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possible Humira failing already - opinions?

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Posted 7/1/2014 3:20 PM (GMT 0)
I've been on Humira for almost 5 weeks now, & on Methotrexate for a week & a half.
When I started Humira, I started to feel better pretty quickly - I actually almost became slightly constipated, but once I introduced some fibre (I had next to none in my diet previously to try cut down on diarrhea) that sorted itself out, and while I wasn't better yet, I thought that I might finally be on the road to remission!
Last week though, I started getting diarrhea again. My BMs were in no way solid, I was getting pain, cramps, gurgles and as it continued for a few days, my energy levels dropped - I felt like I did before I started the Humira. I put this down to coming close to my next dose of Humira (I take it on a Thursday & the diarrhea started on the previous Sunday), so I waited to see if that would help & took my third dose last Thursday.
Unfortunately, Saturday was the worst day I had since probably last January/February (pre-pred!). I couldn't leave the bathroom, I was in agony, blood coming out in a way it hasn't in months. I had pains everywhere and zero energy - I thought I was going to pass out if I even went to get a glass of water. Sunday wasn't much better & now today (Tuesday) it's the same again - blood, pain, huge amounts of diarrhea, weak...
So I'm concluding this dose of Humira didn't work for me.

I'm started to think now, if the methotrexate has anything to do with it. The diarrhea started initially two days after I took my first dose (I take it Friday evenings) & then the worst day started the day after I took the second dose. I only take 2.5 mg of it though, so I'm not sure if it could do that so quickly on such a low dose...

I just wanted to get some people's opinion on what you think might be happening...? Do people think it is the mtx? Is the Humira failing? Do I need to give it more time to work? I know I have only been on it for a few weeks, but it's confusing me because it seemed to start working so quickly & I was starting to feel a bit better!
Or is it something else? A blip..?
I know it's hard to know what exactly is going on.... But I'm feeling so lost right now, I'd love to get some feedback.
When I last saw my GI (when he put me on mtx) he said that I don't have an awful lot more options (Remicade, Simponi...if something new comes out by then...) and I'm really scared and upset now that the Humira isn't working or that something has thrown me back 6 months... And I'm going to have to start trying something new - again!
Posted 7/1/2014 4:47 PM (GMT 0)
It could possibly be due to the Methotrexate since one of the possible side effects is diarrhea. I took Methotrexate before, but I didn't experience any side effects, however I took it subcutaneously. I believe I heard that taking it orally is more likely to cause side effects.

I wouldn't give up hope on the Humira just yet since it seemed to be working for you. Are you taking the Methotrexate in order to not build up antibodies to the Humira? You may want to talk to you GI about it and see what he thinks.
Posted 7/1/2014 5:44 PM (GMT 0)
Yeah the reason I'm on Methotrexate is to not build up antibodies to Humira. I can't take Imuran or 6MP & he wants the Humira to last as long as possible.
I've to get my bloods on Friday (two weeks after starting methotrexate) so I'll talk to the IBD nurse then and see what she says. I'm afraid to take my next dose of it, in case I get even worse!

Can you get methotrexate injections in pen-form, or are they syringes?
Posted 7/1/2014 6:35 PM (GMT 0)
My money is on the methotrexate. It can give terrible side effects, and yours began as soon as you started taking it. I had immense fatigue, nausea, lack of appetite, diarrhea, and eventual fevers and massive infection. I was taking a weekly injection of it, I believe 25mg. (Syringes only, but the needle was so thin I literally didn't feel a thing.) This was not on top of Humira, it was after the Humira stopped working and I failed everything else.

Some doctors really like putting an immunosuppressant on top of an anti-TNF, and others feel it is unnecessary. My GI is in the latter camp, and I lasted on Humira for 9 years without an immunosuppressant on top of it. My personal feeling is if you can tolerate the immunosuppressant, go for it. If not, and it makes you feel miserable, then isn't that defeating the whole purpose? As a patient I'd rather have 5 years of Humira alone and feeling great than 10 years of Humira/MTX and feeling miserable.
Posted 7/1/2014 6:44 PM (GMT 0)
Do you think ur doc could test u for c diff? Humira gave me c diff after my first loading dose. Those were the only shots i took because i got sick so fast.
Posted 7/1/2014 6:48 PM (GMT 0)
It's possible you just haven't gotten the full effects of humira yet. Or maybe it's wearing off before the next shot. when did you get your loading dose and when is your next appointment? It could also be the mtx i guess. Sounds like a lot of people have side effects from that. I thought people didn't build up antibodies to Humira because it contains human proteins.
Posted 7/1/2014 7:18 PM (GMT 0)
bania - My GI initially wasn't going to put me on mtx, but after speaking with his colleagues who recommended it, he spoke to me about it & I decided to give it a try...I wasn't very sure before I spoke to him but he wanted to try keep Humira for as long as possible... But as you said, there's no point if it's making me worse than I was 6 weeks ago, before Humira!

bananagirl - I don't think the Humira has given me anything, as I was fine on it for 3 weeks (for the two loading doses) and I'd my bloods done after two weeks (the day after my second loading dose) which was all fine - some things even better than my last blood test which was about 6 weeks previous. So it was working initially! Of course, you can never be sure, I can mention it to him next time and see what he thinks.

notsosicklygirl - That was my first thought, that it was wearing off before the next dose, but I don't think that's it. I did my second loading dose on 12th June (2 injections), started the MTX on the 20th June & the symptoms started again on the 22nd June. I took my next dose of Humira on the 26th of June, and it did nothing. Took MTX on the 27th and things were even worse on the 28th (last Saturday)... I'm getting bloods this Friday, so I will see what they show up & speak with the IBD nurse hopefully.

Guess everything is pointing to the methotrexate.... sad
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