adalimubab: I had my first injections yesterday, felt... - NRAS

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adalimubab

Ella61 profile image
66 Replies

I had my first injections yesterday, felt nauseous after a couple of hours and today feeling very tired. Has anyone else experienced these side effects? Do they pass?

Thank you

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Ella61 profile image
Ella61
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66 Replies
J1707- profile image
J1707-

This drug didn’t suit me . I had lots and f side effects including muscle weakness but many in here it was their wonder drug . I lasted 4 injections. Keep an eye on things and keep a diary . If you’re suffering on a drug then it’s not worth it and in to the next . Hope things settle

Ella61 profile image
Ella61 in reply to J1707-

thank you for your reply, I am considering not doing the second one and ask to add hidroxy instead to MTX.

Boxerlady profile image
Boxerlady in reply to Ella61

I haven't been on that medication but did had some nausea with both Sulphasalzine and Methotrexate which passed after a few doses. I have the "Methotrexate hangover" the day after I inject which is worse some weeks than others. Personally, I would think that it's a bit early to be giving up on a medication as the initial side effects often settle but obviously only you can judge how unpleasant you find them.

AgedCrone profile image
AgedCrone in reply to Boxerlady

I agree..Definitely don’t give up after just one injection……symptoms at this point could be merely apprehension. When I was searching for a new drug I always made sure I gave it at least a month or two…unless of course the side effects were really unacceptable.

Ella61 profile image
Ella61 in reply to AgedCrone

hi, you are right…. I am just scared of spending another 2 days feeling sick🙁

AgedCrone profile image
AgedCrone in reply to Ella61

I do know how you feel…my nightmare drug was Sulphasalazine way back when I was first diagnosed. I knew nothing about RA…& when I was prescribed the horrible stuff my very nice rheumy at the time said give it a try for 3 months…..& Naïvely I did..,being sick every day….for the whole 12 weeks.

Never again…even my rheumy said never feel so bad …”just tell your rheumy nurse….there is always something else.”

So if you really don’t feel any better..,,just say so! As my rheumy said…there is always another drug lurking that will suit you.

Try to keep calm this week & see if you can face jab number 2.Let us know how you get on.

Ella61 profile image
Ella61 in reply to AgedCrone

bless you, that sounds horrific😬

AgedCrone profile image
AgedCrone in reply to Ella61

But it taught me a lesson……have a good try… & if no luck Holler!

I have found if you genuinely make an effort your medical team will know you are a trier & will support you all the way. Hope you get success very soon.

Munro76 profile image
Munro76

Hi Ella,

I've had two injections, got my third one next week. A few weeks ago I could barely walk. My wife had to help dress me every morning. I've now had about two full weeks virtually pain free. No side effects, apart from burning very easily in the sun, and my skin has broken out a bit as well. I still get a bit of nausea sometimes after methotrexate. Maybe see how you go with the next jag. Hope it all works out for you.

Ella61 profile image
Ella61 in reply to Munro76

hi Munro

Thank you for your reply and glad to hear it is working really well for you. It is not just the nausea, it is also the weakness and brain fog, it is bad enough on MTX day, not sure I can have a double dose of it!!

I will speak with the nursing team, it maybe an initial reaction.

Take care 😊

I have been on it for 3 years now. Some nausea at the beginning but no other side effects. Give it a bit longer.

Ella61 profile image
Ella61 in reply to grrrrrrrrrrrrrrrrr

this is encouraging….. thank you

Leics profile image
Leics

I haven’t been on that drug either but I’ve just spent a further 5 months hoping that the nausea will subside with mtx. I’ve come to a point I can no longer live wanting to throw up all the time even with anti nausea tablets. Having said that I would definitely try to have at least 3 injections and then weigh it up. In my case I’ve given it my best shot as mtx stopped working for me in January after covid. Please let us know how you get on and whether it subsides 🤞for you.

