Is it time i tried something else?

[Ellen_M]

I think I already know the answer to this question, but always nice to hear other people's opinions/experiences!

I tried humira 12 months ago, for 12 weeks but it was halted after I ended up having surgery to remove three strictures. Within six months I was showing signs I wasn't in remission. I restarted humira 12 weeks ago today. I know it takes a while to kick in, but I'm not feeling any improvements at all yet. Bowel movements are more loose now than when I first started the injections, there is more pain than I had before, in the last fortnight I have had ulcers in my mouth, and in the last week I have developed two Erythema nodosum on my legs.

Just wondering if it's time I admitted the humira is a fail,or if I should stick it out a little longer?

 

[SupportiveMom]

It can take 6 months to show signs of working. Don't give up yet.

My kid has been on it 7 months. I didn't think it was working as her symptoms didn't decrease or change. It was her MRE that showed the difference that healing is taking place. We also had a blood test to determine if there were antibodies or if the drug was at the right levels in her blood. It can help determine if you are on the right dosage for it to work or if you need to increase.

I also can't say enough positive things about combining Humira with an immunosuppresive. It is the only thing starting to improve her symptoms. I know its hard to wait but it can be worth it.

 

[nogutsnoglory]

3 months is the standard time to judge a biologic and if it was helping you should have seen changes by now. You not only haven't been helped but got worse, so, yes I think it's worth discussing other options.

 

[Ellen_M]

Thanks SupportiveMom and nogutsnoglory. It really helps to hear others views. I've been in contact with my IBD team and have appointment next week with GI.

They've suggested prednisolone to help clear the erythema in the mean time, but to be honest, they are not troubling me other than they look unsightly. I really hate taking pred, so I think I'd rather wait and use them as a guide to see if humira does start to kick in, whilst I await my discussion with GI to see where I go from here.

 

[SupportiveMom]

I suggest asking about the Humira-Prometheus ® Anser™ ADA test. It can tell what (if anything) the drug is actually doing with respects to dosage, antibodies, etc. I had given up on Humira but based upon that test & switching her other drug things are actually getting better. We had to pay for it, but was reimbursed by insurance. There are only so many drugs to try. The last thing you want to do is dismiss something that has potential. Without the testing it is hard to know.

Good luck & keep us posted.

 

[Ellen_M]

I saw my GI, and he has suggested combining the humira with the immunosuppressive mecaptopurin. Fingers crossed!

 

[SupportiveMom]

Hope it does the trick Ellen. We first did humira & methotrexate and no changes so we just switched to Humira & imuran. Sometimes it takes a few to find the right combo. I'm not sure this is the right combo yet, but things are better than before. 8x a day versus 14 is an improvement!