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How long should it take for humira and methotrexate to work?

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Ulcerative Colitis
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Posted 5/22/2014 1:42 AM (GMT 0)
I have tried many meds and none have really worked and I have been on humira and methotrexate together for 14 months now and I am still going to the bathroom 5-8 times a day and my last colonoscopy a few months ago still showed active colitis throughout my colon.
My dr keeps saying to keep giving it more time because some meds take longer to work, but me and my parents think it has been more than long enough to give these meds a chance and we hope to try the vedolizumab. We are thinking about changing doctors because this one does not seem to hear what we are saying.
He says that we should not stop taking the humira and mtx because they could be doing a little bit at least to help even if it isn't perfect and he had planned on keeping me on the path I am on now, but yet I know I cant stay how I am now, with my colon still showing the disease so clearly we need other options.
What do you think? How long do you think we should give these meds to work??
Thanks for any help!
Posted 5/22/2014 1:47 AM (GMT 0)
Well, certainly a lot less than 14 months. Both meds take up to 8 weeks to start working.

Your doctor is jesting with you if you have really been on Humira and methotrexate for that long. Find a new doctor who isn't too lazy to do his job. You are a good candidate for Vedolizumab having failed at least one biologic, though I wouldn't be surprised if a new doctor didn't want to at least try one more biologic before going onto the vedo: not sure of the prescribing protocol here.

Edit: Just to make clear, vedolizumab is also a biologic, but a different type to Remicade, Humira and Simponi. The last three all target TNF-alpha, whereas Vedolizumab targets a different molecule.

Post Edited (NiceCupOfTea) : 5/21/2014 7:52:43 PM (GMT-6)

Posted 5/22/2014 2:02 AM (GMT 0)
That sounds like an awful long time to be in exactly the same place! I would definitely look for another doctor that cares. I've read on this site that many people have had good results with Simponi, maybe that is something to think about trying, because who knows exactly when Vedolizumab will be released, and available, and it sounds like you need something new sooner rather than later.
Posted 5/22/2014 2:05 AM (GMT 0)
Yeah. Your doctor is at a loss and the only thing he thinks is that if you stop it you will get worse. I doubt he really thinks you're going to get better. He's just trying to blow false sunshine up your butt. If you're not happy then I would switch doctors but you might want to think of what game plan you are hoping for before you give him the heave ho. Right now vedolizumab is not available and who knows if your insurance company will cover it even when it does become available. Are you sure the fish oil actually helps you? I think it is very overrated and makes some people worse. I wouldn't take it unless you know for sure it actually does help you.
Posted 5/22/2014 4:17 AM (GMT 0)
I find it strange that you started with Humira rather than Remicade even though Remicade has much better statistics for UC. Maybe talk to your GI (whether it be the old one or a new one) about giving it a try before resorting to Vedolizumab which is currently your last option?
Posted 5/22/2014 5:31 AM (GMT 0)
Why hasn't he mentioned changing to another biologic? Remicade has better success rates for treating UC compared to Humira. If it were going to work, it probably would have by now. I hate to say that becasue i am aware this illness is very individual and people have different results but 14 months is a long time to suffer without relief.
Posted 5/24/2014 12:27 AM (GMT 0)
I have already tried Remicade and it did not help me and I also had an infusion reaction so I had to stop getting it. I have tried pretty much every med out there. Would it be worth trying Simponi too even though it follows the same idea of treatment as remicade and humira and they didn't seem to do much for me?
Posted 5/24/2014 12:37 AM (GMT 0)
lauren, i think you should try simponi. it is 2nd best to remicade. i haven't had any appendix pains since i started it in december. it's not able to keep me in remission alone so that's why i added nicotine with it. it seems you always need a cocktail of drugs to get in remission. i have no UC symptoms whatsoever with the meds I am taking.

honestly though, if i had to pick any one of my drugs to stay on indefinitely that i have ZERO side effects from, i'd pick nicotine in a heartbeat.
Posted 5/24/2014 1:48 PM (GMT 0)
Lauren,

How old are? If you are still considered pediatric than that might preclude you from certain medications becuase the FDA requires further studies for pediatric approval.

I only gave Humira 2-3 months before I switched. I started to get worse at the 6 week mark. My GI changed dosages and frequency but it was no help for my symptoms. He was willing to write a script for 3 pens every 4 weeks but I gave up and switched.

A second opinion from another GI would be advisable at this point, it may confirm that your GI is doing the correct thing for your situation or give you other options to consider. I would recommend an IBD specialist, I found that regular GIs were never equipped to handle my case. I ended up at a teaching hospital, usually the best GIs are there.

If really want the flare over with and are willing to spend some time in the hospital then you may want to ask about Cyclosporine. It is the most affective drug in treating UC flares. I used it twice before for flares with success.
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