Humira : Hi all I wonder if anyone can tell me about... - NRAS

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Humira

02tkwillx profile image
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Hi all

I wonder if anyone can tell me about humira. i have been on 3 DMARDS. None have worked for me unfortunately. I had my app with consultant today and he gave me a leaflet about this biologic and given me a month to think about going on it. I've done some research and didn't like the bits that says you could get bad infections and it could cause cancer. I don't necessary believe this. But would like to hear people's stories whilst being on this also about self injecting.

I have been in the worse flare for a month now, even went to A&E Friday as I thought I had septic arthritis - my feet and wrists were so swollen and painful that I could barely walk or do anything.

I'm on diclofenic which is calming my joints down and I have steroids to hand of I need them, which I Might need to take as I've only got 4 days left of diclofenic and then I think I will flare again. I've stopped my demands ( doctor agrees) so I have a month with nothing other than steroids. During the afternoon my legs and feet are in agony but morning it wears off. Very strange...

Thanks in advance :))

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02tkwillx
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9 Replies
Barrister profile image
Barrister

I've been on Humira since last October. It worked very well for the first couple of months, not quite so well at moment but maybe I'm having a flare. I've had no infections (touch wood!!) apart from flu in December. The injection is fine - a minuscule needle which you hardly feel going in but the liquid itself stings badly. Even though I take it out of the fridge an hour before injecting, it still stings, but only whilst injecting, then it's over. I'm very lucky in that I get no localised side effects, but do get neck and headache about 24 hours after which lasts another 24 hours. Apart from that it's okay although I've got some hair loss ( but that could be my underactive thyroid causing that). Like you, I did lots of reading before agreeing to it, had flu jab ( still ended up with flu- like illness) and talked about getting the shingles vaccine ( but they didn't have it here in Saudi so didn't get that!) I was very concerned about starting Humira but it really hasn't been too bad at all. I just hope that it starts to properly work soon. Good luck in making your decision. Clemmie

02tkwillx profile image
02tkwillx in reply toBarrister

Thanks for your reply clemmie. So you still get flares being on this, what do you take when it happens?

Do you inject yourself, how long does it take?

Sorry for all the questions, I know I could ask my rheumy but prefere to ask someone who is actually using it.

I think i will give it a go, I'm in a flare at the moment and will be using steroids until I go onto this.

Thanks again for your reply it really helps. :))

Me and Humira get on great. Call me weird, but I enjoy injecting! It was scary at first but after a few months I got so used to it that I've started to have the same problem as I have with pills ..... 'have I done my injection? Can't actually remember doing it ....'.

I prefer the pre-filled syringes to the auto-injectors because if the humira is too cold it does sting, but with a syringe you can just slow down the plunger to lessen the sting. However, I've found that tucking the syringe, still in its packing, under my armpit for about 15 minutes before injecting does make it just the right temperature and virtually pain-free.

DMARDs made me feel better and loosened up my joints, but my joints still remained swollen for years. Humira's the first thing that's got the swelling down. And I feel fine. I'm not worried about long-term risks. They exist, sure. But my psoriatic arthritis has the potential to be a serious health risk in terms of co-morbidities & when it was uncontrolled I could well imagine getting pretty sick, not to mention depressed.

02tkwillx profile image
02tkwillx in reply to

I'll remember that - putting it under my arm to get right temp. Ha ha

Pleased it good for you. Can't wait to try it as I have lots of swelling and extreme pain. Thanks for your reply postie :))

in reply to02tkwillx

I really hope it works for your swelling and pain. I really think biologics are the way to go for many of us and can be a game changer.

Barrister profile image
Barrister

I'm not sure if I am having a flare or if it just isn't working for me properly yet. I was advised to wait a while longer so that's what I shall do. I will try Postle's tip about putting it under my arm to warm up! It may make all the difference. It's no problem giving the injection myself. I used to be a nurse but that makes no difference. It's a whole different ball game when you are sticking that needle into yourself! But as I said before, the needle is so fine and tiny you hardly feel it going in at all. I think it's well worth giving it a go. I'm desperately hoping that it works as I can't take anti inflammatories as they make my colitis flare. Hope it goes well for you. Clemmie

02tkwillx profile image
02tkwillx in reply toBarrister

Thanks for your reply clemmie. How long have you been on it?

I really hope it begins to work for you. Some say it works after the 2nd one then for others it takes longer. I will send a post when I start it. DMARDS don't work for me so im praying this will have an impact. Take care :)

Barrister profile image
Barrister in reply to02tkwillx

I think it started to work after the 2nd dose but it seems to have not worked quite so well since then. I started it in October. I'm hoping that it really kicks in soon. I failed on DMARDS and can't take anti inflammatorues either so am stuck with pain at the moment although it isn't too bad. Hope you get on well with Humira. Clemmie

dazzlebandit profile image
dazzlebandit

If you are ready to get better, take it! I do know that all meds right for one person may not be right for the other, but all I am saying is that all side effects are always worst case scenarios. In our cases, feeling better is always worth a shot! All of the meds for auto disorders cause these things and some are actually cancer drugs.

I too, take it out of the fridge well before injecting!

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