I had my first injection last Saturday and won’t be having another! Sheer fluke blood tests were booked for Thursday and the GP rang me Thursday evening. Sodium levels had gone very low which could lead to a coma. I’m now taking SIS electrolytes to try and raise them with more blood tests next Tuesday. I have been advised to go straight to hospital if necessary.
Two days after having the injection I started being very lethargic, my eyes seemed to be bleary and I had a cough; all symptoms are listed under serious side effects.
i had been relying on this biologic to help relieve the RA. At the tender age of 73 I was diagnosed 18 months ago and have been on a constant roller coaster of pain since then.
Has anyone else had the same experience with Adalimumab?
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I didn’t get past 2 months on this although I had side effects after the first injection. I lost the power on my right side. Wished I stopped it sooner I’m still haven’t quite hit the power back 5 months on . Also have permanent tinnitus.
I’m sorry to hear about your continuous problem and can’t understand why they let you carry on with it if you had side effects after the first. Are you on a different one now?
I'm really sorry to hear about your reaction to Adalimumab. I take it along with mtx for the same reason as you by the sound of things, i.e. your RA is poorly controlled with DMARDs alone. I know it has some dangerous serious side effects, and even the non-dangerous ones can be pretty nasty (in my case, the worst is terrible fatigue). However, frequent flare ups are also horribly debilitating, and for some people it seems to be a case of 'choose your poison.'
I sympathise with your predicament. On the way to Adalimumab I tried sulfasalazine with mtx, and that made me extremely poorly (my kidneys protested big time and I was advised to cease the sulfasalazine pronto).
I'm going to stick with Adalimumab for a while because my RA is crippling without it. I suspect most people who take it have a similar attitude. When two of the side effects of a medicine are death and cancer, you have to be pretty desperate to consider taking it! Sadly, that describes quite a few of us.
It seems you were one of the unlucky ones when it comes to life-threatening side effects of Adalimumab, and I'm very pleased it was picked up. Keep us posted on how things go from here. When you've recovered from your scary experience you are still going to have the RA to deal with. I pray you find a way to overcome it in the end.
Thanks for taking time to reply. A very appropriate phrase - ‘choose your poison’. I take 25mg MTX and Sulfasalazine , the only side effect being loss of appetite and I have to force myself to eat a healthy meal every day. Flares; days to weeks and now into months and I never know where they will migrate to next. As you say debilitating and after spending Easter in hospital I’m now nearing the end of a short course of steroids. Mentally, I’m still trying to get my head round it all.
I would love to be on steroids permanently, but can't persuade my rheumatologist that the risk/reward balance is worth it.
With my current meds, despite struggling with exhaustion, I can overcome it when necessary through willpower if I don't consistently overdo it, and give myself recovery time when needed. By 'overdo it' I mean operate at more than about 50% of what would be considered normal level activity.
For example, I currently work two five hour stints a week on a kids voluntary project and absolutely love it! But I need to do almost nothing the day before and after each session. That's a nuisance, but a few months ago I couldn't have considered committing to that kind of work at all because periodically one or other or both of my shoulders were so inflamed I couldn't raise my arm, my wrists were so painful it radiated all the way to my elbows, my knuckles were so swollen I couldn't lift a cup without using both hands, my jaw was locked so I could barely speak, and if I left my flat I couldn't be sure I could return because it involves climbing a flight of stairs! As you said, you also never know where the pain demons will strike next! All I can say is they seem to be extremely fickle and have a sense of humour. One day they make you limp one way, and the next day another. It's hilarious (for them, presumably!)
And so the choice for me is between horrid and potentially life-threatening side effects, or being crippled with sufficient regularity I can't plan anything. My solution was to beg for a few weeks of steroids if a flare-up was particularly severe and badly timed. The trouble is my rheumy team wouldn't let me play that game for ever.
I look forward to hearing your updates. Good luck!
I’m sorry to hear you’re having a problem with Adalimumab. My consultant switched me to it after Rituximab. It didn’t work for me but I had no side effects. I’m now on Tocilizumab, which seems to be working so far.
Hope you can find something that works well for you soon.
I have been on adalimumab since October last year - OK the first couple of months but recently getting more flares and in constant pain. I was supposed to have had a 3 month check up with rheumy team - didn't happen. The advice line active for 2 hours afternoons Mon to Fri - always same due to short staff not available contact GP in case of emergency. I have been having regular blood tests (every 2 weeks due to low white cell count ) but GP says he cannot help until I've spoken to rheumy team - so now I have emailed and await the reply before I go on another rant.
I feel for you. Never had that reaction but there are so many meds out there. Hopefully when they get you ‘back to normal’ they will try something else. Must have been scarey for you. Take care
Thanks for sharing your reactions/side effects of Adalimumab, I start this soon so will be very cautious.So sorry its not worked for you and you have had to go through this, l hope they find another biologic that's suits you better soon. I'm already nervous about it. As had reactions to sulfasalazine/hydroxychloroquine it seems to be a uphill struggle with these drugs,
I've only been diagnosed just under 2 years, and completely worn out with the battles let's hope we all find our forever drug soon 🙏 sending you hugs and take care.