Ella61 profile image
Ella61 in reply to Leics

I suffered dreadfully on MTX injections, went back on tablets and was much better, until I had COVID, and down hill since then. What treatment are on now?

Take care and thank you for taking the time to reply.

Leics profile image
Leics in reply to Ella61

unfortunately I’m not on any treatment at the moment seeing rheumy tomorrow so may have a new plan 🤷‍♀️. I can’t tolerate mtx tablets or injections it seems I was only on 7.5 injection. To be honest I don’t know where I go now maybe another JAK but have a very low immune system so limited. I hope your nausea is short lived and your new meds are really good for you.

Ella61 profile image
Ella61 in reply to Leics

thank you Leics, hope you will sort something out tomorrow and best wishes ☺️

Nana246 profile image
Nana246

I was extremely fatigued and flaring when I started Humira. I started to feel much better after the second dose and am great now after 8 doses. If I have a big day I’m more tired at night but usually I’m fine. I didn’t have any nausea. Hoping it helps you 😊

Ella61 profile image
Ella61 in reply to Nana246

thank you Nana for your reply, it is day 3 now and still feeling tired, which is unlike me!! I am up every day at 6 and do 1 hour of keep fit before I start work , today I could not face it😔. Yes, maybe I should give it another go and see how I get on.

Take care😊

juliejswift profile image
juliejswift

my daughter has been on this drug for 5 years and was in remission after a year. I can’t remember her complaining of feeling sick but it was a long time ago. Keep going and give it longer if you can. It’s worked miracles for my daughter aged 15.

Ella61 profile image
Ella61 in reply to juliejswift

hi Julie

Glad to hear your daughter is doing well, it is a shame this drugs don’t work the same for everyone. I have 2 weeks to think about it, in the meantime I will speak to the rheumy team for more advice.

Take care

MJSlide1958 profile image
MJSlide1958 in reply to juliejswift

My daughter was 18 when she first started on Enbrel and was fine for 8 years with Enbrel weekly on its own. But after going to Copenhagen such extreme cold, it was not working properly therefore had to take 15mg weekly MTX tablets to kick start it and now has to stay on it with Enbrel. She was diagnosed at 17 she is now 31 and would like to have a baby in the near future! But she will need to plan this well re meds. Also she has had ovarian dermoid cysts in both ovaries and will be having a second op in the near future. Hopefully her ovaries may recover to allow her to conceive? I wish your daugther well, its not easy being a Mum! Best wishes

Bookworm55 profile image
Bookworm55

l had my first adalimubab jab last Monday. I had a headache and felt sick and tired for a couple of days (Thurs and Friday) but that now seems to have eased. . Brain fog I have all the time anyway.!

However the flare I have had for several weeks has eased considerably - no more shoulder or hand stiffness even in the morning.

I’m therefore definitely going to persist and hope the side effects lessen. This is in complete contrast to the Leflunomide I started on 6 months ago which did nothing for my pain etc - just gave me the unpleasant side effects.

Ella61 profile image
Ella61 in reply to Bookworm55

Hi

Wow, it seems that it has worked really fast for you, if you have already noticed some improvement after the first injection.

Hope it works well for you, thank you for your comments and best wishes.

oldtimer profile image
oldtimer

I'm very likely to feel sick with things as the azathioprine makes me like that. But I'm fine after the adalumimab. But I was so thrilled to have finally wone the battle to get it, that I was on a high! Hope you get on with it better soon.

Ella61 profile image
Ella61 in reply to oldtimer

thank you, hope it continues to work for you.

I have 2 weeks to think about it ….

Akaka profile image
Akaka

I got my first injection on Wednesday and so far no apparent side effects. I still feel tired but it is early days and I was in a massive flare before. My symptoms seem to have eased a little and mornings are not quite so painful. I was told at the hospital that if I didn’t see any improvement after 3 injections it was not likely to be the one for me. I would wait and try a few more injections first, hope the nausea improves, I know how you feel I had it with methotrexate. Good luck

Ella61 profile image
Ella61 in reply to Akaka

thank you Akaka

I guess it is early days, I guess it doesn’t help at present being on steroids too to ease the flare up.

