Humira trouble.

[Lulabelle]

Hi,

I hope I can get some advice. I have been on humira since Feb 2009 and it was brilliant. In May 2013 with the go ahead from my consultant I came off it to see how I could manage without it. In October 2013 I went into a big flare. I got put back on Humira in December 2013 and it got things relatively under control. I had a wobble in about March 2014 where my new consultant advised me to inject just once a week apart from the next. It fixed the problem. For a month now, I have had symptoms; diarrhea after eating. I have no other symptoms, I eat (can't manage large meals and can only manage basic low fibre low fat foods) and then I feel this horrid 'dropping' feeling in the pit of my stomach like you feel when you feel dread or are going down a rollercoaster, I then need to go to the toilet and I'm having diarrhea about 8-10 times daily but if I don't eat loads I go less. I have the odd mild cramp but this is in relation to having eaten. My consultant told me to start injecting weekly and Friday was my 2nd time injecting weekly. Things have not yet improved. Do you think I need to give it more time or am I looking at a fail on humira? I refuse to go on prednisolone and do not want to go back on remicad because I have had 2/3 fails on it over the years. I wish I had never come off it ever and I detest my old consultant for just allowing me to without having a more solid plan in case of a fail. I feel so worried about what will happen if this doesn't start working. I am currently off work yet again because of my urgency and frequency of needing the toilet.

Help, need to advice/reassurance and/or hope....

Thanks

 

[theOcean]

It sounds like your stomach might be distended...

It may not be that Humira has failed for you. Ask to get an antibody test to see if you've developed any to Humira, and I would also call your doctor and request possibly starting a short course of prednisone and adding an immunosuppressant like Imuran/6mp/Methotrexate. Those are really good at helping to keep you in remission.

Humira is a biologic that you're less likely to develop antibodies to if you stop (unlike Remicade), but it's still possible it happened in the time you took a break from it.

 

[Lulabelle]

I was tried with imuran years ago and had a bad reaction so they won't give it to me again. I also reacted terribly to 6mp and seized up, never allowed on that again either. Also, methotrexate is dodgy for women of child bearing age, isn't it? I just feel lost at the moment as I thought I had the last flare more or less in remission. They haven't done my bloods yet or scheduled me into their clinic. I need to go in and chat and get my bloods done as it doesn't seem to be working. I just don't know if I need to give weekly humira time to see if it will work or try something else.

 

[theOcean]

Methotrexate wouldn't allow you to get pregnant, from what I remember. So only if you're planning on starting a family would that be a concern.

Otherwise, if you have failed Humira, there are always other biologics out there! Cimzia, vedolizumab, and more and then still others coming out soon. You're not out of options!

You really do need to get your bloods done. Are you able to see your GP to do that? I think it's really important. The antibody test for Humira would lessen the suspense of waiting for it to work, too - that's something you need to contact your GI about and I would highly recommend it.

 

[Lulabelle]

I'm surprised they haven't had me in to take blood yet. The specialist nurse is on annual leave all next week. I am going to have to contact the consultants secretary to ask if I can be put on the clinic list. I'm definitely not being advised of what to do over the phone, I want seeing in clinic to speak to the consultant himself, I have lots of questions and I'm not being given a prescription for steroids and sent on my way. Time is against me, I have been offered a new job and I need to be well before I am seen by their occupational health dept otherwise they won't give me the job. At least if I am back in my usual job soon, I can say treatment needed tweaking but I am feeling better etc so fed up, it's going to ruin me getting this job that I am so keen to have, I just know it...

 

[theOcean]

Oh no... I really hope it doesn't interfere like that. You're eating low-residue, right? Have you tried eating smaller, more frequent meals during the day? Do you have issues with lactose, or possibly another trigger food you could maybe eliminate?

 

[Lulabelle]

I can't eat anything but smaller frequent meals and yeah I am having low residue as anything else does not go down well. I had avocado and scrambled egg the other morning and my stomach went crazy, sounded like a volcano - literally! I do need my bloods doing now it seems humira isn't working. Is it possible to go on other biologics and return to humira in the future with a possible better response? Thanks

 

[theOcean]

It is possible, yes! But that depends on if you've developed antibodies to Humira yet.