Humira (adalimumab). What is your experience? Good, Bad or Indifferent!

Having had RA for over 10 years, (I am 66) I qualified for Humira recently. For those unfamiliar with this (Google) it is self administered by either traditional injection or, in my case, by the pre-filled pen. My qualification consisted of 2 separate assessments of all my joints (but, funnily not my feet!). I understand that the cost to NHS Scotland where I live, is over £10,000 per year. Given that I inject every 2 weeks that equates to about £400 a shot!

I am also on 3Grammes of Sulfasalazine each day, 5mG MTX weekly (was 20 but liver was failing) plus usual Aspirin, Statin and Metformin (T2 Diabetic)

However! The upside is the change it has made to my life. Improvement was noticed after 24 hours and just gets better. I am now back to walking my 2 Yorkshire Terrorists, some DIY and car washing (which I am just about to do).

QUESTION. Am I really just lucky or does Humira work like this for everyone?

23 Replies

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  • Hi

    I am pleased that you have seemed to recapture your life back and are doing well on humira. I have no experience, but others take it on here and they too seem to being doing well.

    Sci x

  • Hello I live in Scotland too (Edinburgh), and am very happy to hear how much Humira is helping you. You say how expensive it is, but we need to factor in the support we might need if we weren't given these wonderful treatments, I think.

    The cost of joint replacement and support care compared with the contribution you can continue to make where you live.

    Keep well,

    Cathie

  • Thanks for your comment Cathie. The politics of cost are best left for another blog. I am just truly amazed at how effective it is for me, do others share that, and does it become less effective through time. Dogs walked, car washed.

  • Hi,

    I am on humira also and have ' rediscovered' life. The disease is still there and the joint damage still done, but I do not suffer from same fatigue, and aem able to lead quite a normal life.

    I am on it a couple of years now, along with methotrexate & plaquinil , so far so good. Very easy to use, and touch wood no bad side effects, to date.

    My ankles and wrist worst affected, but luckily bloods normal now and hopefully not too much more damage anticipated.

    I am actually going thru a bad patch at the moment, but humira a godsend at the time,iwas so luckly I got on it. Often think many not so fortunate, as cost to state is prohibitive. Hopefully they will soon develop cheaper pill form soon.

    Xx Gina.

  • Hope you get better soon Gina. My feet are usually so bad I can't get around - but I still do Volunteer Driver for local Red Cross (Ayr). My Hospital Shoes are thankfully laid aside for the moment. Nice to get back to my normal extra wide stylish 'boats' - Hospital Shoes not meant for outdoor really, no tread as such on soles, and have fallen several times through slipping on ice, mud etc.

    Regards,

    Brian

    PS - My Rheumy Spec Nurse tells me Humira has varying success rates - just keen to know if anyone has been unsuccessful - and why?

  • Good to hear that this seems to work as I am about to be put on Humira. After 2 years on Methotrexate with side affects to Plaquinal and Sulphazaline which I have now stopped taking. Bit worried about the self injection thing though. FIngers crossed!

  • Good news about Your Humira Richard. The most common way of injecting is by pen. Your Rheumy will (probably) supervise you for your first two. This checks 2 things: (a) anaphylaxis reaction and (b) your technique. Simple really, grab some fat, position pen, press button, count to 10. Done. Can sting a wee bit - but that is nothing compared to joint pain

    I'm off to local Hospital Pharmacy to get my next batch for fridge. (Can't get it via GP/Pharmacy route)

    Good luck. Let me know how you get on.

    Regards

    Brian

  • Hi Richard,

    I don't take Humira but my best friend does and she was a different person within a few weeks and continues to be pain free for the last two years. So I hope you have the same success.

    I now have the Enbrel injections and as Brian says the pen delivery system is a very easy system as he explained, mine even clicks to let you know its finished so good luck Richard and Brian. Axx

  • @ Richard,

    Dont worry a bit about injecting yourself its a doddle, just make sure you have it at room temp, or else bit sore.

    The first injection will be with nursey, but after that you do yourself, of course first few times a bit angsty, but I could safely jab it in anytime, anywhere if I had too.

    The best of luck with it, dont be nervous, you will be very well monitored by monthly blood tests.

    Gina.

  • Hi, I've been on Humira for just over 3 years, it took a couple of months to kick in but I can honestly say it was the best thing i ever did choosing to go on it. I had to stop it at the end of december as I was having an operation in February, and i must say by the end of January I could certainly feel the effects of not having my humira. I hope you continue to improve and enjoy lots of walks with your little doggies.

  • I had my first injection 12 days ago and have noticed some improvement after a massive flare left me crippled after stopping the Enbrel that had lost it's efficacy. I found the pen a doddle after 6 years of using a syringe (When I first had the Enbrel I had to mix it myself). The Enbrel did nothing to relive the fatigue but am hopeful the Humira will but if not I can live with it.

    Long may it work for you and enjoy the walking.

  • I have been on Humira for a 18 months, the 1st 12 months were fantastic, I woke up with a spring in my step, I felt like I had been cured! Then I caught a cold and it did not work quite so well. Now I had a second cold and the worst flare up I have ever had. I now have pain in my hips for the 1st time. Fighting now for some help from the hospital/GP, 3 weeks later I have an appointment at the hospital next month.

  • Hi, I started on Humira 6 weeks ago, having done three injections, I have the pre filled pens too

    Havent noticed improvement so far, but its early days, I am hopeful!! I also take 20mg mtx and 400mg hydroxychloroquine

    DAS doesn't include feet unfortunately!! apparently they cant be counted due to some problem I'm not sure what it is

    I'm very glad for you that Humira works so well, long may it be so!!!

