Question about 6mp pancreatitis

[Karen in Phoenix]

I have had Crohn's for many years, and have been on budesonide. (9 mg a day). My doctor decided it was time to get me off of steroids and on to 6mp. I was one of the 3% that got acute pancreatitis from it, and ended up in the hospital. Has anyone had this experience? If so, what medication did you try next? I want to get off of the steroids and omeprazole, and don't know what direction to take. Also, does anyone in Phoenix have a proactive doctor that regularly monitors vitamin and mineral levels? I think it's time for a change....

Frustrated,
Karen in Phoenix

 

[Johnnysmom]

My son had some signs of pancreatitis but his was due to inflammation near his pancreas. He did have leukopenia and liver issues from 6mp and his GI cut his dose in half and added allopurinol and this worked beautifully for him. I don't know if it would work with pancreatitis but worth asking. Otherwise, Methotrexate, Remicade, Humira, would all be worth trying. I am not sure if Imuran would be an option if 6mp didn't work for you.

My son was on steroids and omeprazole as well. He was able to taper off the pred once his 6mp started working and was on omerprazole about 8 months and was able to stop taking that once his throat and stomach were healed.

It took us 2 years to find the right dosage and for my son to get completely healed. It is a long road but hand in there. My son's GI monitors his vitamin levels about once a year, but does regular blood work because of the 6mp every 3 months. I think his vitamin levels are done more often because he is still growing.

I would ask your GI the benefits/risks for staying on the budesonide versus trying a drug like remicade. My son gets a fecal calprotectin test which measures the inflammation levels in the stool instead of the blood and is much more sensitive than a CRP or sed rate. If you are continuing to have low level of inflammation even though you feel relatively fine you might consider stepping up in the strength of drug you are taking.

 

[KayleighMeek]

I had pancreatitis with 6mp and azathioprine the Drs wanted me to try both. I was hospitslised both times first after non- stop vomiting and my GP sending me to the hospital and second time I was in so much pain my mum had to call an ambulance. It really is horrible to deal with I have never had pain like it. After trying these I tried remicade, humira and then methotrexate each of these worked well for around a year but then I had reactions I seem to be unlucky on that part. The remicade was still the best medication I have ever been on it made me feel like a normal person again.
I hope you find something that works for you.

 

[Karen in Phoenix]

Thank you for replying. Sounds like you've had a terrible time! I appreciate you sharing the medicine information with me. Sounds like we are wired alike! My GI started me on pentasa and I had an allergic reaction to that, too. This huge rash all over my face and chest. It's nice to know I have people now to talk to that get it. Have a good day.

 

[poopaholic]

I also got pancreatitis from azathioprine , then I was put on cimzia which basically did nothing and ended in a resection . After that I tried humira, which gave me drug induced lupus and rhumatoid arthritis . So after that I was on methotrexate which elevated my liver enzymes to high . So the only drug I have been on that helps my symptoms is budisodine/ entocort . I have been taking 9mg for over a year . At one time was on 12mg. I have been on them way too long, probably over two years without a break . They gave me a bone density test and I now have osteopenia . Right now I am symptom free but just had lower scope and I still have mild inflammation in the small intestine. He has spoken to me about remicade but I am hesitant to try more of the aggresive drugs . I know taking steroids for long term is dangerous, so I don't really know what will happen next . I see my GI doctor in September.

 

[poopaholic]

Also I have been on omeprazole for several years now . At one point I thought it wasn't doing anything and quit taking it. I was wrong . My acid reflux returned.