but simponi does not last too long and is helped with plaquenil. I will follow this blog for answers.
Thanks for sight!
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I have Scleroderma which is a disease much like Lupus. I have been diagnosed for 10 years and I also have pulmonary hypertension. I was placed on Plaquenil since the beginning and was placed on cellcept about four months ago. Two months into tking Cellcept I caught a MEGA infection in my lungs that sent me 9 days to ICU. I was medication induced in a comma-like state. They intubated me 5 times. But thanks to Go, the many, many people who prayed for me and very good doctors I ws able to
make it thorough. I came out with 24 hours of oxygen and learning how to walk again.
(Five weeks in the hospital will do that). I told my pulmonologist that I refuse to be given Cellcept again because I blame it for my catching this horrible bug. Anyone with
pulmonary fibrosis on Cellcept?
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THE EMOTIONAL & PHYSICAL DAMAGE OF LUPUS IS SO HEART WRENCHING. I WAS RECENTLY PLACED ON CELLCEPT BECAUSE BOTH MY OPTIC NERVES FLARED UP & I LOST EYE SIGHT IN ONE EYE. IT HAS BEEN 3 WEEKS NOW. I DON’T KNOW IF MY FEET SWELLED DOWN & I LOST 10 LBS BECAUSE OF THE MEDICATION OR BECAUSE OF A “FLARE UP” GOING DOWN. I DO SEEM TO BE LOSING A WHOLE LOT OF HAIR THOUGH. I PERSONALLY BELIEVE I SHOULD BE ON METHALTREXY (SOUND OUT) BUT WE’LL SEE. I LIVE IN MICHIGAN, GO TO THE UNIVERITY OF MICHIGAN & KELLOGG EYE CENTER FOR MY DISEASE. I HAVE ABOUT 16 DOCTORS. I’VE HAD A NEEDLE IN MY EYE, EYE SURGERY, MRI, 2 CAT SCANS, LUNG BIOPSY, OVER 80 VILES OF BLOOD TAKEN, ETC & ALL THE TESTS ARE SHOWING ARE SERIOUS INFLAMMATION. I HAVE A REPEAR MRI, A MRA & SPINAL TAP NEXT WEEK. I’VE BEEN ON THE STEROIDS, WHICH WORKED FOR SO LONG BUT CAUSED REALLY BAD ACNE & WEIGHT GAIN, SO I ABSOLUTELY HATE THEM. I AM SO FRUSTRATED. I WAS GIVEN CELLCEPT IN HOPE MY EYES WOULD STOP REJECTING THEMSELVES. I HAD SLIGHT NAUSEA & VOMITING BUT EVERYTHING’S OK NOW. MY HAIR IS FALLING OUT AT A CRAZY RATE BUT IF THIS MEDICATION IS GOING TO WORK THEN IT IS WORTH IT. LUPUS HAS CAUSED ME TO GAIN OVER 70LBS IN 1 YEAR. I HATE MYSELF SOMETIMES. PLEASE GOD LET SOMETHING WORK.
I have had sle for 25 years. I got CNS three years ago. I have just recently been put on cellcept. I am also on plaquinel, predisone, sulfasalazine, gabapentin. I have IVIG treatments once a week, to help with the cns. I had lost feeling from my waist down. The IVIG has been a lifesaver. It helps to have others with your condition to share with. For the most part we look healthy, and no one can tell how sick you are and how poorly you feel.
I have no side effects from cellcept. I have noticed a great difference in my cns after starting cellcept. I had been on imuran prior to that and my liver enzymes went crazy. I had also been on methotrexate and tolerated it well but it was not helping my cns. Lupus can be a frustrating disease, you must be patient and work with your rheumy to find the best combination of meds.
Im starting cellcept 3/23/11 and Im terrified. Today is my last dose of cytoxan. Wish me luck please. And, God bless!
Hi Everyone–Just wanted to thank those who posted your positive experiences and words of encouragement. To those who are quite sick, I hope there are happier days in your future.
I was diagnosed with SLE 20 years ago and after the first few years, we were able to get it under control with plaquenil, occasional stints of prednisone and me paying close attention to my body signals and getting enough sleep. I’ve had several flares over the years but never had to go on anything else until now. I’ve been struggling with pleurisy for 6 months and just started on Cellcept. So far I don’t have any terrible side effects except for nausea but it does concern me to be on such strong meds. I work with kids 1:1 so there’s no staying away from germs but I’ll keep my fingers crossed. I don’t let Lupus run my life but I try to be careful. Now with a new symptom that effects my lungs, it makes me more concerned but I will not let me stop me from enjoying my life as much as I can.
Thanks again for sharing your stories. It’s nice to know I’m not alone and to learn from others’ experiences.
