Advice on what meds I can try next?

[woops!]

Currently on Stelara & it has been working somewhat. I take imuran and probiotics along with it.

My GI has told me that I have failed all other meds, and when I flair next it will either be experimental meds as surgery is not a good option for me. I developed antibodies to humira, so GI says this means that I can not take biologics anymore.

I have been on, Methotrexate, pentasa, remicade, sulfa, antibiotics, 6mp, humira, and asacol. Might be missing a few on this list.

Anyone got any suggestions that are not biologics? I’m feeling ok right now, but we all know that tomorrow that may change.

Thanks, whoops

 

[ronroush7]

Hi. I hope the meds you are on right now keep your disease under control.

 

[woops!]

Thanks, me too. However, I have to be realistic and at least be researching other option. The Stelara could give me 10 more years, or 10 more days. I hate this disease!

 

[my little penguin]

If you only have antibodies to humira
Then Remicade is still available
As well as cimizia /Simponi
Stelara can be bumped to 90 mg every 4 weeks
But it does take 6 months to be effective
There is also ivig for refractory Crohns

Any biologic can have mtx added to it

You can also partial een (exclusive enteral nutrition-formula)
Which helps biologics last longer
Ds drinks 50% of his calories from neocate jr .

Good luck

 

[woops!]

I developed antibodies to humira and some other component to it. It took a seven day hospital stay, and 4 GI docs to figure it out. And some pretty expensive lab work too.
Upping the Stelara would be an option I didn’t think about. I didn’t think about EEN thanks for the input. Definitely options to look into.
Thanks, woops

 

[Maya142]

Even if you developed antibodies to Humira, you can still try other anti-TNFs like Cimzia or Simponi. What do you mean by "some other component to it"?

There is also Entyvio (vedolizumab). That is not an anti-TNF.

Then there are drugs in trials - there are multiple IL-23 inhibitors in trials. One of them has been approved for psoriasis already and is now being tested in Crohn's.

Then there is Tofacitnib - Xeljanz. It is a JAK inhibitor and a biologic but is taken in the pill form. It did not do well for Crohn's in trials but should be approved for UC next year. Might also be worth trying. It has been approved for RA for years and was just recently approved for psoriatic arthritis.

You could also try a diet, like the IBD AID: https://www.umassmed.edu/nutrition/ibd/ibdaid/

 

[Maya142]

This presentation talks about some of the new options and the drugs in the pipeline: http://online.ccfa.org/site/DocServer/4_ccfa_talk.pdf?docID=32249

 

[dzwilks]

This presentation talks about some of the new options and the drugs in the pipeline: http://online.ccfa.org/site/DocServer/4_ccfa_talk.pdf?docID=32249

You could try Xifaxan. It did fairly well in trials. At one point my doctor, after attending a GI seminar, told me, "at this point the question is not if Xifaxan works, it's why does it work" on the other hand I'm on it for 15 years but I still needed to supplement with Humira.