Question about Imuran/Remicade treatments/Upcoming GI visit

[Chdklgr]

A little backstory on me: crohns disease diagnosed '99, 33 year old male, two bowel resection surgeries, '99 and '16. Have only taken Imuran, Remicade, and Pentasa. Currently take Imuran and Remicade.

What are some treatments that helped you when Remicade didn't help?

I am currently taking Imuran 150mg daily, Remicade infusions every two months. Some days seem better than others but practically everything I consume causes extreme inflammation. It seems like a lot of people are taking Humira too.. Have you taken Remicade and found that Humira helped more?

I have a GI appt. coming up on Oct 3rd. My doctor had mentioned that a CT scan revealed a possible cancereous site on my intestines, OR it could be Superior Mesenteric Artery Syndrome (considered the rarest GI disorder). He said he'd consult with a vascular surgeon, as it would be a vascular surgery to correct the latter, if it turned out to be S.m.a.s.

I was hoping I could get some opinions that would help me decide what to suggest to my GI. Imuran helps but I'm not sure if it's operating at it's best ability, or am I expecting too much out of the medication?

 

[ronroush7]

Welcome. I became allergic to Remicade. I am currently on Humira . It has been five months now. I can't say whether it is working or not yet. There is also Cimzia,Entyvio and maybe Stelara that you could ask your doctor about. Wish you all the best. Stay in touch.

 

[Chdklgr]

Thanks for your reply.

what kind of symptoms do you experience from the remicade allergy; how/when did you find out you were allergic?

 

[ronroush7]

A few years ago, I stopped Remicade on my own because it was too expensive. That was a mistake because I had intestines that got wrapped around themselves and I needed a resection. About six months later, my doctor started me back on Remicade. A few months later, I had a lesion in my scalp that didn't respond to antibiotics. I had to have surgery for it which I wonder if I could have avoided by just staying on the Remicade the first time .

 

[ronroush7]

Everyone is different with medicine.

 

[Julia S]

What my GI explained to me is that patients develop antibodies to anti-TNF medications at some point. Our bodies are super clever and find a way around the drug. Some people will develop antibodies within months, others will be fine for years before they develop antibodies. Once you have the antibodies, the medication stops working. Switching to another anti-TNF drug seems to work for some people, but for shorter periods of time, as people tend to develop anti-bodies quicker to the new anti-TNF drug as they are often similar to each other and your body is more apt to react and counter the drug´s effect. What my doctor told me is: if you are on one anti-TNF and it is working, keep using it and don´t stop until you develop anti-bodies. Ride the wave til the end. Starting and stopping increases your chances of developing antibodies.

In any case, if seems like your GI doesn´t think your new symptoms are caused by your Crohns, right? So why stop using remicade if it seems to be working?

Hope you feel better soon!

 

[Chdklgr]

Thanks for you reply, no not exactly, he thinks it's the result of the two bowel resection ultimately...if it's s.m.a.s. anyways.

thanks for the information, I wasn't aware that over time I would become immune to the medication...Too bad we don't become immune to the disease haha.