Best wishes

Pucky profile image
Pucky

I took Humira for 1.5 years. It helped me good during that time. I didn't have any serious side effects. Unfortunately, I don't remember the first injection. The only side effect I had was a slight redness around the point of the injection and slight itching for 2 days. Sometimes a little swollen. But otherwise everything was fine. No pain, no swollen joints. And the nail psoriasis started to get better. Unfortunately, my body developed antibodies against Humira and I had to change medication.

Now I have been taking Enbrel for 3 years and I am very satisfied. I hope it stays that way.

If you have any questions, please feel free to contact me.

Ella61 profile image
Ella61 in reply to Pucky

thank you Pucky for your reply, glad to hear you have found the one for you☺️.

david451943 profile image
david451943

Hi Ella61, I have been on Adalimumab for 18 month the only complaint i had was that it took a little while to get into the system ( no nasty side effects though) i say it took about 6/8 week but after that there was no complaints at all, you mention Methotrexate now that was one drug i could not get on with and was taken off that immediately after been rushed in with suspected Sepsis, there was only two departments in the whole of the Hospital that used it, okay in your case maybe one drug does not suit all especially if mixing it with Methotrexate, have a word with your Rhuemo, that might just be the case, but i honestly think that you must give it chance to work and i am sure you will be well pleased with the out come. Best Wishes Dave1943

Ella61 profile image
Ella61 in reply to david451943

hi Dave,

Thank you for your comments, which are encouraging. It is possible that having MTX in my system and also steroids has not helped!!

I will carefully consider what to do next😊

Best wishes

Runrig01 profile image
Runrig01

Due to the high costs and needing funding approval, many Trusts only allow you to try two TNF inhibitors, so I would be tempted to persevere a bit longer, or you may run out of biologic options quickly, as you can’t return to one you’ve had previously. It’s usually fairly easy to find their policy re biologics on google. Often side effects quickly subside, so I’d definitely give it another go, but only you can decide. HopIng it settles quickly for you

Ella61 profile image
Ella61 in reply to Runrig01

yes, I agree, just don’t want to feel unwell for days on end.😟

Blackberrywine profile image
Blackberrywine

It didn't suit me, but I gave it about 6 weeks before flinging on the towel.

Ella61 profile image
Ella61 in reply to Blackberrywine

well done for persevering, may I ask what we’re the issues?

Blackberrywine profile image
Blackberrywine in reply to Ella61

Of course! I had complete exhaustion and one infection after the other. Terrible ear infection and ringing in the ears that's never completely disappeared. Plus no real dent in the arthritic condition. Hope it works well for you...does for some folk.

Ella61 profile image
Ella61 in reply to Blackberrywine

that is what worries me too… the high risk of infections!! You get better one way to suffer another😬

I hope you find the right one, I might ask to stay on MTX and add hidroxy.😊

Girtonian profile image
Girtonian in reply to Blackberrywine

that’s interesting. I had tinnitus when I was on humira and always suspected it was humira which caused it, as it went away one time when I had a holiday in the US and the injection I had with me had warmed up during travel… I wondered if that made it ineffective. The ENT specialist I saw had a student who did a search of all reported side effects but said there was no recorded evidence for tinnitus. I was on humira for about 17 years (I started off in a trial in 2001). It absolutely gave me my life back and also had a terrific mood lifting effect which I very much miss now! I had to come off it when I had cancer. Fortunately for me I’ve found a gluten free diet and avoiding nightshades and cows dairy seems to have put me into remission. I am hypothyroid (Hashimotos- another autoimmune condition) and have had struggles with that, but generally have much to be thankful for. The tinnitus is usually liveable-with, strangely it seems to get louder when my thyroid meds are increased.

