My doc has put me on Tinidzole for pouchitis. and my GI wants me to start Humira. Has anyone taken either one of these meds? I am nervous about starting Humira.
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Tindazole is similar to Flagyl, with the same side effect profile. It is in the same antibiotic class.
I was on Humira for a few years, but not for pouchitis. It was for my IBD related arthritis. I never had any side effects, other than injection pain. I've been on one biologic or another for over a decade with no side effects, just waning effectiveness.
Jan
Thanks Jan. that makes me feel better.
Hi...I've just been prescribed azathioprine and humira. I'm concerned about the increased risk of lymphoma and melanoma..does anyone have any experience of this?
Clarice, not sure about the statistics in adults. I do know when my daughter was at our Children's Hospital here in Kansas City, they said they used to put kids on both azathioprine and a Biologic (Humira, Remicade, etc.) but they stopped because there was a statistically significant incidence of cancer in kids (mostly boys) who were on both. The combination apparently suppressed the immune system too much.
If you try talking to your doctor about this, I would suggest having articles / research in hand when discussing the risk.
http://www.fda.gov/Safety/MedW...mation/ucm247032.htm
"Postmarketing cases of hepatosplenic T-cell lymphoma (HSTCL), a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers including Remicade. These cases have had a very aggressive disease course and have been fatal. Almost all patients had received treatment with azathioprine or 6-mercaptopurine concomitantly with a TNF-blocker at or prior to diagnosis. The majority of reported Remicade cases have occurred in patients with Crohn’s disease or ulcerative colitis and most were in adolescent and young adult males."
http://www.med.upenn.edu/gastr...sieNi12.15.14pdf.pdf
"After accounting for age-specific risks of lymphoma, infection, and surgical complications, benefits of combination therapy outweighed the risks as a short-term and intermediate-term strategy for most patients with moderate-to-severe Crohn’s disease who were younger than 65 years. For young male patients, combination therapy yields greater QALYs but at cost of an increased risk of death from lymphoma."
I have not heard of the first one but I know Humira. I took it for almost 5 years because they thought that I had Crohn's. It was extremely tough because of the injection pain, ten seconds of serious burn and sting that could not be stopped by numbing cremes or ice, which really got in my head and stressed me out all week before I had to take it. It also suppresses your immune system which was one of the worst parts, and I almost always had a cold from November to may sometimes year round. As elmerfudd mentioned above, there is also a pretty nasty cancer risk for young people, I was 13 when I started and my mom was not excited. Finally found out 5 years later that it was doing nothing for me and I didn't need it bc I was misdiagnosed.
While it has shown to work with IBD and people have good results, In my opinion I would say don't take unless you absolutely have to be on it. Doctors always jump to prescribe so many different drugs and this one is not harmless. I don't mean to list all these negatives but definitely make sure it is an absolute necessity for you in the long term and weigh the choices.
I'd be curious to hear what others experiences were. I wish you the best of luck and hope you feel better!
Thank you guys. I'm really not keen on the risks but don't want to lose more gut. Initially diagnosed with UC in 97, had my pouch surgery and have been treated surgically ever since, mainly for adhesions.
I now have some ulceration and inflammation but the biopsies have not been definitive, so Crohns not even definite, although my team (who are usually great) want to go forward with treatment for such, to avoid a resection (and more adhesions).
Feels like a difficult decision for me to make ☹️
I have been on one biologic or another for over a decade. No big issues. But, if I get sick, it can quickly go sideways, so I am mindful of that. Right now I am recovering from what I think is norovirus (made worse by altitude sickness). Two others in my family got sick, but it took them 24 hours longer to have symptoms, and mine were much more severe.
My main problem with Humira was injection site pain, mostly a terrible sting, during injection. I did find that the stinging was much less injecting into the abdomen, compared to the thigh. So, after a few tries, I always injected into the abdomen. Plus, I left the syringe to warm at room temp for at least an hour. I also waited for the alcohol swabbing to dry completely before injecting. Icing the site made no difference for me. I had to have weekly injections too. I was relieved when Simponi and Cimzia became available for me. No sting at all, and I could do monthly injections.
This was for my enteropathic arthritis, and I wound up with chronic pouchitis while on these. So, now I am on azathioprine and Remicade. The combo seems to be the charm (for now).
Jan
Thank you!