Imuran symptoms and conditions

I have UC, and was diagnosed in April after a Colonscopy. I was put on Prednisone and was never able to get past 20mg without getting very sick again.I changed everything I DID, my diet, everything. they finally put me on Imuran. But the prednisone is making me loose my hair, they started before imuran. Also give me horrible pain, in the bone and muscle. I take all my vitamins, and it helps a little but it still hurts. they run regular blood test. Some days I feel like I can;t walk. Make sure to cut your salt out. It also made my face horribly round and fat. and i got a fat hum p on my back. The acne sucks, and it messed with my period too!

Male 28. Was diagnosed a couple of months ago with Ulcerative Colitis and was prescribed Prednisone. A large dose to start with then tampered off for 4 weeks. The first week I felt great, better than great, fantastic. The only downside was difficulty sleeping. The following 3 weeks, without any exaggeration have been among the worst I have ever experienced. I think the lack of sleep finally caught up with me, so I was constantly tired and generically felt depressed, also knee ache, eye pain, inability to think clearly (quite a problem when you are an Engineer), lacked energy or strength – and the Acne. Never before have I had Acne like this, and I used to suffer quite bad during my teens. Its just so aggressive, every few hours there seems to be new ones appearing. It seems to occur when ever I step down the dose. I think having this bad skin has really added to my depression over the last few weeks, it has been especially difficult considering I have been in the process of starting a new job. To top all of that my UC seems to be worst than ever! I’m worried that when I go back to see the Doctor next week he is going to put me on some equally-annoying medication or maybe another course of Prednisone if I’m lucky.

Does anyone know of some natural alternatives that are good for UC, very reluctant to put anymore man-made chemicals into my body.

I have been on prednisone since I was two years old (I am now sixteen) because I have Autoimmune Hepatitis IIa. I would like to point out that there is still a life worth living being on prednisone, maybe I say this because I do not know life without it, but at least we're alive! Last year I had a flare up of the AIH and had to 6x my dose of prednisone. It sent me into a spiraling depression of constant sleep, crying, hopelessness etc....but I made it through. Just PLEASE keep hope that things would get better, because I know what it's like being on the dreaded drug better than most.

Shortness of breath has continued to worsen as its built up in my system. Chest pain and back pain on my left side seem to be worsening as well. I started Imuran as opposed to using Prednisone which is much harsher on your internal organs, but I am hard pressed to think anything could be worse then what I feel now. I have not lost my appetite, but the fatigue is unbearable even after I've eaten.

I have been put through the wringer with Crohn's. 15 surgeries, all of my terminal ileum removed, 1/3 of my large bowel removed, etc., etc,- Those with sever Crohn's know.

I spent years on high doses of Prednisone, Imuran, Sulfasizine and other drugs and nothing worked.

I was even retired from the US Air Force due to its severity.

Remicade has help tremendously. However, some of the side effects listed above, I have also been through. Some of them, have been explained through other factors and those attributed to the Remicade I take other meds to offset them.

For example, Head aches. I figured the head aches were from allergies that I have had for some time. I attributed some of the headaches to the Remicade. The head aches are very sever after my infusions and decrease to a dull roar after that. I take four aspirin and Sudifed PE and this leaves me with a dull roar shortly after the infusions and does away with them till the next infusion - perhaps this will help some of you.

The muscle soreness is horrible and I take aspirin or Tylenol, but that barely takes the edge off.

I started get those little red dots. Then the dots turn to blisters. I get these on my hands, feet and scalp. My GI Doctor said it wasn't the Remicade, but a Dermatologist showed me a recent article that should Remicade could cause Psoriasis. I take Clobetasol Propionate for these and it has cleared them up.

I took the Remicade years ago and then it was stopped - it was the way it was done then - not constant, just three doses spread out over three months.

I got the tingling fingers during those. A neurologist attributed it to the Steroids I had been on. The nerve damage is permanent.

A few years later, they started the infusions again and I experienced no muscle soreness, headaches, etc. and it did not help the Crohn's as it had before. When I talked to my GI doctor he showed me a study that people build anti-bodies to the Remicade over time. They doubled the dose and it started working again. For those who are experiencing the Remicade not working - perhaps this is what has happened to you.

I get the mood swings, but had never considered it might be the Remicade. I will talk to my doctor about this one.

I have the blood pressure decrease during my infusions, but it has not been sever.

