New to biologics - side effects: hi, I’ve just... - NRAS

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New to biologics - side effects

Sapphire1701 profile image
12 Replies

hi,

I’ve just started on adalimumab (hymiriz 40mg). Had my second injection yesterday. So first two weeks.

First dose had no side effects, and felt huge improvement in my RA chronic knee pain (which I’d posted about previously) within 24 hours. Felt miraculous.. was so happy..

tho had my second dose yesterday lunchtime and bg early evening I felt terrible. Couldn’t eat, v dizzy and nauseous and a bit like I felt on MTX, so the fatigue. This morning I still feel terrible. Been crying all morning, have strange taste in my mouth and feelings of a cold, and very fatigued.

Are these side effects normal and do they ease over time? The relief in pain has been huge, but I had to stop MTX due to bad side effects (similar to these) and so now feeling hugely anxious.

I know early days, and perhaps today just an off day. I just can’t stop crying (MTX affected me this way).

Hearing others experiences if any would be reassuring.

Thank you

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12 Replies
medway-lady profile image
medway-lady

Abatercept did that to me not tears but very sick but it only lasted a few days.

Amnesiac3637 profile image
Amnesiac3637

Poor you, how miserable. It may be a side effect but there are a whole load of nasty bugs about which can cause all sorts of similar symptoms and it may be that yours are nothing to do with your medication.

If they are then you probably need to ride them out as your body hasn’t had very long to get used to the new drug but if you go on feeling like this for more than a few days then I’d contact your GP just in case you’re cooking up something else.

Whatever, do hope you feel much better soon and try not to get too stressed as it def doesn’t help your RA. It’s all fixable!

seronegativeRa profile image
seronegativeRa

I had to stop methotrexate due to horrendous side effects.

For me adalimumab (Amegevita 40mg ), has been a godsend. My first injection I felt off, I was dizzy, felt a little ‘high’, kept zoning out, had a metallic taste in my mouth, felt really hot and temp went up slightly. Nurse advised me to go have a nap. Like you I felt like the energiser bunny the next day. I now take my injection in the evening, an hour or so before bed, then get in bed and don’t really feel any of the side effects, bar a bit of dizziness (but this was after missing 3 doses due to a chest infection). I have a friend at work who bizzarly enough also has an inflammatory arthritis condition. He was put on humera, probs when it was first released, about 18 years ago and he takes his first thing in the morning and no side effects. He loves it and for him has been a total lifesaver too.

Zip1 profile image
Zip1

hi

I had a bad reaction on my first dose, felt drunk and dizzy and sick, it happened only once then no problems only huge benifits…. I hope you get on alright with it!

Colaba profile image
Colaba

I moan about a lot of stuff. Mostly lack of meaningful professional contact.

However, despite great sympathy, all I can really tell you is that Metotrexate seems to work very well for me. I too have knee pain but that is untreated, and likely to remain so, osteoarthritis.

As for Methotrexate, it really seems to work for me. I suffer from much diminished strength since before RA, but have had relatively few bad episodes of severe or enduring pain since I had to accept the disease. Most of the time I have little persistent pain, and might, had I not been diagnosed otherwise, might have reluctantly accepted that I had suddenly dropped into 'old age'. Indeed I am old, but apart from considerable difficulty with walking (untreated knees) quite active.

I don't think there is a guarantee that Methotrexate will always work. The medical folk seem to think it does for me. I suppose I agree - though I resent the illness.

You have my sympathy, and I really wish I could have offered more positive help. Keep trying, I became surprised that I have seemed not to deteriorate much - apart from the knees.

Best regards

BillyJayDuncs profile image
BillyJayDuncs

I started on Adalimumab just before Christmas and likewise the result was instant, in terms of ease of movement, swelling going down, less pain. I haven't had any issues with side effects (apart from the injections being very stingy). It has made such an amazing difference to my daily quality of life. With Methotrexate (which I have been on for many years), I always feel horrendous the day after, even with the folic acid, using metoject, taking it before bed, staying really hydrated etc. Hopefully, like others have said the ill effects were a one off and related to something else and you will be able to feel all the benefits of it going forwards too 🤞🤞🤞

Angels54 profile image
Angels54

Hi , I would advise you speak to the nurse in case your body is rejecting it , I had infusion and felt like that , wasn’t for me , get advice 👍

WilfDog profile image
WilfDog

I would monitor it and see if you continue to feel like this after each injection. I remember having adalimumab (Amegevita) and each time I took the injection, very shortly afterwards, I'd start with a sore throat and felt unwell, which went on for some time. It was clearly the adalimumab as it repeated each time.

Hope you feel better soon and get to the bottom of it. Obviously, if you stay very unwell it might be better to ring your rheumatologist or RA nurse.

Good luck x

Sapphire1701 profile image
Sapphire1701 in reply to WilfDog

Thank you wilfdog. I have actually just contacted nurse as I’m still feeling really off.. v disorientated. I def didn’t feel this pre the new medication. So I will wait their reply..

so frustrating as my pain has improved hugely, but struggling to function as I feel so off.

Thank you s

WilfDog profile image
WilfDog

It's such a difficult balance sometimes to get the medication right as well as keep us feeling well and with it. If you feel like that, then speaking to the rheumy nurse is important.

Don't be too despondent. This is a blip in the road. There are many biologics to choose from and sometimes its a trial and error scenario before you find the right one.

I do hope you improve soon and find a solution x

Sapphire1701 profile image
Sapphire1701 in reply to WilfDog

Thank you, and yes I know there’s more to try, just after failing on all the DMARDS and trying to cope with the constant unpredictability, whilst working and raising my daughter.. I just want (need) to function. The last 18 months have been so tough. I’m just exhausted by it all x

WilfDog profile image
WilfDog

I totally get where you are coming from and understand how you feel. It's really difficult trying to navigate all those things, and frustrating when you're unable to find the right medication to stabilise your disease. It's exhausting as you say.

Have you heard back from the rheumy nurse? Keep on top of them if you haven't. You often have to push these days, as I'm sure you know, to get what you want.

Loads of luck x

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