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Has anyone ever tried Humira for a 2nd time?

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Ulcerative Colitis
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Posted 9/23/2015 3:30 AM (GMT 0)
Has anyone ever went on Humira after being off of it for a few years?? I am in desperate search for something that might work for me. I have been on Remicade (didn't work...won't let me try again due to antibodies), Humira (quit working), Azathioprine (allergic - serum sickness reaction), mesalamines/pentasa (didn't work), Cimzia (didn't work), Entyvio (worked but developed burning skin issues and got sent for a brain MRI and have a small area of the brain that has "possible early stages of de-mylentation" - so I will not be on entyvio anymore)

Not willing to take Prednisone since I have osteopenia and I currently have a broken foot that hasn't healed after 7 weeks in a non-weightbearing cast.

So if anyone has restarted Humira or has any input on what a different medication I can try is. Please let me know :)

I take methotrexate, vitamin D, and calcium right now and nothing along with it.

 

Posted 9/23/2015 3:57 AM (GMT 0)
Could you try simponi?? I'd think it would be better to try something new since you know the other drug is a dead end anyway. I'm sorry you are stuck. Simponi is my last line of treatment, too, unless I can get medical marijuana someday.
Posted 9/23/2015 9:50 AM (GMT 0)
There's also a biologic called Xeljanz but I don't know if it's been approved for UC (it's used for RA like Remicade, Humira and Simponi) so not sure about insurance coverage.

From your long list of failures, it wouldn't hurt to have a surgery consult just in case to be prepared. The same thing happened to me....none of the meds worked. Best of luck.
Posted 9/23/2015 12:22 PM (GMT 0)
It's probably time for you to seriously consider surgery.

My GI told me that she doesn't re-prescribe previously failed biologics. She will increase the dosage and/or frequency of the biologic before moving on to the next, but wouldn't allow me to try Humira for the second time (the first time it did absolutely nothing for me - even when bumped up to weekly injections with 6MP usage - except give me an insane headache) after I failed Remicade. She was concerned it would be a waste of valuable time as my health would inevitably deteriorate and I could be trying another biologic like Entyvio or Simponi, something my body may have a better chance at responding to.

Based on my experience with biologics and this disease in general, I opted for j-pouch surgery as my treatment plan. Although I am half way through the process (completed step 1 of 2), I am happy with my decision and feel much healthier already.
Posted 9/23/2015 1:34 PM (GMT 0)
Given your case history and the fact you've tried most medications, I'd seriously consider surgery. It's given many their quality of life back.

If you don't mind me asking, I'd like to know more about the brain mri and entvyio. As entyvio isn't supposed to affect the brain. Was that reported to the fda? If not, then it should be... Could be important.
Posted 9/23/2015 11:59 PM (GMT 0)
Try IVIG. Pretty awesome stuff if you can get it.
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