Bad reaction with Imuran
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mine too, i was sick for two years after
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The reaction started the next day. Thats how fast!
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Mine too!
– Hide quoted text — Show quoted text – The reaction started the next day. Thats how fast!
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Imuran is a cytostatic drug, wich in fact means chemotherapy! The use of imuran, i used it for two years at a doesage of 200 mg a day, is believed to alter more than is known. Now, they wanted me on a similar drug, Methotextrate, wich is injected in the muscular tissue once a week. The idea behind it is that only once a week a high dosage is better than every day. That alone implies in my humble opinion that "they" arent to happy with the side effects and risks concerning the long term use of imuran. As someone wrote in this forum, it didnt do good things for you, but im okay with the use of it, thats really personal…i agree on that one. I only hope we just dont eat everything the doc says, i did for 4 years, it didnt bring me any good. I just came out of a discussion with my doctor, he told me at the beginning to take the medication he wanted me to take. I did, got sicker and sicker and spent almost 4 montnhs in a hospital, high on pethidine, morfine and had my 3rd surgery. Imuran is not a healthy drug, if its needed its needed, BUT, as i found out and apperantly you did too, i felt sick as a dog from the moment i took it BUT i felt better than ever before since i stopped taking it.I told my GI that i dont see the benefits of these drugs, they make me sick. Ive had CD over 22 years now. I didnt take drugs against it for 18 years or so. sure i didnt feel good all the time, biut since i used imuran, pred, 5ASA and many more medications i didnt notice any improvement in my quality of life. Now im on Remicade every 8 weeks and feel ok with that for as long as it takes. I told my GI i wanted back my life as i had known it before, he told me imuran has a funny effect on our serotonine, due to its effect on the immunesystem. Serotonine is a hormone, made by our brain, that gives us the defence against every day life. If you lack it, youll feel depressed. I did for two years. Since i stopped imuran, i feel like i met an old friend, my old ME. ps. this story is my story, i only feel it as a source of information to hand to all of you, wich might guess that the problems you might encounter using this drug are so personal. This is just not true. Many doctors dont tell you these sideeffects exist.
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after 10 days. jeffy
– Hide quoted text — Show quoted text – How soon after begining the Imuran did you folks get the side effects? Jason yes, i had enough large muscle soreness for the whole world to share. mine was in ALL THE MUSCLES! and on Xmas day no less. drug only has a one day half-life, so i sweat it out laying in bed until it subsided. good luck to you. jeffy My hubby had a terrible reaction about two years ago when he tried Imuran. Two days later he ended up in the ER with awful leg pain, fever, and just terribly ill. We figured it must have been that, since it was a trial, and we quit it. Two years later, the DR tried it again. I reminded him of what happened before, and he said lets try again. I said, you wait, we’ll be back in the ER. Sure enough, two days later we were in the ER, same thing. The DR said that these problems weren’t a known side effect. Well, I hope they are now, because we didn’t make it up!! This started the downward spiral… no resolution yet. Had half the colon removed last week, still real sick. This disease totally sucks!
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How soon after begining the Imuran did you folks get the side effects? Jason – Hide quoted text — Show quoted text – yes, i had enough large muscle soreness for the whole world to share. mine was in ALL THE MUSCLES! and on Xmas day no less. drug only has a one day half-life, so i sweat it out laying in bed until it subsided. good luck to you. jeffy My hubby had a terrible reaction about two years ago when he tried Imuran. Two days later he ended up in the ER with awful leg pain, fever, and just terribly ill. We figured it must have been that, since it was a trial, and we quit it. Two years later, the DR tried it again. I reminded him of what happened before, and he said lets try again. I said, you wait, we’ll be back in the ER. Sure enough, two days later we were in the ER, same thing. The DR said that these problems weren’t a known side effect. Well, I hope they are now, because we didn’t make it up!! This started the downward spiral… no resolution yet. Had half the colon removed last week, still real sick. This disease totally sucks!
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What about using immune modulators to "maintain remission". That’s a long term thing, surely? One of my docs seems to believe that such medication is best used on the early signs of active disease. Any thoughts?
Well so far I’ve heard from two doctors that my only chance at staying out of the operating room for a second time is to use an immune modulator, specifically 6MP (doubtful I won’t have a reaction to it but I’m going to try it anyway) or Methotrexate (this one is even more serious but I still think I prefer it than surgery but I’m not 100% sure). The problem with surgery isn’t the surgery itself, my first one went off pretty well. I was out of the hospital in less than a week and the pain was intense but bearable with the meds. For me the real problem with surgery is that it’s a temporary fix. The disease will come back.
