Does any one else have drug reactions like this? HELP!

[woodsprincess]

   I have a real sick feeling from Imuran& 6mp. I got terrible headachs from remicaid 3 months after,lasting about 2months ever day. My doctor is not happy. Does this happen to any one else?I'm now on 9mg. endicort only and not doing very well! I fear I will end up in the hospital again!

[thomasonkerry]

Ihave had Crohns for 6 yrs now. I tried Asacol,Pentasa(allergic to these-makes Crohns worse)6MP(pancreatitis from this)Methotrexate(currently taking)Cimzia(currently taking)I have also taken prednisone and entacort.I was very afraid to take Methotrexate and Cimzia. So far have been on Methotrexate for 17 months-no side effects. And 2 doses of Cimzia. When I had first been diagnosed with Crohn's,my first GI dr tried but finally told me I was a medical mystery! Now I go to Freodtert and the Medical College of Wisconsin. They have a whole team of GI drs there. Plus since it is also a teaching facility,they keep up to date on all the latest info on Crohn's and other digestive problems. They have an IBD clinic. So,maybe you need a second opinion or just a new dr.

[lizziecee]

Hi Christine,

Since Remicade didn't work for you, has your gastro thought about changing to a different anti-tnfa immuno-suppressant, such as Humira or Cimzia?  Otherwise, you might like to think about methotrexate - I have recently come off it after 9 yrs, and it worked well until I had an allergic reaction the day after my Remicade infusion, so we have discontinued it.

Unfortunately, with Crohn's (if that turns out to be the ultimate diagnosis), it can be a matter of trail and error, until you find a drug that keeps your symptoms in remission. Sometimes feels like looking for the Holy Grail!

I would assume, and hope, that your surgeon took biopsies of the small intestine for pathology reporting. I can't understand why you are being prescribed such potent drugs without a definitive diagnosis.  It is not rocket science these days, with colonoscopy and endoscopy.  

Take care, and hope you soon find some relief.
Liz.

[NinaDavis]

About 3 yrs ago I drank Sodium Hydroxide on accident.
It was in our town drinking water.
about 2 weeks after I ingested the Sodium Hydroixde, I started having right side lower flank pain. they first thought it was Appendix.
But after a Ct-scan they found inflammation in sm intestine.
I had to be in  the hospital for 15 days, they sent me home with a Picc-line which fed me all day. they tried 6MP and Remicade which did nothing. so They had to remove pieces of my sm intestine.
Now my sm intestine is acting up again. I am allergic to steroids in high doses. so it's harder for them to get me under control. Now after another 4 day hospital stay, They wanna try me on Immuran.
My problem here is they keep running test after tests on me for crohns disease. and every test they do keeps coming up Negative for IBS or Crohns or any of those diseases. So with all the side effects this drug has, and with them still not able to diagnose me. I wonder if I should let them use this drug on me.... Christine Davis

[lizziecee]

I was violently allergic to Imuran - after only two doses I came out in a rash all over my body, vomiting and diarrhea. My gastro then prescribed methotrexate which has kind of kept me well for the last 8 yrs, but I now have strictures in the small intestine, and inflammation around the terminal ileum, so we suspect it is not working anymore. However, it did give me 8 yrs of almost normal life.  I asked about the new biologic anti-TNFa therapies (Cimzia etc.) but as I have a history of breast cancer, with lymph node malignancies, my gastro said it is too risky to prescribe them for me, as they can cause lymphoma. I will be having surgery before Christmas and now wonder how I will keep the disease in remission afterwards.  I was on steroids (prednisone) for 30 yrs, but the side effects on my bones have given me osteoporosis in my hips, hands and feet, so that is a no no. This is such an insidious disease and I think only our nearest and dearest fully understand how isolating it is. Some friends are still embarrassed when you talk about Crohn's - you would think we had the bubonic plague and it was infectious!  

I do hope you find a medication that suits you and keeps the disease in remission.
Take care,
Liz.

[luckygirl317]

I am in the same boat. I tried imuran, after a week the nausea was so bad I started vomitting and couldn't stop. I then went into a crohns flare up and when it was all said and done within in two days my potassuim levels had dropped to the point where I was lucky not to be in the hospital. I tried Humira and was allerigic (hives), tried Remicade it did nothing. Been on so much prednisone that I get the side effectis almost instantly (moonface, sleeplessness etc) and my bones have been affected. Entocort did nothing but give me side effects. I'm maybe going to try Cimzia in the new year, but the humira was just in Oct. and the Imuran was last week so I'm giving myself a break over the holidays. I was diagnosed when I was 19 (14 yrs ago) and had surgery 5 yrs ago. I had almost a foot of lrg & sml (terminal ilieum) removed due to scarring and inflammation. With the way I respond to meds I suspect I will have more surgery in my future. BUT at least when in the hospital there's no laundry to do, cooking or cleaning, I try to think of it as a poor girls holiday.

[CFB25]

Imuran has always made me feel quite nauseous. My specialist advised me to take it at night instead of in the morning so that it would not ruin my day with feeling sick. I am not sure if it is less effective this way....but at least I am not feeling as sick with that. I don't know if that helps. Hopefully they will be able to find something for you that works. All the best!