  • Hi there. My RA was mis-diagnosed for over a year initially, so have been playing catch up to reduce very high initial inflammatory score... already suffered some damage to small joints in hands, wrists and left knee too. Treated with injectable MTX 20mg, (due to oral=naused), and Humira 40mg, for past 18 months now... Effects of RA have never stopped, but have reduced, pain is still troublesome despite substantial dose oxynorn/oxycontin and brufen. No dramatic improvement with Humira... but I certainly know when it is due each fortnight, as my body appears to 'crave it' - all the little niggles come back...

    I have had to stop taking it twice - I suffer from Asthma too, and cold becomes chest infection... becomes pneumonia... due to lowered immune response. I do definitely notice a difference without it.

    As for 'does it hurt?' - I inject in my abdomen, allowing it to warm 20/30 mins from fridge temp. does lessen the sting... nothing compared to RA pain though.

    One worry though - recently recovered from pulmonary embolism without cause... (no clots, or flying, etc) - GP checked, and found that this can be very rare side effect. I started on Warfarin after embolism, and I may have to remain on long term to prevent another occurence - awaiting decision by Rheumy.

    Hope my experience helps any-one.

  • I myself am on Humira and "yes" it worked wonders' for me and still does'. There have been a couple off times that I forgot the time of taking it, only out maybe 3 to 4 days, the humira let me know. I started with being itchy all over again. I use Humira for Psoriasis and I did have it bad. Once I took Humira twice I couldn't believe how I healed. I dont' like what they put down for side effects but the way I look at it is what drug doesn't cause something at some time.

    Glad that you found it has worked for you! Take care

  • i will be starting soon on humira and am glad to see the treatment is working for you .....you must be very happy and feel great in yourself with the symptoms decreasing and pain under control.it is nice to hear that the drug works and i look forward to it doing the same for myself.

  • Humira was a miracle cure for me - had been on minocycline, plaquenil, sulfa, MTX (as well as naproxen, and tramadol) - also had 3 1000mg prednisolone infusions over 10 days (doc wanted to get me moving again, while we waited for the sulfa/MTX to kick in - felt brilliant initially, like I could do anything, but the effect disappeared within 3 days). Nothing worked (or it seemed like it might be working, then I'd get worse). I had only been sick for 12 months, but over that time my esr and crp levels were pretty consistently high or climbing, joint involvement steadily increased,and i lost 15kg ( more than 20% of my body weight). My rheumy was very proactive and got me onto humira - said we'd know if it was working within 10 weeks - within 3 days I put my crutch down and haven't picked it up again - feel relatively normal - spent yesterday pulling weeds out of the garden (unthinkable before), and went to the easter show with my kids the other day and walked around ALL day with no real probs. i've gained most of the weight back and everyone who sees me is amazed at the difference. I've been on it since christmas. I have heard it just doesn't work for some (much like the other meds just didn't work for me), and i think the rheumy was gearing up to go though several to find what worked (given my poor response to everything else) just wish the biologics weren't so expensive so they were more accessible - so grateful to live in a country where health care is funded (I'm in Sydney, Aust)

  • Humira was miraculous for me too, with noticeable improvements within 3 days. Over the course of my first year on Humira I was able to get back into strength training workouts (lifting 30+ lb dumbbells), raced a 30 minute 5K, did indoor rock climbing for the first time in my life, and went ziplining, also the first tome in my life! I was able to reduce my MTX from 10 pills to 2 pills and come off my NSAIDs. Howver, about 14 months in, the Humira started to become less effective and I have been in flare now for the past 7 months or so. I think stress has been a factor and I was bit over 100 times by sandfleas in Panama within a month of the flare, which would have introduced new pathogens. I hope to get back to where I was with a healing diet, but wonder if I will need to try a different biologic.

  • WOW!!! I am soooo pleased for you, its soooo nice to hear good responses...... If you have time you can read my experience with Humira - sadly so far unlike yours, but it makes me smile for you knowing that you can start to live again...

    Life can improve and its so very positive.

    Best wishes for the future and long may it continue.......

    Love and light xx

  • Humira worked wonders for me too but began to loose effect after a year! I am now on cankinumab which is around £20,000 per monthly injection but it works wanders for me and is said to be a biologic very close to Humira - they are good stuff!

    I hope your life improvement continues!

  • My word! What dose are you on? I knew it was expensive but didn't realise just how much! I take it it's Ilaris (canakinumab)?

  • Hi - I've just started Humira, had first injection 2 days ago...came on here and did a search for anyone on this drug..... and found you. Glad to hear it was so successful for you - my feet are the main problem too, so here's hoping it really helps me, cos I have forgotten what it's like to walk normally! I'm in Scotland too - and in my 60s.

    This RA has totally blindsided me - two years on , and several medication failures.

    I want my life back!!

    Bit unsure about the "tech" bits on this site - posts/replies etc., so not sure if you will ever see this but if you do, it would be good to hear how you're doingnow.

  • Hiya scotslass333, welcome though sorry you've needed to find us. Just a quick note in case you were expecting a reply from this member. As the avatar is grey & "Hidden" is beside it this means that the member has deleted their account so is no longer a member. I didn't want you to think that she or he wasn't responding to you.

    Maybe if you'd like to post a new question yourself using the "Write a post" box in the top right of the screen? I'm confident you'll receive replies from some of our lovely members who take Humira.

    Hope you have lots of responses & you enjoy being here.

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