Anti TNF Humira

jthomas

I wonder whether anyone has experience in taking the Anti TNF Humira drug. This is probably my next step and I am nervous about injecting myself and the side effects. Any advice would be appreciated.

Wonkylegs

HI & welcome as I don't remember replying to you before - but if I have please forgive me :oops:

I know just what you mean about being apprehensive about starting any new treatment, but in particular one of the newer anti-tnf drugs.

I think you will be surprised just how many people on here have actually tried one of them .... I am currently waiting on a funding decision for Infliximab (the one they give by infusion) for my RA, but if that does not work then I would be looking at humira or enbrel.

I can't tell you about the injections from personal experience, but when I asked about the anti-tnfs on here many replies said how much easier they are than the Methotrexate injections that I currently have.

I hope someone with more experience comes along soon to give you first had experience.

hope it all goes well for you and that it turns out to be the right drug for you.

hugs
WOnky x

scattered

I've been on Humira for about 2 years now. It's very easy to use. The injection comes in a pen device and you just have to press one end of it. You don't even see the needle.

In the beginning I had mild vertigo as a side-effect and a slight injection site reaction that was like heat spots, but that all stopped within 6 months of starting the drug. It works very well on my RA. Unfortunately it isn't strong enough to control my RA on its own so I take it with methotrexate, hydroxychloroquine and prednisolone.

Good luck with it.

dreamdaisy

Hello. I've been on Humira now for nearly 11 months. It takes a little getting used to, but it is straightforward. I take mine out of the fridge for anything up to an hour beforehand- when warmer it reduces the stinging. Luckily I am fat so I can pinch up a good wodge of flab - I hold that hard, hold the pen hard against me and that also reduces the pain.

My first jab (at the hospital) was horrendous - there I learned how NOT to do it. I now find the whole thing very easy - to the point that I had to be reminded by The Husband to do my last one - I'd completely forgotten it was due. This is my third Anti TNF and the most effective by far at reducing inflammation levels:they have been in single figures since the first dose. Pain, however, has not lessened, and the arthritis has spread. One cannot have everything. Good luck with it - keep in touch so we know how you are getting on. We are interested and we care. Dreamdaisy

fester

Had my first Humira injection 20th of this month,like you was somewhat apprehensive but determined to give it a try. Don't know what i worried about, there was nothing to it and barely felt the injection.
Maybe its abit early but after 24 hours i felt different and still do, can't quite put my finger on it, but feel different maybe better idea after next injection 3rd june.
Side effects, had a few, itching on body, dizziness and headaches but i expected it after reading about humira and its pro's and con's.
i've still got aches, pains and stiffness but with the damage caused by 18 years of basically what is neglect on my part what else can i expect, though admittedly not as bad as before.
So all in all so far a positive result though as i said ealier maybe to early to tell. Hope you make the right decision by what is right for you and my best wishes whatever you decide.

tillytop

Hi jthomas - I stopped Humira very recently due to long-term side effects. But it did work well for my RA for almost 3 years. As you will see from some of the other posts on the forum, there are lots of us who are taking/have taken it with varying degrees of success. In terms of the actual injection, I used the "pen" version which was better for me than a "proper" syringe. I used to get bad injection site reactions at the beginning but then it was suggested that if I took an over-the counter antihistamine tablet about an hour before the injection it was much improved and at times hardly noticeable. I also learned from experience that taking the drug out of the fridge for a couple of hours before injecting made it much easier. I know it's a big step going onto something like Humira, but if it works for you it could really change your life for the better. Good luck, whatever you decide. Love Tilly x

fester

Hi all, wonder if i could ask for a few opinions here especially from those on or have been on Humira.
When i first started this i felt different ie better, towards the end of the first week i started aching more, had my second injection Thursday but feel like i'm going downhill eg aching more, feeling off it and more tired than usual for me.
Must admit i've been feeling more stressed out than usual as a few of you may have noticed re my stance and anger over IB/ESA medicals plus worry over Gill who is having second thoughts about having her knee redone or her left knee replaced.

I'm now wondering am i expecting too much too soon? am i still liable to get flare ups etc? or is stress just fighting the benefits of Humira?

dreamdaisy

I've been on it for eleven months now, with fortnightly doses. The first two months were lovely, I felt much brighter in myself, had a small amount of energy - that felt weird - and the inflammation markers were in single figure from the word go.