Blackberrywine profile image
Blackberrywine in reply to Girtonian

Yes . I think quite a few meds can cause tinnitus. So glad diet has helped you. I also find a keto diet in my case, has helped considerably. No grains or sugar.

Brian1977 profile image
Brian1977

I take my first injection on Wednesday I'm really nervous about it. I've tobstay on 25mg methotrexate too but they make me feel yuck 🤮 I'm praying something helps soon. I hope it works for you too 🤞🤞🤞🤞

Ella61 profile image
Ella61 in reply to Brian1977

hi Brian

Best wishes for Wednesday, hopefully you will not have any issues. Please let me know how you get on . Take care and good luck

Pigsearwawa profile image
Pigsearwawa in reply to Brian1977

Hello Brian, I gave been on Adilumamab for some years but could not get on with MTX so I take Leflumonide instead. It seems to work much better. X

Brian1977 profile image
Brian1977 in reply to Pigsearwawa

I hate the mtx I have to get my bloods done weekly because my alt levels are high I feel yuck all week and have had no appetite for months now I've lost 3 stone since Feb. But that could be to do with the inflammation. I'm just hoping I get some kind of relief when I start the biologics

Ella61 profile image
Ella61 in reply to Brian1977

hope you do, let us know how you get on with it😊

Ella61 profile image
Ella61 in reply to Brian1977

hi Brian, how did you get on with your first injection? You were very nervous, did all go well?

Brian1977 profile image
Brian1977 in reply to Ella61

Hi Ella it took me an hour to pluck up the courage lol but managed to do it but I e felt horrendous since I can barely walk with my feet so swollen and the pain is terrible :( 😞

Ella61 profile image
Ella61 in reply to Brian1977

😟sorry to hear that!! Do you think it is a side effect or RA?

Hope you feel better soon, did you inject same day as MTX? I didn’t,I take MTX in tablets on a Monday and did the injection last Friday as I didn’t want to confuse the side effects.

I have decided not to continue with it, as the side effects were too unpleasant🙁

Brian1977 profile image
Brian1977 in reply to Ella61

I take my mtx on a Monday too the nurse said to leave it a couple of days then take the amgevita. Who knows it will be just my luck that ot doesn't work. I'm starting to think nothing will ever help. The inflammation has spread to my sacroiliac joints now so I'm praying it does help before I get damage to my spine. What have they said is next for you then

Ella61 profile image
Ella61 in reply to Brian1977

I have asked to be back on Hidroxy, I had that combination before and it worked, in fact I was in remission and I was taken off Hidroxy and taking 12.5 MTX, was working well until I had COVID😔, since Tuesday I have given up sugar and dairy , which are not good for inflammation. I am on low dose of steroids until the flare up calms down

Boxerlady profile image
Boxerlady

You've probably tried this but for nausea my go-tos are peppermint and ginger. I also find that eating little and often (even if I don't feel like it and preferably before I feel hungry) helps so I drink peppermint tea ( haven't tried ginger but I presume that it would be good), suck on sugar free Polos (other mints are available!) and nibble on ginger biscuits, toast/crackers and bananas.

Ella61 profile image
Ella61 in reply to Boxerlady

thank you for the tips, I hate ginger !! Only because when I was first diagnosed I used to eat ginger biscuits to reduce the nausea caused by MTX😃

caran profile image
caran

I started on Adalimumab nearly 8 weeks ago having been on Etanacept for 6+ years. So far it isn't working for me and I have been told it may take 3 months. So I'm having a flare up and haven't felt so much stiffness and pain since before I started taking Etanercept. My consultant wanted me to try Adalimumab because I had begun to have more inflammation and it seemed that Etanercept wasn't working so well. I've decided to stick with it for few more weeks as don't like to keep chopping and changing meds. I was told by nurse to do Adalimumab injections just before bedtime because of side effects.

Ella61 profile image
Ella61 in reply to caran

hi Caran

Sorry to hear you are not doing well on it. It so difficult to find something that works without any side effects. Hope you can resolve things soon.