Take care,
L
Judith,
How is it going?
-L
I’ve been taking Cellcept for about 6 years now and, honestly, it’s worked the best out of any of the immuno-suppressants I’ve tried and I’ve had very, very few side effects. My problem now, though, is that it’s not working as well as it did previously.
I take 3,000 mgs. per day plus 400 mgs. of Plaquenil so I believe I’m at or very near the maximum dosage of Cellcept. For the past year, I’ve had more flares breaking through. The Lupus seems to be going after my shoulders and hips with a vengeance. I’ve had three shoulder surgeries in the past 18 months to repair torn tendons and to remove deformities. It’s all caused by the inflammation.
Complicating matters is that I also have Crohn’s Disease. My doctor tried me on Remicade previously which was absolutely wonderful in helping the Crohn’s issues but it really set off the Lupus, particularly in my kidneys. I’m basically in auto-immune hell, grrrrr.
The only immuno-suppressant I haven’t tried is Imuran. I’m wondering if adding Imuran to the mix, perhaps with a lowered dose of Cellcept, might help? I need relief badly. If Lupus isn’t raging, Crohn’s is and my quality of life right now isn’t very good.
For those leery of Cellcept, a word of reassurance. It has been magic for me and I’ve taken high doses for a long time. Just make sure you do take it on an empty stomach so it can work properly. I’m sad that it seems to have lost its efficacy for me but I’m grateful it’s helped so much for this long. As for the cost, thankfully it’s been available as a generic drug for a couple of years now so the cost is about half of what it used to be.
I was diagnosed in July 2010 with SLE, after my lungs shut down and I ended up in the ER and the hospital for a week, before they figured out the cause. I have been on methotrexate, predisone, plaqneil and now Imuran…. The doctor’s can’t figure out why nothing will cure my aches and severe pluersey I get. Now since I have been on the Imuran I feel sick to the stomach, severe headaches and I am in even worse pain then before I started. I hate Lupus, I just want to sit and cry for hours, but I have 2 children I have to take care of and I sometimes don’t know how I get thru the day…
Thank you for all of your input. I have had Lupus for about 11 years now. I was in remission for about 8 years and a few years ago, I got really sick and have been in this terrible flare up! I was given massive doses of prednisone and gained 60lbs. I was given Methotrexate which caused me to have very heavy menstrual cycles and grow polyps. I ended up have a uterine ablation. They changed my medication to Imuran and I was on it for about 7 months. At first it worked good, but I started to feel weird in my stomach. For months my stomach would growl even while I was eating. I was told I had acid reflex. Then after suffering from this for several months, I started to get really bad pains in my stomach. I ended up in the ER 4 times and all 4 times, they told me I had acid reflex. After so much pain and now throwing up and not able to hold anything down, they did more tests. Turned out I ended up getting pancreatitis from the Imuran and was in the hospital for a month. The only treatment for pancreatitis is resting the digestive system, so needless to say, I did not eat for several months. Had to have a PICC line and I was sent home on home IV. I ended up with 2 more episodes after I was released the 1st time and ended back in the hospital for 2 more weeks for each episode. I thought I was never going to be able to eat again. Good thing I guess out of all of this, I lost my prednisone weight! I refused to take anymore medication after all the bad side effects. I always got the “rare but serious side effects”, from all the medications. If the disease wasnt going to kill me, the medications were! I have been off of all drugs for several months now and I am in a lot of pain!! I am back on taking morphine 3 times a day and my doctor had said with me having the pancreatitis, it is now hard to give me medications in fear of relapsing. He had mentioned Cellcept and wanted me to think about taking it. I was very adamant about not taking any more drugs and trying to go the natural way, but that isnt working and I am seriously thinking about Cellcept. Thank you again for all your inputs and I wish everyone good healthy days to come! God bless!
I’ve had lupus for 13yrs. I have been taking prednizone form day one. I have tried them all plaquenil ,Didronel, cytoxan, Imuran just to name a few. Today I was prescribed cellcept ,I have rash all over my chest and they itch like crazy. I was given a topical cream protopic to relieve the itching . The rheumatologist says it might stop the rashes from developing. I sure hope it works.
Been on prednisone since 1989 plus all the other meds associated with SLE on an intermittent basis. Just switched from Imuran, which caused no problems, and I injected 0.6 mg of methotrexate for the last 3 years. Am now on Cellsept which I’ve had no adverse effect with hoping to undo some liver damage and lung problems. Am also working with a nutritionist to see if diet will help the inflammation and pain. It seems to alleviate some of the Colitis problems and brain fog which had been frightenly acccelerating. The only thing that really caused severe side effects was methtrexate.