Joint pain/motor function loss & mercaptopurine

[Gracey888]

I’ve been on mercaptopurine since the late spring of last year. A couple of weeks before I was put on azathioprone, but I reacted very badly. I noticed immediately that it affected my mobility and that first week I could sometimes barely get myself off the sofa. I was quickly moved onto mercaptopurine. Since starting these immunosuppressants I’ve had to use a cane and noticed a kind of systemic floating pain in my limbs. In the mornings my fingers can be swollen, some of my face and by the evening one of my ankles. I have been diagnosed with osteoarthritis in my hands but the way I move and the pain correlates to very severe arthritis which I have been tested for and it’s negative. Intermittently I find that there’s a delay in moving my body, so for example I want to lift my arm to open a door, my arm won’t lift. I’ve had a brain scan MRI and found it to be clear. I’ve had blood tests for all kinds of unusual diseases that would affect motor function but they’re all negative. I’ve been found to have vestibular function damage which causes giddiness and wobbling and being un balanced, but again it doesn’t explain the motor function reduction. I’ve been diagnosed with fibromyalgia & M.E the last nine years alongside UC, but I’m not convinced it’s that either. So by quite a lot of clinical deduction and elimination I actually think it’s probably the mercaptopurine and I wonder if anyone else has experienced this as well?

[22Mermaid]

Hi Gracey888,

I was on the same meds, the azathioprone was started off, had so many issues, similar to to your symptoms, felt ill, walked around in a daze, dizzy spells and black outs. Had a full time job, but with the GP and my unions support managed to reduce my working patten. I had swollen painful joints, felt drowsy with no energy, after 4 years changed my meds to mercarpurine, which I could tolerate have to be monitored now, have a blood test and B12 every three months, as I was told that the bones and kidney can be effected.

Maybe you need to talk to the IBD nurses, GP who may refer you back to your consultant. Good Luck. 😇

[Gracey888 in reply to 22Mermaid]

Hi 22Mermaid, i’m glad you’re okay on the mercaptopurine . I have my bloods done every eight weeks at hospital. Sounds as if you have the same problems on as azathioprone as I am having on mercaptopurine. I think I’ve had my B12 checked and it seemed to be okay. I have checked and every five years as I have been density issues from either the disease and or long use steroids. Although I can’t tolerate steroids anymore so mercaptopurine seemed like such a good result in bringing remission. I spoke to my IBD nurse last week and I do actually have an appointment with the consultant next week. Hoping he’s receptive, as I can only think they’ll try everything first (methotrexate 🥴) before biologics.

Good luck to you too

[Gracey888 in reply to Gracey888]

That was meant to say I have a dexa bone scan every five years.

[22Mermaid in reply to Gracey888]

Hello Gracey888,

I have just returned, from giving test samples, blood etc, was told that my dexa bone is T-3, I am prone to breakages!

So I am going to look into my diet again and make big changes, due to having some surgery recently part of my small stomach was removed, now have to really watch what I eat, also am on a vegan diet as unable to digest, but one must not ever give up. Next week I am back for my crohns appt. You Take care . 😇

[Levradoll in reply to 22Mermaid]

I’m interested in this post. I am also onmercapopurine for the last three months (100 mg just dropped down to 75mg and have had previous allergy to imuran so cannot take this as an alternative) although it has helped my chrohns the side effects of nausea and extreme tiredness are almost as bad as the chrohns! I have asked my dr if there are any extra tests I should have and he has only recommended a blood test every two weeks to check absorption and liver function . I have read that I should get a more frequent Pap smear and bone density but he said there was no need for it. Should I insist ? I’ve read it loads of times that I should be having these extra tests. Also does this chronic tiredness ever go away on this medication ??

[22Mermaid in reply to Levradoll]

Hello Levradoll,

Different people can tolerate, medications in different ways, some may not be suited with the body stucture. I was on azathioprone for 4 years, was told that I have to tolerate, as they take a while to settle down in my system, but NO, I just couldn't take it any more (also a blue card holder, taking steroids). I was like a zombie, mind was overactive, but the body was so tired and shattered. I was in a full time 'responsible' job, where other people's lives would be at risks. I had all the after effects you are having, constantly ill, then my meds were changed to mercapopurine in 2009, where I felt like a human, as these were suitable for me, I am monitored regularly with B12, blood etc. tests. Changed my diet, also fluid intake, increased it to having plenty of boiled cooked down water. Please be patient, and get in touch with the IBD helpline, probably attached to the hospital or ask your consultant. I am not completely recovered, but doing much better, I still have off days.

May I wish you all the best, big gentle hugs 😇

[Levradoll in reply to 22Mermaid]

Thanks so much for your reply, I just don’t “feel right” on it. As of 1st May this year some new chrohns/colitis medications are now covered under PBS in Australia so I am interested to see which ones have been added, my surgeon seemed to think some seemed to be suitable for me at a much lower cost.

[22Mermaid in reply to Levradoll]

Hi Levradoll,

You must go back to your GP or Consultant to seek help,

as these meds are not agreeing with you.

In England the format is so different, I am so lucky that I

can get in touch with some specialist IBD nurses, with their

backup and advise it really helps me, like a life line, especially

with all the cut backs on the NHS. All the best. 😇

[Levradoll in reply to 22Mermaid]

Yes, we are really short of gastro surgeons in my state and my surgeon is on paternity leave, it’s super tricky but you persevere and carry on !!