New to Imuran - Side Effects Question

[novax67]

After Pentasa wasn't doing it for me Dr. started me on Imuran about one month ago. I was one week at 50 mg and increased to 100 mg. They said my blood work looked good after first two weeks. I had some minor fatigue and digestive issues and some joint pain but it was manageable and went away for the most part.

Until about 5 days after my blood test I came down with high fevers. Starting in the afternoon with chills, fevers over 101 and night sweats. Called Dr. and nurse said it was most likely a virus and wait it out or see my GP if it lingers. Well, 11 days after it started I still have fevers, night sweats, very painful and muscle pain in different parts of my body. Fevers are a bit lower but still very uncomfortable. Fatigue is often debilitating.

GP gave me antibiotics "just in case" but nothing changed with that either after 3 doses of the 5 day prescription.

Then, two days ago I got a new symptom. Severe throat pain/tightness and it would go all the way down to my chest. Hit me about 3 hours after taking Imuran and lasted for 3-4 hours. It goes away gradually and in the morning I seem OK. As with all these symptoms they seem to be gone or greatly reduced about 20 to 24 hours after taking medication but always return.

I don't think my GI believes this is an allergic reaction because my blood test was normal and I am not so bad I have to run to the emergency room, but I am now convinced it is the Imuran. I don't want to go on to anything stronger but I don't feel I can handle this medication because what it is doing to me is debilitating. Has anyone else had a reaction like this? Not a full-blown allergy but bad enough to stop medication? Also curious if anyone was able to mitigate the allergic reaction by reducing the dose or taking half in the morning and half at night? I am afraid to take it right now but have to wait a week to talk to my GI about what my other options are moving forward.

Any insights are greatly appreciated. Thank you.

 

[iiica]

My doctor has prescribed me Imuran as well. After doing a lot of my own research, I have decided that I will not take Imuran. There are too many variables, and quite frankly, the side effects would feel either just as terrible or worse than that of Crohn's.

I've tried everything under the sun, and nothing has worked. Pentasa, Entocort, prednizone, dicetel, and even natural methods. I have felt the full side effects of each and every one of the medications that I have been on. As they prescribe me stronger and stronger medication, the side effects become worse and worse.

As of right now, I'm sitting out of remission and I'm not taking any medication at all... I wouldn't suggest following my lead, as it's obviously not very smart, and I am in a lot of pain on a daily basis. However, I have pushed my doctor's for a second opinion.

I was only diagnosed last year, and my GI has prescribed me everything under the sun and then some. Quite frankly, I feel like he's pushing medications. If there's any advise I could give you, it would be to look into remicade.

My friend's brother, who also has Crohn's disease, has been on Remicade for 2 years now. He had a severe case of Crohn's, even worse than mine, and even worse luck with medication. Since he has been on remicade, he has yet to fall out of remission. This is also something that I will be looking into. The tricky part is finding a way to cover the costs since it is not covered under ohip.

Not sure if this helps, but I thought I would share my experience and opinion.

I certainly hope all works out for the best.

 

[DJW]

Hi and welcome to both of you.

Iiica, I see you're in Mississauga. I'm in Burlington. These meds are expensive and very effective for a lot of people. Check out the trillium drug plan link in my signature.

Not sure if either of you have tried but some people do well through diet management. Keep a food and symptom journal to pinpoint problem foods.

Novax67. Please be careful. Untreated crohns can cause far worse problems than the slight risk medications carry. When I was first diagnosed nothing worked. No meds, no diet, or natural remedies. I have had enough complications from this disease to last several lifetimes. Some near fatal complications.

Sending both of you my support.

 

[Orchid]

This can be normal, Imuran sometimes has flu like symptoms starting about three weeks to a month after dosing is begun but you were right to inform your GI. It could go away with a few weeks time, so don't jump off quite yet. Pancreatitis due to Imuran is rare, and the hypersensitivity condition is so rare there are less than half a dozen cases in recorded medical literature in the past few years.

 

[novax67]

Thank you for all the replies. So are my reactions what you would call the hypersensitivity? The throat and chest pain feel like a very mild anaphylaxis type of reaction. Never feel like I am in danger but it is so uncomfortable and painful I can't function for a few hours.

Do you think it is something that could go away? I considered trying to take one pill in the morning and one at night to see if that could help, or just reducing the dosage but I am on about the least amount that I think is beneficial for my weight.

I did not take them this morning and no symptoms today. Maybe I can stay off until I talk to my GI at my appointment on Wednesday about ways to reduce allergic reaction. His nurse did not offer me any advice just said he wanted to see me to discuss going off Imuran.

 

[Orchid]

No, the hypersensitivity reaction involves huge hives, skin necrosis and boiling fevers. You should absolutely not discontinue Imuran without doctor's orders, this could go away in a few weeks. Taking one pill in the morning and the other in the evening helps for some people, yes.

 

[novax67]

Thanks for the information and advice. I do have to temporarily stop this drug because after missing just one dose the difference is incredible. This is the first day in two weeks I have been able to finish a day of work without being too tired, feverish and in pain. Since I can't see my GI until next week there is no way I want to go through more pain and sickness for 5 days until I see him. I wish they would have suggested dosage changes on the phone but since they are leaving me on my own with side effects from the medicine they prescribed me I'm making the best choice for my health. They pushed me to my GP mumbling about having a virus when they knew these symptoms could be related to their prescription and did not check into it 2 weeks ago when they should have. Before I make any long term med decision at this point I'm getting the opinion of another GI who might actually spend time with a patient.

 

[2thFairy]

Pancreatitis secondary to Imuran is not all that rare, actually. My GI told me right from the start that it is not uncommon and generally will occur within the first 7 weeks if it is going to happen. It hit me at the beginning of the 7th week. Several people here on the forum had to stop Imuran due to pancreatitis.

 

[MissCadenza]

Remember if you're on Imuran your immune system is basically borked so any virus you have will take longer to shift. Your shivers etc could well be a virus but your body is taking longer to fight it. And you shouldn't have just stopped the drug because it made you feel better, you're on it for a reason and quite honestly a few side effects are pretty minor compared to the long-term good it will do you. It could be your body adjusting to the drug. Give it a chance, don't just go 'omg' and stop it instantly. I felt like bum the first three weeks I was on it, then my body went 'oh ok' and I've been fine ever since.

Also try taking it at night - I do, and look, no side effects apart from falling asleep slightly faster than normal. No nausea, no shivers, no nothing. You sleep through most of the bad stuff. I'd speak to your doctor but I don't think you're giving it a chance to work. It can take up to three months for it to have an effect. Persevere with it.