More recently, my joints have begun to ache and initially the Remicade had helped to stop the minor joint pains I already had. Come to find out, I have had bone thinning due to the Crohn's.

The one symptom I have started getting this week is random, sever pain in odd locations - not joints.. They have been deep and feel like they are in the bone. One midway up on my shine, one midway down on my foreman and one in my right thumb. Has anyone experienced this. The pain has been horrible and it does scare me.

I also suffer from depression, but have had it for years prior to the Remicade treatments.

I have been diagnosed with Ulceritive Colitis as well. I am about to be put on 30mg of prednisone and am terrified of these effects. I've gathered a lot of useful information from this forum and am thankful for that. Imuran, azothioprine, and remecade seem to be the most successful drugs as alternatives to prednisone. I'll ask my doctor about all three and hopefully I can avoid the prednisone. I'll be sure to post my results soon.

Been on Prednisone for 3 years now for ulcerative colitis. At first tolerated the drug quite well. But after a few months started to gain weight, acne. After 3 years of yo-yoing between large and low doses, each increase in dose made me feel worse. I am now at a state of osteopenia and of extreme tiredness and brain fog. I see 80yo with more energy than I. I cant walk up 10 sets of stairs without feeling tired out. I need to sleep 3-5 hours a day just in order to function. As mentioned before brain fog is amazingly bad. I'm a scientific researcher which can no longer work.

Prednisone has introduced to me what panic attacks are, mood swings, joint pain and swelling, extreme muscle fatigue and wasting, blurry vision, in habitual eating habits, depression.

This drug has ruined my life. I would have preferred having surgery to remove the colon and going to the toilet 10 times a day rather than not living as brain fog and tiredness that makes my life a dream-state nightmare.

I started taking 60mg of Prednisone two months ago and one week ago it was lowered to 40mg a day. I have gained 10lbs in that time, have the moon face, acne on face and chest. My face has grown black fur on it. My mood swings are terrible. I feel like a time bomb waiting to go off. I feel like I am always angry. My anxiety level feels like I am about to jump out of my skin. My doctor has agreed to start tapering me off of the Prednisone as now I am also on Imuran, Cytoxan and Methotrexate. Does anyone know how long does it take for these side effects to go away after you are off the Prednisone??? Do any of them lessen with a lower dose???

Remicade did wonders for me, my Crohn's disease went into remission. Still have muscle pain over a year after not taking it. Maybe that is from the Imuran. When I had my infusions I had to have Prednisone before & during because of an allergic reaction.

Remicade did wonders for me, my Crohns went into remission. Still have muscle pain over a year after not taking it. Maybe that is from the Imuran. When I had my infusions I had to have Prednisone before & during because of an allergic reaction.

PLEASE REPLY! ok i wrote on this board about a month ago, and i was complaining about all the horrible side effects i was having.....however things have gotten much much worse since then, and i must admit that i have been bad. very bad. i am secretly winging myself off of the steroids b/c I cannot handle the depression and not being myself anymore... I've been on Prednisone for a year now and started winging myself from 15mg when I last wrote on here to now 10 mg... my hair is falling out in HUGE clumps, and I am NOT overexaggerating when I say I am going bald... does anyone know if this could be from tapering the drug, or would you say it is probably because of my condition possibly returning from tapering the drug too low???? I just want to know if IMMENSE hair loss is affiliated with steroids...I have not seen anyone else mention anything.

I am 65, suufering from ulcerate colitis. Imuran kills my lever, I had to take a strong dose of prednisone.up to 60 mg. now after ten days I am on 30 mg.
it helps for colitis but I am not sleeping. I took sleeping pills, I can sleep about 2-3 hours in 24h.
Who could help me to be able to sleep again ? What kaind of sleeping pills or tranquilisers are recommended ?
Thank for answering also directly to my Email ******

Thank you.

I am a 19-year-old female pre-med student who has been taking this nasty drug for exacly 1 year now.... The amount I am on continues to change, for my disease keeps returning and leaving remission. I finally get down to 10mg from 40mg, and have to go back up when symptoms return!!! This is SO discouraging. The worst part is, no one understands the physical and emotional agony this drug brings on. I'm 19 and feel like I'm 90. My body aches, my weight is constantly fluctuating, I bruise from simply being poked (being a clumsy person, I look like I am beat!!), my bones feel as if they are about to break, and I am SEVERELY despressed. Being in college and taking rigorous classes, this is just too much for me to handle anymore... My 5-year relationship with the love of my life/best friend is falling apart because of my horrible mood swings.. don't blame him for leaving. I feel as if this drug has ruined my life more than the disease itself...Does ANYONE know if one's body and mind returns to "normal" after FINALLY being off this drug??? I pray to God the answer is yes... I would appreciate someone's reply and/or insight, because my Dr. fails to tell me about ANY side effects until I mention something. PLEASE REPLY!!!