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ive been on imurran for bout 3 years an get cramps hip ..an calves to the point i scream its horrid ..i never thought was from that ..my tendons in my feet hurt swell also – Hide quoted text — Show quoted text – yes, i had enough large muscle soreness for the whole world to share. mine was in ALL THE MUSCLES! and on Xmas day no less. drug only has a one day half-life, so i sweat it out laying in bed until it subsided. good luck to you. jeffy My hubby had a terrible reaction about two years ago when he tried Imuran. Two days later he ended up in the ER with awful leg pain, fever, and just terribly ill. We figured it must have been that, since it was a trial, and we quit it. Two years later, the DR tried it again. I reminded him of what happened before, and he said lets try again. I said, you wait, we’ll be back in the ER. Sure enough, two days later we were in the ER, same thing. The DR said that these problems weren’t a known side effect. Well, I hope they are now, because we didn’t make it up!! This started the downward spiral… no resolution yet. Had half the colon removed last week, still real sick. This disease totally sucks!
Response:
My hubby had a terrible reaction about two years ago when he tried Imuran. Two days later he ended up in the ER with awful leg pain, fever, and just terribly ill. We figured it must have been that, since it was a trial, and we quit it. Two years later, the DR tried it again. I reminded him of what happened before, and he said lets try again. I said, you wait, we’ll be back in the ER. Sure enough, two days later we were in the ER, same thing. The DR said that these problems weren’t a known side effect. Well, I hope they are now, because we didn’t make it up!! This started the downward spiral… no resolution yet. Had half the colon removed last week, still real sick. This disease totally sucks!
Response:
yes, i had enough large muscle soreness for the whole world to share. mine was in ALL THE MUSCLES! and on Xmas day no less. drug only has a one day half-life, so i sweat it out laying in bed until it subsided. good luck to you. jeffy
– Hide quoted text — Show quoted text – My hubby had a terrible reaction about two years ago when he tried Imuran. Two days later he ended up in the ER with awful leg pain, fever, and just terribly ill. We figured it must have been that, since it was a trial, and we quit it. Two years later, the DR tried it again. I reminded him of what happened before, and he said lets try again. I said, you wait, we’ll be back in the ER. Sure enough, two days later we were in the ER, same thing. The DR said that these problems weren’t a known side effect. Well, I hope they are now, because we didn’t make it up!! This started the downward spiral… no resolution yet. Had half the colon removed last week, still real sick. This disease totally sucks!
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my doc is continuing my tacrolimus, 15mg/day, for maintenance. of couse he has me on other stuff too. jeffy
– Hide quoted text — Show quoted text – From a doctor: "The immune modulators have proven themselves to be safe and effective to maintain remission" Anyone like to comment on this given the contents of this thread, bot just the previous post? I had a terrible experience with Imuran, but I still think it’s a safe an effective medicine for IBD. It just requires really close monitoring. If I had called my doctor about the joint pains and fevers instead of thinking it was just the disease or a result of tapering prednisone, I probably would have been taken off it after only a couple days. Is this true of all the immunosuppressants – the need for close monitoring, I mean? I imagine that it is. And a good point too about checking up on warning signs. I probably ended up with a second resection because of a lack of intervention, partly my own fault (too embarrassed to keep bothering the docs on eveyr little thing… ! WAH! DUH!!!) and partly the result of those advising me believing that we were on top of the problem with Prednisolone. A CT scan MIGHT have identified the problem earlier when other options were available. From this point on I gather all the advice I can find, and take all the precautions against getting into the same situation. So I feel for you Michael, I’ve been there too! What about using immune modulators to "maintain remission". That’s a long term thing, surely? One of my docs seems to believe that such medication is best used on the early signs of active disease. Any thoughts? Jim — To reply by email, take out the "no.thanks." in my address.
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yeah….hmmmmmmmm… suspicions at least. there are many, many other options, why does your doc think you are limited to only these *two*? what about remicade infusion? what about tacrolimus? what about entocort? and there are others. jeffy
– Hide quoted text — Show quoted text – i had very similar results. i was in bed last xmas due to the joint pain. actually, it attacks your large muscle group. i inquired my g.i. about taking 6mp instead. she said for those that get minor reactions, like just neasea, it might work, but with rather large scale reactions like you and i, prolly not. she didn’t even want to try it she was that confident. so, i guess let me give you warning on that okay? be careful, you may end up with very similar reactions again….at least, according to my doc. To be honest I’m scared to try the 6MP after having such a bad reaction with Imuran, but at the same time I’m scared not to try it because that will only leave methotrexate which itself is even more scary because it requires liver biopsies with long term use. But one thing is for sure, I have to take one of the two or I will have a surgery for sure. I got my small bowel x-rays back and they don’t look good. Oh, and one thing that really impressed me with my new doctor is she wants me to come in to the hospital for the day that I try the 6MP, so they can monitor me. She said it’d be just for the day but I’m a little suspicious about that. But I am really happy that she is taking it so seriously.