Thank you. I was diagnosed 19 months ago and it’s been such a roller coaster of pain so I wasn’t nervous about this at all. I thought it would be a lifeline . I think I shall be nervous of everything now.
Ps I have never seen a list of side effects as long as this before.
"I have never seen a list of side effects as long as this before."
Very true, that! I keep the enclosed leaflets and use them as disposable sheets for the single bed in my spare room. Okay, slight exaggeration, but not far off, lol
Sorry you have had this experience with andalimumab. I've been having humira since it first came out (15+ years) and its allowed me to have a life. I used to have 1 or 2 good days a month now its only 1 or 2 bad days where I tend to sleep more. I struggled a bit recently but put that down to age, stress and being on the same drug for so long. Incidentally my cousin has recently been hospitalised with low sodium levels and she's not on any medication. Hope you get sorted with a drug that works for you.
Thank you for your reply. It’s always good to hear something positive so I hope they can sort me quickly. An interesting comment about your cousin and I do hope she is now OK.
Thanks for asking about my cousin. She was taken to hospital twice recently but is home now and hopefully the meds they have started her on will get her levels back to normal.
Sorry to hear about your reaction which is quite rare I think. These therapies are generally very safe. I've been on advanced therapies for over 20 years and had 9 switches due to having aggressive disease which doesn't respond to most treatments. I've been back on Humira (3rd time) for a number of years and it's the only biologic/JAK which seems to work for me. I hope you get things sorted and find another advanced therapy which works for you. Best wishes, Ailsa/NRAS National Patient Champion.
Ailsa, thank you for replying. Why were you taken off Humira twice when it’s the only one which works for you? In one respect I’m fortunate in that I have only had RA for 19 months; really don’t think I could have coped for 20 years. I admire you for your resilience. Jenny
I went onto it for the first time in 2004 after Infliximab and Enbrel (we didn't have as many advanced therapies then as now) and after I developed Uveitis (inflammation in my eyes) and had been having treatment for that for some time my eye consultant wanted to see if we could find another biologic which might be able to control both joints and eyes. So, I came off Humira and over about 15 awful months tried Cimzia, Abatacept and Tocilizumab and none of them worked for me so I was on large doses of steroid for some months. I think I went back onto Humira then and when the JAK inhbitors came out I tried Baricitinib as my eyes were still periodically flaring, that didn't work so I then tried Sekukinumab (IL23 for PsA as I have a bit of Psoriasis and am sero-negative), and guess what? That didn't work either. So went back onto Humira for 3rd time and my eyes have been quiet for some time but for some reason flared 10 days ago and so am back on Dexamethosone and Nevanac to get this flare sorted - when you get a flare it causes fluid build up in the back of the eye which causes your vision to blur and I've already lost the useful sight in my right eye to Uveitis so am totally dependent on my left eye! It's like plate spinning sometimes trying to keep this disease under control isn't it? 🤪
I had three injections and that was me done with them! Awful side effects...a couple of days after the injection, I'd get a really bad cough with a full blown chest infection after the third injection that needed two lots of antibiotics. My nails peeled and I got a very bizarre skin rash under my boobs! I have small boobs so wasn't a sweat rash. And like you, I was wiped out! Rang my rheumy nurse and told her I was stopping them.
I'd been on Benapali for five years prior to trying this one and had no side effects but they'd stopped working. About to start my third biologic as soon as it arrives.
Don't worry about telling your rheumatologist that you need to try another - there are quite a few around so they'll offer you another.
Really hope you get your sodium levels sorted out soon and just hang on in there - you'll get the right one to suit you. Take care xx
Hi there, I too have developed a weird rash under my boobs and was wondering which biologic you were on and did it go away by itself or did you need to visit your gp. Did it even go after you stopped that biologic. Thanks xx
Yes very similar issues unfortunately. I was hoping it would be OK, but had a hellish time with it. I felt awful, and was sleeping All time. Also felt like hot pokers were being shoved in my ears. All happened during lockdown and was impossible to see anyone. Just agreed over phone to stop it. Took a few weeks to recover somewhat.
Adalimumab, it had no effect on me, I administered it for six months without any reaction (good or bad) The only biologic (the second one administered to me) is olumiant (baricitinib). Only with this one did my pain subside, after about a month of administration, as side effects, I sometimes have bruises and rarely headaches; along with cortisone at a lower dose than usual, it started to give results. It is clear that you have complications and it should be stopped, I think🤔 May God enlighten the doctors for you, health🙏
Thanks for your comments. Decided to see how I go with it; after the initial few days of side effects 5 days later my sodium levels are back to normal. Apart from a chesty cough all other side effects subsided within a week. The surprise was the CRP had come down from 57 on 27/4 to 8 on 2/5 and I could feel the difference together with loads of energy. I shall monitor everything and my Rheumatology team are quite good getting back to me over any concerns.
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