Imuran Side Effects

[AIGal73]

Taking Imuran for about 5 weeks, started been experiencing many of the initial symptoms I felt before diagnosis at about 2 weeks. At first thought treatment not working, but labs still heading towards normal range. Still titrating down on prednisone . Skipped Imuran a couple days and the nausea, fever/chills, back pain, abdomen pain, distension, etc stopped. Tried again and back. Called specialist, no information as to whether this is temporary , just simply told to stay on it. I can’t be sick everyday, I can’t function, was getting worse not better. Taking a break until appt this coming Friday.

Has anyone had an intolerance to Imuran? If so, what was successfully prescribed in place? Extremely interested in LDN. Even read something about hydroxychloroquine.

Are the side effects temporary and should just endure it? Better to be sick part of the day on it than all day or worse not on it…..?

Thank you!

[AyrshireK]

Azathioprine/Imuran doesn't agree with some folks and there are many members of the Auto Immune Hepatitis Facebook group who have changed their immune suppression to things like 6 MP/Mercaptopurine, Mycophenolate Mofetil (MMF), Tacrolimus & others. You shouldn't be stuck on something which is causing your more symptoms.

LDN isn't something that's used in the UK but it does come up for discussion on Facebook group every so often with folks from North America, Canada where I presume it is more known.

If you are interested in reaching out to nearly 4000 other folks with AIH and who have gone through the whole gambit of treatment for the condition you'll find a warm welcome and much support. facebook.com/groups/AIHorgUK

Katie

[AIGal73 in reply to AyrshireK]

Thank you❤️

[Bigbluemonkey]

I had exactly the same problem. Had horrendous side effects on Imuran. Told my consultant & he tried me on 6mercaptopurine which is the same as Imuran but has less side effects. That didn't work. Tried Budesonide & that didn't work either. I now take Mycophenolate Mofetil which works well & I feel great on it. No side effects at all.

You must talk to your doctor & get put on something that works & has no side effects. You will probably be taking it for life so you need to be comfortable on it.

Like Kate said there are other ones you can take.

Make you sure you tell your doctor & insist on an alternative.

Take care.

[AIGal73 in reply to Bigbluemonkey]

Thank you!

[Gardengrl]

I was diagnosed with AIH in 2002. I was diagnosed with PBC as overlap in 2020. Originally I was put on Prednisone and Immuran but had terrible neurological side effects- blinding migraines, double vision, literally couldn’t function. Tried MM(Cellcept) and had same side effects. Tried 6 MP and some problem. They upped my prednisone and there I stayed - even having an almost remission weaning down to 2.5 mg- but always liver would flare and eventually would have to go up to 10-20mg. In 2020 Prednisone stopped helping the liver and was also diagnosed with the PBC. Added Ursodiol for PBC but Tacrolimus for AIH. Took awhile but worth and no problematic side effects- until this past December I called it quits for Tacrolimus after rapidly growing pre-cancerous squamous kept popping up everywhere. Retesting since every 2-4weeks and liver numbers are stable… so far.

Prednisone worked for almost 20 years- unfortunately with multiple overlapping autoimmune diseases I need it still at lower dose- but as a sole treatment it worked for the liver , until it didn’t. Tacrolimus is considered “salvage” - when nothing else works- as the potential side affects are daunting. But all has given me time and I’m thankful for every day!

I am in the states so I know health care is different, but I felt that- wow, there’s no way I can do this long term- feeling too. Fortunately I had a doctor then who listened. There are meds that require time to “adjust “ so I think it’s worth giving things a reasonable try-but it sounds like you have. I would recommend telling them you need to try other options. There are many studies I’ve read where AIH patients did Prednisone as sole treatment and did fine. Everyone talks about it like it’s the worst thing, but the Lord used it to preserve me, and it gave me decades.. One of the toughest things about this disease is taking it one day at a time. Be informed and diligent, but then when you have good days or periods of time, do what you can to live as normally as you can. No one knows the future except for God, Wishing you blessings on your journey!

[AIGal73 in reply to Gardengrl]

Thank you

[witchiegirl]

I had more or less the same symptoms on azathioprine/Imurin. I was nauseous from the first dose, getting worse with each dose. At 2 weeks I became really unwell. Muscle and joint pain, and in my gut and back. High fever. Profuse vomiting too. Medics didn’t believe me, or not that it was the azathioprine! It was suggested I try again but on half the dose. I was unwell again very quickly. Similar happened with mercaptopurine. After that I was given MMF and I’ve been very well on that since, probably 9 years now.

One thing to note is the long half life of azathioprine (a measure of the time a certain med takes to clear out of your system once you stop it). For me it meant I was still nauseous, tired and had headache for a week or so after I’d stopped it completely. Just felt generally unwell still but definitely not as acutely ill as I’d been.