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From a doctor: "The immune modulators have proven themselves to be safe and effective to maintain remission" Anyone like to comment on this given the contents of this thread, bot just the previous post? I had a terrible experience with Imuran, but I still think it’s a safe an effective medicine for IBD. It just requires really close monitoring. If I had called my doctor about the joint pains and fevers instead of thinking it was just the disease or a result of tapering prednisone, I probably would have been taken off it after only a couple days.
Is this true of all the immunosuppressants – the need for close monitoring, I mean? I imagine that it is. And a good point too about checking up on warning signs. I probably ended up with a second resection because of a lack of intervention, partly my own fault (too embarrassed to keep bothering the docs on eveyr little thing… ! WAH! DUH!!!) and partly the result of those advising me believing that we were on top of the problem with Prednisolone. A CT scan MIGHT have identified the problem earlier when other options were available. From this point on I gather all the advice I can find, and take all the precautions against getting into the same situation. So I feel for you Michael, I’ve been there too! What about using immune modulators to "maintain remission". That’s a long term thing, surely? One of my docs seems to believe that such medication is best used on the early signs of active disease. Any thoughts? Jim — To reply by email, take out the "no.thanks." in my address.
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i had very similar results. i was in bed last xmas due to the joint pain. actually, it attacks your large muscle group. i inquired my g.i. about taking 6mp instead. she said for those that get minor reactions, like just neasea, it might work, but with rather large scale reactions like you and i, prolly not. she didn’t even want to try it she was that confident. so, i guess let me give you warning on that okay? be careful, you may end up with very similar reactions again….at least, according to my doc.
To be honest I’m scared to try the 6MP after having such a bad reaction with Imuran, but at the same time I’m scared not to try it because that will only leave methotrexate which itself is even more scary because it requires liver biopsies with long term use. But one thing is for sure, I have to take one of the two or I will have a surgery for sure. I got my small bowel x-rays back and they don’t look good. Oh, and one thing that really impressed me with my new doctor is she wants me to come in to the hospital for the day that I try the 6MP, so they can monitor me. She said it’d be just for the day but I’m a little suspicious about that. But I am really happy that she is taking it so seriously.
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more and more. For two days I slept almost the entire day. Finally after 9 days my joint pains were so bad I had trouble getting out of bed.
3 1/2 days after stopping the Imuran the joint pain is much much better, almost gone in fact. Increasing prednisone to 60mg could have played a role in that as well. What a relief!
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more and more. For two days I slept almost the entire day. Finally after 9 days my joint pains were so bad I had trouble getting out of bed. 3 1/2 days after stopping the Imuran the joint pain is much much better, almost gone in fact. Increasing prednisone to 60mg could have played a role in that as well. What a relief!
From a doctor: "The immune modulators have proven themselves to be safe and effective to maintain remission" Anyone like to comment on this given the contents of this thread, bot just the previous post? Cheers, Jim — To reply by email, take out the "no.thanks." in my address.
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From a doctor: "The immune modulators have proven themselves to be safe and effective to maintain remission" Anyone like to comment on this given the contents of this thread, bot just the previous post?
I had a terrible experience with Imuran, but I still think it’s a safe an effective medicine for IBD. It just requires really close monitoring. If I had called my doctor about the joint pains and fevers instead of thinking it was just the disease or a result of tapering prednisone, I probably would have been taken off it after only a couple days.
