Adalimumab and it’s long term side effects

ClareM

Hello,

I was wondering if anyone on here could share any experiences (positive and negative) and any knowledge regarding Adalimumab.

I am due to start this biologic after a year on methotrexate and hydroxychloroquine, both of which haven’t manage to keep my RA under control.

I am feeling slightly overwhelmed and anxious about this new medication and what I may mean moving forwards. The thought of taking a medication for one health condition that could potentially cause other health conditions down the road scares me.

Any advice very much appreciated 😊

Runningman

Only since Aug 2022, so not long term. However, no side effects at all so far.

CarylW

Hello @ClareM

I am sure you will get more feedback from people who take Adalimumab but in the meantime this information may help you learn a a bit more about it!

https://www.nhs.uk/medicines/adalimumab/

It can be very overwhelming when starting something new, so I hope you get on OK with it. We look forward to hearing how you are getting on.

Best wishes

Caryl

jamieA

Hi @ClareM

My PsA developed rapidly in late 2020. I was initially put on sulfasalazine and 4 months later methotrexate was added - neither worked for me. The adalimumab biosimilar Amgevita was added late July 2021. I've had no side effects that I've noticed from Amgevita. I'm more careful in what I do as it and methotrexate leave me immunocompromised. However the benefits of Amgevita to me have been significant. When I was first put on it I could only walk using elbow crutches, I couldn't close my hands or raise my arms due to my shoulder joints. Two months later I handed back my crutches and I'm now able to walk 50-60kms a week. I'm not cured by any means and I've had a number of what I now realise are flares but I'm in a far better place than I was in late 2020 and the first half of 2021. I know everyone is different and how they react to drugs may well be different but in my case Amgevita has had a positive effect on me.

LadyP

Morning... this is an interesting post for me. I got diagnosed with RA in Sept 2021. I'm 65 and had been fit and active all my life then I had the COVID vaccine and shortly afterwards the pain in my legs started. I still blame that vaccine!! Anyway, we are where we are!! I started Methotrexate with hydroxychloroqine and folic acid then late last year I was in agony with the worst flare up ever. Unfortunately because it was twixt Christmas and new year no one from rheumatology could see me. I ended up having to wait till end Jan this year. I cannot begin to describe to you the pain I was in. I live alone so no help!! I started in Benepali (Biologic) in Feb for 12 weeks but got worse. My left leg swelled up and its still swollen!! To add insult to injury I then had a knee Xray and was told it had to be replaced!! I have a walking stick so was still able to get around, albeit slowly. Since 23rd May I have deteriorated further and the pain in my left leg is 😵‍💫😵‍💫😵‍💫😵‍💫. I have now been put on another Biolgic... Yuflyma, once a fortnight (still on methotrexate and folic acid and hydroxychloroquine). Only had one injection thus far but I live in hope...

GP will be phoning on Monday because I really need some pain relief!!

We are now mid June and I still haven't recovered from flare up in dec/jan!!! Been working from home since then and because I've deteriorated in such a short space of time I'm now housebound completely!!

And I still blame the vaccine!!!

I am however a fighter and I will keep fighting!!😊

Apologies for the rant😁

jamieA

Hi @LadyP

I don't want to hijack @ClareM thread but thought I might respond as your story is not dissimilar to mine. I was a fit and active 64 year old when my left knee swelled, then my hands wouldn't close and my shoulders couldn't move - within 6 weeks of it all starting I was diagnosed with psoriatic arthritis. I can fully imagine your pain levels. I'm on sulfasalazine, MTX and the adalimumab biosimilar Amgevita. My consultant described the 3 drugs working together as 1+1+1>3. I think the technical term is synergetic. I see that Yuflyma is another adalimumab biosimilar. By 3 weeks after starting Amgevita I noticed a difference and two months in it was significant. I was asked by the rheumatologist in February to rate my condition - 10 being at my worst before the drugs kicked in. I'd now rate it at 1-2 even though I've been told my left knee needs be replaced.

I know we are all different and we may react differently to drugs but I hope adalimumab has a similar effect on you as it's had on me.

LadyP

Hi @jamieA

Many thanks for the response. You've at least given me some hope that the adalimumab will get the RA under control and reduce the swelling in my left leg. So glad its working for you. It would be nice to post in a month or two with progress😊. Thanks and take care.

Summer2022

I was on Tocizumba for 19 months then it suddenly stopped working

.pain came back with a vengeance. So disappointed it stopped working. Now got bad flare up till they can try another biologic

Anyone been through same x

Summer2022

Summer2022

Been told can't have infusion In hospital for alternative Biologic drug and need to inject myself at home which I will struggle with as my hands are weak

Anyone else been this ?

Lambourne

I’ve been self injecting adilimumbab fir nearly a year now and it has been wonderful, I have had hardly any flare ups and those I have had are minor and only last one or two days. My only worry is that my consultant will stop it for some reason or funding will be cut. I have had no side effects.

Lambourne

Btw the self injecting is very simple and requires very little strength as the pen is preloaded and you just pull the top off.

Sandgrownen

Hi JamieA

Glad to hear the meds have worked for you and you are now mobile. You didn't say if you can close your hands now?

I can't close mine and the consultant says it's just wear and tear. As you know it's very frustrating not being able to close your hands. I've had RA for 3 years now and affects all joints. I can walk now but feet are bad some days.

Would be interested in what meds you think helped with your hands. I came off meth and sulfazalamine due to side effects. Only on paracetamol and lbuprofen now.