Take care

Zip1 profile image
Zip1

I have been on it for 6 months now, the first dose made me feel horrible, then 2 more with a hangover type headache but since then I have been fine and no flares so on an even keel at last! So saying my rheumy stressed that if it didn’t suit there were other options! I would call and speak to your helpline if you can. I hope things get better for you soon.

Ella61 profile image
Ella61 in reply to Zip1

hi Zip

Glad to hear it is working well for you.

I will contact the team tomorrow for more advise.

Take care

dwsurquhart profile image
dwsurquhart

Watch for side effects. I was on it for a short time and developed donut shaped very hard blisters on my hands. I call them do not shape because the center dropped leaving a ring.

They were very painful.

These came about around the 3 week mark amd lasted for 6 weeks. I stopped the adalimimab and the went away in around 3 weeks.

The nausea is a common side effect to this drug and is not very pleasant.

Hopefully it works for you.

Ella61 profile image
Ella61 in reply to dwsurquhart

hi, 🫢your side effects don’t sound too good!! Hopefully you have found something else that works for you.

hazmatrec profile image
hazmatrec

hello! i hope things settle and become clear for you. and the nausea and fog and weakness wander away! i want to thank you fir asking your question. I'm going for my pre prescribing screening fir adalimumab on Wednesday and feeling a bit nervous. reading so many replies, pros and cons, has been a boost. i hate feeling like i have to prove I'm worthy of health care. thinking about other aspects is an improvement!

thanks to everybody in the conversation!

x cath

Ella61 profile image
Ella61 in reply to hazmatrec

hope even works out well for you 😊

Best wishes

hazmatrec profile image
hazmatrec in reply to Ella61

i feel a bit bad, you've ended up giving good luck to most people here. i hope you've had some reassurance and useful information? I'm usually one to just 'deal with it' myself. i had to screw up courage just to sort out for sure that the monitoring nurses *did* want to know if i was having any effects from the med. they weren't going to start running around in a panic, they want to know, because they're monitoring. i spent the first two weeks sleeping about 75% of the time and no sense of night and day. i kept schtum because i just do but when it got to my 'maybe i should mention it' point, and i had the monitoring appt, i went in and said i feel new and unsure but am i really supposed to ring you if I'm tired? she said, if i feel unwell, ring the gp in the first instance but let the monitors know at some point, but if i think I'm having something that's from the med, ring the monitors first, and they'll help figure next step, even if that's just waiting. but anything that's new or different, to definitely get in touch, with someone.

have you been in touch with the monitoring team? I'm sorry that was so long, but it was a big weight on my mind before i spoke up, and a huge relief to know the action path after. huge.

Ella61 profile image
Ella61 in reply to hazmatrec

hi

Thank you for your message .

I have reported it to the nurses, they have advised to stop and introduce Hydroxy, as I did take it before and it worked.

In the meantime, I have cut out sugar and dairy and any inflammatory food☺️

Let’s see what the next few weeks bring .

hazmatrec profile image
hazmatrec in reply to Ella61

oh, i hope you find ease!

netballnow profile image
netballnow

I started on this April 22nd and felt totally exhausted for 4 to 5 days having to find somewhere to sit when dog walking and thinking I was going to collapse. Blood tests showed sodium levels had plummeted. But within 10 days all pain had gone, I was full of energy and sodium levels were back up. Scared of having the second injection but Rheumy nurse asked me to stick with it. I’m so glad I did as there have been no side effects at all since and I’m back to my old self. Fingers crossed for you that you go the same way.

Ella61 profile image
Ella61 in reply to netballnow

your comments are encouraging, this is how I felt plus the nausea and stomach pain😟

Luludean profile image
Luludean

you have to give it a chance. It may be good .

I gave it 9 months but had to give up.

Ella61 profile image
Ella61 in reply to Luludean

hi , yes I know I should give it a chance, but what if next time is even worse??

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