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jim, she sounded more like a cold fish than a kettle of it…LOL. hey, you have a world renown derm on p.g. at northwestern!!! my doc consulted with him (called him in chicago) to get me help. unfortunately, i don’t know his name. i am going to see this derm in a couple of weeks, i am going to be playing guennie piggy with his first year med students on the 17th of dec. at u of m, ann arbor. you want me to ask him his name? jeffy
– Hide quoted text — Show quoted text – Currently in my first flare since my first resection 3 1/2 years ago, I have been doing a lot of research, particular 6MP and Imuran. Since I’ve been advocating their use, I thought I’d tell my recent Imuran experience which was actually a really bad experience! I took 6MP for a month and a half before my first surgery but it was too late to save my intestines and they had to come out, and my doctor stopped the 6MP. So when my new doctor gave me Imuran, I thought I’d tolorate it well. I started at 50mg. I started the first night with my dinner. The next morning I woke up with fever, horrible stomach pains (I would have went to the ER except I couldn’t walk), and chills. I felt terrible. I ended up puking and then feeling better. For the rest of the week, I was constantly feeling terrible in the morning with massive headaches, fever of 102, chills, fatigue, etc. Then in the late afternoon/evenings I would feel better. It was weird. I didn’t think it was the Imuran though. Towards the end of the weak I noticed my joint pain (mainly in the knees but also in the elbows and lower back) was getting worse and worse. And I was sleeping more and more. For two days I slept almost the entire day. Finally after 9 days my joint pains were so bad I had trouble getting out of bed. My wife reread the patient information and noticed the joint pain under the "call your doctor immediately" category. I had been tapering prednisone as well, which can trigger joint pain and I had thought it was the prednisone tapering the entire time. I found on the internet that when joint pain and fever occur at the same time it can be a result of a serious reaction to the Imuran. So I stopped it at once and saw my doctor the next day. She confirmed my theory. Then she increased my prednisone from 20mg to 60mg which really made me unhappy. She said she wants to try 6MP in 3 weeks, but this time she wants me to come in to the hospital so they can observe me for a day or two. I’m glad she’s taking this very seriously. She said it’s possible to have a reaction to Imuran but not 6MP, which is in agreement with things I’ve read online. Meanwhile I’ve been off Imuran for 2 1/2 days now and I still have joint pains but the fever stopped right away! So the lesson is these drugs are very effective and very powerful. But they can also be very dangerous for the small percentage of people who have a negative reaction. Be careful, and if you have side effects DO NOT try and rationalize it yourself. Call your doctor! Michael I’ve had worse reaction to Prednisone and Cellcept than Imuran as I’m on those for Pyoderma Gangrenosum. I have no outward symptoms of any of PG’s related diseases. Prednisone(60 mg) has given me terrible insomnia as did the CellceptI think. I’d get 3-5 hrs sleep in 3-5 days sometimes. I was on Fk-506 but that put me in worse pain than I ever imagined. That’s why I got on Pred/Cellcept. It healed me like a rocket, but they tapered it off before the PG healed and now, it doesn’t work, almost like I’m immune to the cure. So I went off the Pred/cellcept and then back on it some months later, but I was getting the insomnia so doc switched to Imuran(50 mg) and I noticed nothing. 3 weeks later he went up to 100 mg and now its at 150. But when I was at 60 mg pred AND the 150 of Imuran, I was a mess. Not sleeping, various stomach discomforts, some headache…and literally these seeming "attacks" of extreme fatigue which are supposed to be from the Imuran. I felt as weak as a kitten, no stamnia at all. I could fall asleep eating Jello since it was so much hard work! They’ve reduced the Pred down to 30 mg now and are weaning me off that an dImuran is still 150 so I guess the PRed has produced more of the side effects. The PG is stalled, though I’m 90% healed in from where I started, but still in significant pain occasionally and need the oxycontin mostly at night. But the Imuran isn’t bothering me. I guess I’ve gotten used to it, or it was the combo of Imuran/Pred that wa the problem and now that pred is lower, I feel lots better. Now, docs want me to do Remicade for the PG as they are getting some impressive results with PG, so they say. Here in Chicago, the dermo said there seems to be more PG than anywhere We asked him how many cases. He said," oh, a HUGE number…" "How much is that" we asked. He replied, "oh, about 12-24 cases." Now, in a urban area like Chicago with Rush having 12-24 cases of PG, its easy to sww why there is no research/cure. It’s off the radar screen and no one can get rich selling drugs or treatments to 24 people at a hospital. sad… and worst part is many docs just don’t care that the PG patients are in such horrible pain. The previous doc I had at Northwestern, I had asked about pain managment. She literally "gasped" and said, "…oh….um….narcotics, you’ll get ADDICTED!!!!!" So I asked her what to do. She replied, "take Advil". What a fine kettle of fish….and she wondered why I stopped seeing her. But that’s my Imuran thing… — Regards, Jim Polaski "The measure of a man is what he will do while expecting that he will get nothing in return!" Macintosh for productivity. Linux for servers. Palm/Visor for mobility.
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