Thanks

jamieA

Hi @Sandgrownen

It's a bit complicated in that 18 months before being diagnosed with PsA I was diagnosed with trigger finger in my 2nd and 3rd fingers of my left hand - and I'm left handed. They would lock up in the straight position and it was very painful while it lasted. Due to a cock-up with my GP failing to refer me to an orthopedic clinic it was the week after my PsA diagnosis that I eventually saw an orthopedic consultant who gave me two injections at the base of my fingers and it disappeared. However the issue with my hands not closing due to PsA persisted until the Amgevita kicked in. I can close my hands now but the 2nd and 3rd fingers of my left can't close fully - I can't make a tight fist. The locking of those fingers has returned intermittently - though this time in the closed position. I saw an orthopedics consultant in April this year as rheumatology had told me it was a 'mechanical' issue - so not their aisle !

I do hand exercises multiple times daily and I've got exercise putty which I use as well. My grip is a lot poorer so I use aids for opening bottles, cans etc. but I can still do most things.

Sandgrownen

Hi JamieA

Thanks for your reply.

I too have a poor grip and use aids to open ring pull cans and bottles.

I can tie my shoe laces now with a struggle. I can't make a fist with either hand so my golfing days are over.

I blame the hormone injections I had following prostate cancer as the cause of my RA as the timing fits. I too started with a swollen knee as one of the posts on this thread identified. We are where we are.

Sounds like we have to persevere. At least we can walk.

Good luck.

Woody

I started Yuflyma (adalinumab) 6 wks ago, so have had 3 doses so far, to treat RA and OA, together with the aftermath of many years of rugby. Having waited so long for these meds, being told how expensive they are, I had high expectations. However, so far, no real sign of any improvement. I guess it may just take time to build up in my system, but after 4 years of truly debilitating pain, I was hoping for some early relief?

Does anybody else have experience of this ‘super med’? I used to inject Methotrexate, which seemed to have an instant impact on pain levels, but unfortunately my liver went on strike!

jamieA

Hi @Woody

I still take sulfasalazine, methotrexate and the adalimumab biosimilar Amgevita. Back in February I asked my rheumatologist if I could reduce my medicine intake and she agreed I could reduce my sulfasalazine from 6 pills daily to 5 for two weeks and then to 4 - so from 3gms to 2gms. About 4 weeks after going down to 4 pills I took a bigger flare than I'd had in the 2 years I'd been on all 3 drugs. My rheumatologist said this was because the 3 drugs combined gave a greater result than each drug individually.

When I attended the Nuffield Joint Pain course I met another PsA sufferer who was now onto his 4th biologic as the others hadn't worked. When I was put onto Amgevita the nurse said it was great that it had worked as they had 7 different biologics they could have used. Each different one targets different pro-inflammatory cytokines. I don't think it's an exact science.

KazandNoo

Hi @Woody

I've been on Amgevita,an adalimubab biosimiliar since June 2021,I noticed a big improvement after only 2 days.

I realise the improvement may not happen so quickly or at all for everyone ( I was told it could take up to 12 weeks ) and it has continued to work for me so far.

I experience some nausea and tiredness after each injection but just try to have a quieter day that day.

I have had the occasional flare of my PsA but this is usually after overdoing it or due to stress,which I am trying to learn to manage!

But overall it has been great for me,fingers crossed for you.

AnnieGY

I have R.A. diagnosed in 1995 aged 49 and have tried Sulfasalazine, Hydroxycloraquine, (not helpful) and have been taking Methotrexate for roughly 20+ years. Recently my pain increased significantly and I'm now taking Adalimumab and Methotrexate. I have had 3 injections of Adalimumab (Amgevita) and although I still have some pain still, I have had no noticeable side effects and what is wonderful I have stopped feeling unwell and sickly all the time. I'm very happy with this and feel years better!

AnnieGY

I have R.A. diagnosed in 1995 aged 49 and have tried Sulfasalazine, Hydroxycloraquine, (not helpful) and have been taking Methotrexate for roughly 20+ years. Recently my pain increased significantly and I'm now taking Adalimumab and Methotrexate. I have had 3 injections of Adalimumab (Amgevita) and although I still have some pain, I have had no noticeable side effects and what is wonderful I have stopped feeling unwell and sickly all the time. I'm very happy with this and feel years better!

barnesy28

hi I’m new here I’ve had rheumatoid , osteo and psoriatic for some 35 years I’ve been on most antiinflammatories etc and have been on mtx for over 20 years I take mtx hydroxychloroquine as steroids don’t work anymore and I was on them too long apparently same story with arcoxia I’m having the worst flare up in years and I’m starting adalimumab (yuflyma) on Monday along with methotrexate I shall post how I get on with it I’m hoping there are no side effects and it doesn’t take up to 12 weeks to work !

Emmasknackeredjoints

Clarem I don't regret taking adalimumab. Its helping me greatly. Not as good as mtx, but god that drug almost killed me so I'm happy to take adalimumab. So far so good

CarylW

https://community.versusarthritis.org/discussion/comment/721558#Comment_721558

Hello @barnesy28 and welcome to the online forum. I am glad you have found us and started posting. We try and help each other out with information and support, and I am sure you will get some response after your post.

If you haven't already, do take a look at the information on our website by clicking on the black box above. I am also posting a link below to adalimumbab which may be useful for you.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/adalimumab/

Do let us know how you find the drug, and keep posting.

Best wishes

Caryl

Jackson

I've used Humira since 2002 for managing severe RA with no side effects. Recently switched to a bio-similar, Idacio and the transition has been seamless in terms of health and effectiveness, again no side effects.