Now I feel better for about 36 hours, the rest of the time is rubbish. The PA has spread quite rapidly, pain is constant and I am back to my tired, lethargic self. All things are an effort. I am due to see my consultant next Wed, I shall enquire about weekly doses, but I am reluctant to hasten the end of its effectiveness. Inflammation markers are still 1 and 5. Can't really complain but I can't work out why I am still in such pain. What we want from these drugs is not what we get. What we want does not exist. DD

janie68

DD

this may not be right or logical. But the pain you feel even though the markers are well down. Could it be the damage already done by your PA? No meds will reverse damage done already. But then that doesn't explain why you feel so well for 36 hrs. But those 36 hrs are worth it at the moment aren't they I bet. Enbrel for me was the same, great2 days but then rubbish for the rest of the week but that was still better than nothing.

Janie

greeneyedlady

dreamdaisy wrote:

I've been on it for eleven months now, with fortnightly doses. The first two months were lovely, I felt much brighter in myself, had a small amount of energy - that felt weird - and the inflammation markers were in single figure from the word go.

Now I feel better for about 36 hours, the rest of the time is rubbish. The PA has spread quite rapidly, pain is constant and I am back to my tired, lethargic self. All things are an effort. I am due to see my consultant next Wed, I shall enquire about weekly doses, but I am reluctant to hasten the end of its effectiveness. Inflammation markers are still 1 and 5. Can't really complain but I can't work out why I am still in such pain. What we want from these drugs is not what we get. What we want does not exist. DD

Humira was a miracle for me for about 8m onths, then it stopped working altogether... but for those 8 months it was incredible. taking Enbrel now which is utterly useless.

mairibc

i was self injecting humira from january this year until just a couple of weeks ago via a syringe as opposed to a pen. i used to take the injection out of the fridge 15/20 mins before injecting to get it nearer room temp as it took the sting out of the injection. there are varying opinions on whether the pen or syringe is better. you have more control over the syringe i think. anyway, the humira injections did nothing for my r.a. prior to that i was injecting enbrel and that didnt work for me either. i am currently just on 25mg of methotrexate per week and awaiting a rituximab infusion, fingers crossed this works. they promised me miracles with the anti-tnf!!!!
good luck and dont worry. its not as bad as you think its going to be. hope it works for you. mx

dreamdaisy

Hello janie, I missed your post, my apologies.

Thank you for your thoughts on the matter. My bones and cartilage are beautiful. The damage, such as it is from the PA, has been to do with the synovial linings of the joints, namely both knees and ankles.

I'm wondering now if I have developed, or am developing another form of arthritis. Wouldn't surprise me in the least if that is so. I'm thinking this because now it's my toes and tendons, and my hands, shoulders and neck. These are hurting constantly now, not just when I have a flare. I'm not one of these dopey Californian 'make your pain your friend' types, but I am astute enough to realise that as it hasn't dimished in any way, indeed has spread at wondrous speed in the past few weeks, this is a real possibility. (Wanders off warbling 'There may be trouble ahead . . .') Ho hum. DD

tillytop

I'm now wondering am i expecting too much too soon? am i still liable to get flare ups etc? or is stress just fighting the benefits of Humira?[/quote]

Hi Fester, you may have seen my post earlier up this thread re my Humira experience. Re your specific question about “expecting too much too soon” – I think you could be. When I stopped taking it I was told that it would need a good 12 weeks to get out of my system fully – so I’m guessing that it can take some time to build up in the first place and probably to get used to it as well. As Scattered says earlier up it is not always enough on its own so flare ups are always a possibility. I’m also sure that stress and worry doesn’t help matters – and I have seen from your posts that you have a lot on your plate. If you can “hang in there” for a few more injections you will hopefully get a better idea of whether you will be able to get used to it or if/how well it is going to work for you. It can also be a case of managing your own expectations I think. Humira certainly worked for me, but was a bit of a disappointment after Infliximab which worked brilliantly until I had an allergic reaction and had to stop. But, had I started with the Humira, I would still have been pleased with the results compared to the way things were before the anti-tnfs came along (if that makes sense).
Good luck – and really hope that you find it works for you. Love Tilly xxx