Mercaptopurine & Back Pain

[San]

Hey all,

I'm new to the forum from Oz, just trying to get some feedback from anyone experienced with 6mp (Mercaptopurine). I believe I'm having a reaction to the drug but my doctors don't seem to want to listen to me.

I was diagnosed with Crohn's this year. Long story short, I reacted to azathioprine, it locked up my joints. At first the doctors at the hospital wouldn't believe that it was the azathioprine as they said it was "unusual" but finally they listened after I was unable to walk within an hour or two of taking a dose.

I was put on 6mp and have been taking it for about three months. A number of times I have experienced back pain in my upper back between my shoulder blades. It went away but now has come back permanently. It feels as though I have a knife stuck into my back and has spread to my back left ribs. The pain is not usually there when I wake up but progressively gets worse throughout the day. I am also exhausted, sometimes sleeping for the whole day.

I have had xrays & my bloods are good according to my GI at the hospital. She is convinced it's muscular. They have told me to take panadol & nurofen every four hours for three days to see if it helps. Well, I'm on the second day of doing that and the pain is still there, although it is milder. I have slept all day!

I am very concerned as I don't want to stop taking the 6mp as I don't know where this will leave me in terms of drugs to get me into remission.

Any advice / experience would be greatly appreciated, thanks!

 

[Jennifer]

I've not experienced any side effects from 6MP. Lower back pain or side pain is listed in the more serious side effects but says nothing about the upper back. http://ibdcrohns.about.com/cs/prescriptiondrugs/p/med6mp.htm

I think if it were a reaction to the 6MP then you wouldn't have an off and on issue with the back pain (unless you didn't take it daily). What dose are you on and how often do you have blood work done?

Also, back pain is very common with Crohn's. There are a number of issues that can cause back pain so it may or may not be your medication. I had to get physical therapy done on my back simply because my abdominal pain/stress was putting so much stress on my back. Pursue all of your options to get it figured out and taken care of. Good luck.

 

[dpoteet]

San
I have been on 6mp for 19 years and have did not have any side effects until a couple of years ago. My side effects are caused by long term use only. When I first started taking it, it was a life saver for me. I had been on Prednisone for ten years with no remission. I started 6mp and was in remission for 10 years. The only good years I have had since I was diagnosed 29 years ago. I would try to stay with it as long as you can. You will be tired and a little nauseated for a while but that will go away. It has less possibly life threatening side effects than some of the newer treatments. Good Luck!

 

[David]

Hmmm, that your joints locked up when on azathioprine and now you're experiencing this with 6-MP makes me wonder about myelosuppression. Have you had a CBC done during this? I'd talk to your doctor about having a CBC done and if your white/red come back low, maybe testing for TPMT enzyme deficiency.

 

[San]

Thanks for the replies everyone.

I stopped the 6MP last Wednesday and sure enough the back pain has subsided. So has the constant somnolence.

So it looks like it could be the 6MP. I have to stay off it for six weeks.

I'm 29, so if I use methotrexate I have to say goodbye to having kids. That leaves infliximab or humira. I'm pretty upset. I'm lucky that my disease isn't as bad as many others and I'm yet to have surgery. But it's still scary.

 

[carrollco]

I just wanted to add that I'd been on 6mp for six months. I had severe joint pain and no one would listen. Then, last week my blood levels and various other tests show myelosuppression and my liver enzymes were through the roof. Doc called me at 8:00 Tuesday night and adviced me to stop ASAP. Since I'm on Humira too, I'm hoping it will keep me in remission.

I'm wondering if perhaps my body's first reaction to the 6mp was joint pain even though my blood levels were good for five months. I'm hoping the pain will leave now. Some days it is so hard to walk much less do anything else.

 

[David]

I'm wondering if perhaps my body's first reaction to the 6mp was joint pain even though my blood levels were good for five months. I'm hoping the pain will leave now. Some days it is so hard to walk much less do anything else.

That's my guess. Did they test you for TPMT enzyme deficiency before putting you on the 6mp or at any point such as when you began complaining?

 

[carrollco]

No. Darn it.

 

[ThanksP]

I had TERRIBLE upper back pain for the first couple months I was on 6MP. My previous doc brushed it off. I was eventually taken off the 6MP after about 4 months and have never felt that pain again. It felt like being stabbed in the back, literally.

 

[tek254]

I had back pain along the entire length of my spine while on it. ER doc took xrays and felt is was the beginning of ANKYLOSING SPONDYLITIS. Waiting for an appointent with an RA doc to find out. After my GI took me off it, the back pain subsided, however my hip felld like it is going to shear off. Possible link to the "bamboo spine" but have to wait and see. Back pain is a side effect of 6mp.

 

[carrollco]

Wonderful. Just peachy that they tell you these things... I'm one week off tomorrow and while there is some let up, my body is still pretty miserable.

 

[tek254]

Went to doc yesterday and guess what, back on the 6 mp. Oh boy

 

[San]

Hi all I'm back - a year later LOL!

Long story short - in Sept last year the doctor at the public hospital pulled his finger out and finally ordered an MRI of my spine. Low and behold I had a STRESS FRACTURE in my sacrum. This was after another doctor told me it was definitely the 6mp causing my back pain :/ The MRI also showed possible sacroilitis. Then they said it was osteoprorosis and possible arthritis so they put me back on the 6mp. It took till Feb this year for them to finish the MRI's and stuff around and by then I had enough and went private for my treatment. My rhumetologist is gorgeous and he took all the MRI films to the head radiologist at another hospital and he said he thinks it's osteoprorosis and not arthritis.

I've been on 6mp for about a year now, 25mg increased to 50mg for at least the last six months. I was told to stop all high impact exercise.
I now have a long term partner (joy of my life) and I got terrible hip pain AGAIN after having sex. Went to emergency where they said they could see a fracture healing in my coccyx! They think I have another fracture. My bone density came back normal! What the hell is going on LOL! I went for a walk the other day and was in so much pain afterwards.

 

[David]

Wow, that's crazy What test did they do to test your bone density?

 

[San]

Well I just recently had a PQCT scan - I'm assuming that was normal? I've had two DXA scans since the start of 2011 when I started steroids. The second was slightly lower but not significantly

 

[Jennifer]

Did you have an x-ray of your hip? Just wondering cause arthritis does come to mind.

 

[San]

I recently had an X-ray of part of my hip that showed up the coccyx fracture and x rays of my hip last year which didn't show the stress fracture in my sacrum. That only showed on MRI, I kept turning up to emergency saying "I can't walk" and they wouldn't listen cause the x-ray didn't show anything grrrr. I also just had a nuclear bone scan which also came back normal (month and a half after the X-ray showed the coccyx fracture). My rheumatologist is convinced it's not arthritis but I've been referred to one of the best endocrinologists in the state now. It's just so confusing and talking so bloody long to get any answers lol. Had TPMT done earlier in the year it was fine apparently. In for a double next Mon so I guess I'll know a bit more about how I'm going with inflammation then. Might have to switch to Humira maybe? I dunno I'm stumped