Is there any evidence that Imuran causes hearing loss? I am 50 and taking 150mg of Imuran and am suddenly not hearing very well. Barbara

I have been diagnosed with Autoimmune Hapatitis and put on a low dosage of Prednizone. 20mg a day for 2 weeks, 15mg a day for 2 weeks and then 10mg a day for an unspecified asmount of time. I have been on the drug for 2 weeks and have just begun to feel side affects mentioned by others. Primarily night sweats accompanied by uncontrolable shaking, pain in lower joints and pain at the base of the neck. Has anyone else with Autoimmune Hepatitis been put on prednizone and what side affects have been experienced. I am alos on Azathioprine (generic ofr Imuran). Apparently even low doses of prednizonee can produce the symptome others have described.

I have been taking this drug for 1 year and 6 months. At the most it was 240/day in hospital. I was released at 60mg plus 100 mg of Imuran for autoimmune disease antisynthase syndrome anti jo 1. What a nightmare. I had just about what everyone else is talking about. Now I am off this drug and hav ereduced the Imuran to 25 mg. My symptoms are no longer present. Man, I am soooo tired. I can go a little then have to rest. How long before my energy comes back. i have been off (after reducing 1 mg a month when I hit 10) now one month. Thanks
Peg

I have crohn's disease. The first time I took prednisone was 4 years ago when I was first diagnosed. I started with a 40 mg dose and then gradually decreased it for 2 months. The only side effects I had then were a round face and acne which went away when I stopped the medicine.
Recently I had a serious flare, and the doctor put me on prednisone again. I will take 40 mg for 2 weeks and then decrease it by 5 mg weekly. This time I'm having very terrible heartburn and stomach ache. I also have a bad taste in my mouth and am always dazed and cannot concentarte. I started taking also Imuran , which my doctor says will help me and allow me to stop the prednisone in 2 months. I hate this medicine!

21 pills a day consisting of mestinon, imuran, prednison, ranitidine, over the past 5 years i am only on 25 mg of immuran... i missed my pills for 3 days now i have double vision, now i dont knw what to do. I have Myasthenia Gravis and before I was a vegtable.

Melissa

Been on Prednisone about 6 weeks. I've had muscle fatigue, especially when its hot out (walking through a parking lot on a 100 degree day takes a little longer than I'd like). One thing I haven't seen mentioned here is that I have lost lean body mass. I had been having my body fat tested by a personal trainer (pinch calipers) before and after I started (30 mg/day for lung restriction (62%)/inflamation/collagen vascular disease/immune mediated lung disease/likely Mixed Connective Tissue Disease/autoimmune disorder). After 1 month on prednisone, despite the fact that I have continued to work out (cardio and resistance), I lost 3 lbs of Lean Body Mass. 3 weeks later I had lost another 3 LBM, and gained 1 lb fat mass. I'm glad to have kept my overall weight down, and my circumference measurements haven't gone up, but there is definately a redistribution of fat.

Other side effects moon face, acne, depression, energy swings (up/down). Heart burn, went from 8 hours sleep to 5 1/2 - 6 average, and facial hair growth. The overwhelming hunger (not just being hungary, but eating a full meal and not feeling satiated at all) has subsided for the most part. The drug is not fun. My doctor is now having me start imuran with the hope of lowering/eliminating the prednisone, but imuran has its own side effects.

The hardest part is that the doctors don't know what will work, its guess and check...When the side effects overshaddow the initial symptoms, is it worth it?

taking prednisone for ulcerative colitis. . .can't seem to get below 60 mg. a day but my doctor is going to try tapering me off again while the Imuran he put me on hopefully takes effect. can't stand this freaking drug! my face is bloated and huge (moon face) and it makes me look at least 30 pounds heavier than the 15 pounds i have already put on in the last couple months! i'm hungry all the damn time . . .and so i gain more weight and i'm major mood swing girl so i'm super sensitive about my appearence. i know the prednisone is the only thing keeping my disease at bay (and me out of the hospital) but the side effects are horrid!