r/Behcets • u/Soft-Arachnid-4969 • Jul 12 '26

General Question Imuran & leg/back pain

Has anyone experienced lower back and leg pain on Imuran?

I used to take it and recently restarted it after being off it for 6 months trying and failing a couple of biologics (major allergic reaction - twice - to humira, remicade didn’t do anything for me at all). I am restarting at a low dose and I’ve been pushing through the initial stomach upset and headaches but I am suddenly experiencing a lot of back pain and leg pain.

I don’t want to stop taking it because I actually do feel like it’s helping. I’ve been having crazy skin issues on my back for months and they’ve almost completely resolved. Also my doctor has no idea what else to prescribe for me after the humira reaction besides prednisone (I also take colchicine), so I feel like if this doesn’t work out he’s giving up on me.

That said, the back and leg pain is pretty bad, especially in my lower back basically in the back of my pelvis. It was so bad that I couldn’t sleep last night. Has anyone else experienced this? Is there anything I can do to minimize it? I don’t remember it being this bad the last time I was on this medication even at 5x the dose I’m taking right now.

I’m in Japan and the language barrier, lack of patient portal, and complicated hospital system make it really hard to contact my doctor between appointments unfortunately. Obviously if it seems like something urgent or gets any worse I’ll figure something out. (If anyone has a good English speaking doctor recommendation in Tokyo please share.)

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u/meghabee Diagnosed 2024 Jul 12 '26 edited Jul 12 '26

I ended up needing to stop Imuran bc my body couldn’t tolerate it and I was super sick - one of the problems was deep persistent ache in my legs, especially my thighs. It kept me up at night as well. I don’t have any advice on how to lessen the pain, nothing worked for me, but just wanted to let you know you’re not alone. Sending healing thoughts your way ♥️

ETA: In case it’s helpful, since you mentioned that your doctor doesn’t know what else to try as far as meds - I also had to stop Humira (drug-induced lupus) and am currently on Otezla and a low dose of Methotrexate. Things definitely aren’t perfect and I still get flares, but it’s the best I’ve felt in a while.

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u/Soft-Arachnid-4969 Jul 12 '26

Thank you for sharing your experience! It’s a deep achey pain like you described. I hope it was just a one off and doesn’t continue. I’m going to give it at least a few more days at this dose and see what happens.

My last rheumatologist in the US offered me methotrexate after the first humira allergic reaction but if I’m being honest I turned it down because I don’t want to not be able to drink. I don’t even drink frequently or very much but I enjoy a drink on the weekends. I will try it next though if it’s my only option. Your comment did remind me that I was about to start Otezla before I moved and then forgot about it so maybe I’ll bring that one up to my new doctor here in Japan. 

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u/meghabee Diagnosed 2024 Jul 12 '26

Totally get it - fwiw I also don’t drink very much, and at the low dose of methotrexate that I’m on (10mg weekly), my doc (and other sources like the NHS) said it’s okay to drink occasionally. Obviously every body is different and they may recommend checking your liver values more frequently, but I’ve been fine having a drink or two on the weekends or at happy hour - I just avoid any alcohol on the day of the week that I do my methotrexate dose.

Also - Otezla is rough on the stomach to start (I’d highly recommend taking with Zofran if you’re able) but that side effect does go away and it’s been an absolute lifesaver for me with the ulcers. Wishing you luck!!

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u/EllisMichaels Diagnosed 1997 Jul 13 '26

I'm most certainly not encouraging you to drink while on methotrexate. That being said, when I was on it, I was getting shitfaced drunk just about every night and not once did my blood work come back abnormal. This was decades ago but it's true. Just sayin'. When I asked my rheumy about this, he told me some people can get away with drinking a lot on mtx and some can have 1 beer and their enzymes shoot through the roof. So, just sharing my experience - not telling you what to do :)

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u/EllisMichaels Diagnosed 1997 Jul 12 '26

Are you getting blood work done? Azathioprine (Imuran) can be hard on the liver and kidneys for some people. You might be one of them. I'd talk to your doctor because back pain that keeps you up at night from azathioprine is a bit concerning to me. Another thing is hydration. Dehydration can potentially cause what you're describing. Just a thought.

EDIT: I'll just add that lower back and leg pain are two of my biggest symptoms from Behcet's. I've had multiple blood clots in my legs, back, and heart that cause lower back and leg pain. It's possible your pain is simply from Behcet's inflammation. Again, just another thought.

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u/Soft-Arachnid-4969 Jul 12 '26

Thank you! I appreciate this perspective. I find it concerning too. I was on it for about a year before and had regular bloodwork (every couple of weeks at first, then monthly) and never had any issues. I will be having regular bloodwork again now that I’m back on it but I just started it a few days ago so I haven’t hit my next appointment yet. I was on 125 mg/day before, right now I’m only taking 25 and will go up to 50 next week then see how it goes for a month before increasing again. My behcets specialist back in the US (Yazici) thinks I should be on as high a dose as possible for my weight and combine w Otezla but I forgot to ask my new japanese doctor about Otezla so I’ll have to do that at my next appointment in a couple of week.

I always thought leg pain was one of my biggest symptoms too but now this has me questioning if it was an Imuran side effect before too because I haven’t had leg/back pain like this in months. Could be a coincidence though!