Abatacept week 5 feeling awful in a flare

[Alicepirate]

So Ive done my 5th abatacept inject sunday, jab making me really really tired and some nausea and stomach pains but not unbearable but the last 3 week I am losing range of movement especially in my wrist movement is painful and resticted now i can't push on my hands to get up for example, that 90" wrist angle has now gone, I have costochondritis, hands and hips painful and knee very large and swollen so stuck indoors ALOT .

Yep I have contacted rheumy they said(which I understand) I need to just wait it out it's no good stopping an starting stuff . I can have steroids too if I want some but then I wouldn't know if injections work .

my CRP is 14 higher than before starting meds although I know it is early days but just feeling down really, sorry for moan . As feel awful after injection with the side effects but then RA is getting worse too.

Any cheery stories of abatacept please ? 😬😬😬🥰

[medway-lady]

Yes I felt similar for a couple of weeks but just be patient it does go and work well.

[Neonkittie17]

Hi-Alice, Apols for the typing. Error between my phone and this message board. I’m-still-quite-recent-to-starting-Abatacept-as-I-started-the-click-pen-in-September-and-had-to-stop-for-6-weeks-for-covid-vaccine-and-flu-vaccines(delay-also-in-available-appointments)-so-I-had-a-start-stop-situation.I-also believe-Rtx-was/is-still-working-for-me-from-the-last-infusion in April 2021, so-I-never-went-downhill as such re RA symptoms. Since Abatacept I-can-actually-close-my-right-hand/make-a-fist-for-the-first-time-in-27-years-so-who-knows? Can-cross-my-left-fingers-too. I’ve-had-to-pause-Abatacept-again for-my-booster(I’m-behind-on-those)and-paused-2-weeks-ago-thinking-I’d get-in-on-the-Saturday-then-a-footie-match-meant-the-adjoining-vaccine-centre-was-closed-for-the-weekend-so-I’m conscious-I’ll-be-off-Abatacept-for-3/4-weeks-again.😑

I’ve-been-told-by-my-rheumy-you-need-a-good-six-months-on-it-to-see-if-it’s-worked-but-obviously-if-people-get side-effects-which-aren’t-tolerable-the-rheumy-should-be-informed/involved. I-understand-totally-re-you-not wanting-to-confuse-matters-by-having-steroids-and-not-being-able-to-distinguish-if-they’re-masking-if-Abatacept-is-working.

I’m-sorry-to-hear-you-feel-sick-after-the-injection. I-do-mine-10pm-and-it-hasn’t-made-me-wake-up-in-in-the-night-feeling/sick. Would-an-anti sickness-med/help? ... but it’s-another-thing-to-take!I-can’t-comment-on-tiredness-as-I’m always/tired-due-to-hypogamma(low-Ig’s).I-hope-these-issues/smooth/out/and-Abatacept/starts-to-improve-you-soon.🙏🏻

[medway-lady in reply to Neonkittie17]

ha ha with the typing ---- !! it's interesting as I was specially told to take my RA meds as had a flare after the first vaccine and ended up in A&E unable to move.So since then all 6 I've taken it along with the Azathyoprine. My Nephrologist said they tell all transplant people to continue with meds as well. Such a muddle isn't it ?

[Neonkittie17 in reply to medway-lady]

The-typing-sadly-isn’t-amusing-me.Takes far too much time up! If-not for-the-hyphenating-it-you’d-not-be-able-to-read-it-without-squinting. As-no-one-from-Admin--has-got-back-to-me-I very-no-idea-why!🤷‍♀️

I’m-strictly-instructed-to-pause-Abatacept one-week-before-the-vaccines-and-two-after-given-what-happened-to-me/when-on-Rtx.They-won’t-take-chances.x

[medway-lady in reply to Neonkittie17]

Have you done a virus check, it might be you've got a bug or even get the keyboard cleaned as it could be a crumb if your keyboard is like mine . lol I'm sure my keyboard on the laptop could grow spuds and my son regularly moans and cleans it for me. But of course if its only happening on this website it must be so annoying. I got a bug on Facebook despite security and my son removed in and reloaded could that help on HU. That bug took out words so frustrating and I thought it was me but it was one of those things my son said. I hope you get it sorted - xxxxxx-xxx

[Neonkittie17 in reply to medway-lady]

Thank you Medway 💗 MacBookPro-laptop-squeaky-clean-and-so-is-iphone! I-haven’t-seen-a virus notice.🤷‍♀️Wishbone-had-something-similar-for-months-last year with-his-laptop-doing-capitals-and-underlining-for-no-reason-he-could-think-of-so-that-was-weird-too. I-saw-someone-on-a-house-tidy-project-using-a-plastic-putty-on-the-computer keyboards.I-dont-eat-near-mine-so-no-biccies-in-it!😜How-are-you-at-the-mo?I’ve-seen-you-say-recently-you’re-steady-on-Abatacept-at-the-mo.Hope-that-continues. xxxx

[medway-lady in reply to Neonkittie17]

I'm fine and no UTI's for a while so the Abatercept seems a lot better in not making that worse. Its such a trade off isn't it ?. My MacBook Air is very old now and needs replacing fairly soon. Now that is a thought do you have a Geek Apple store near you as they'll do a check on your problem just in case its something wrong they can fix. I get cross with my son as he does things on the computer so quick I can't follow him and I swear sometimes I don't even think he knows either. My husband told your friend he was waiting for our granddaughter to come over to sort his iPad out and she's 3 ! lol. She wanted to watch Peppa Pig the other week and he said to her that he " wasn't sure where to find the programme' and she said " I show you grandad ". I hope you get the problem sorted soon, is it the same for upper and lower case and punctuation ? A blooming nuisance really for you. xx

[Neonkittie17 in reply to medway-lady]

Don’t fancy venturing into the Curry’s/Know-How places etc-at-the-mo-as-always-so-crowded-but-i-could-phone-the-Apple-helpline.It‘s-only-on-here-where-the-typing-goes-bonkers.Kids-are-so-savvy-re-technology!😁Yes-same-for-LC-or-UC.

I-am-glad-you’re-are-stable-on-Abatacept,and-hopefully-we-will-both-stay-steady-on-it.xx

[KittyJ]

whilst you’re waiting for meds to start working your RA can deteriorate as there’s nothing controlling it yet. Your rheumy is right in that you have to give it a chance to work, it won’t be just a few weeks I’m afraid and hopefully any side effects will diminish with time too ( mine did) look after yourself and rest when you need to. I assume you have pain meds you can take to help. 🤞🏻 you’ll be back here soon telling us how great the meds are working.

[Runrig01]

I’m not on Abatacept, but Enbrel. However much as I understand your caution re steroids, if you’re really struggling they will give you relief. You will know when you stop, if the injections are starting to kick in, as they generally only give you a few weeks of steroids, otherwise you need to taper slowly off them, and pain generally returns quickly on stopping steroids. They would give you some quality of life in the meantime. Also any med that gives me nausea I take at night, and sleep through the worst of it. It may also be worth speaking to your gp re an antiemetic to take whilst your body adjusts to the meds. Hope you get relief soon 🤗

[Neonkittie17 in reply to Runrig01]

I-always-do-the same-re-taking-my-RA- meds-at-night.x

[smilelines]

just about the steroids I had a cortisone shot in my big toe joint. I think that little bit in my toe spread everywhere because I felt great for over a week. Maybe it was a coincidence but maybe not.

[Otto11]

I’ve been on Abatacept for 3 years now & it’s working well so far. I can’t remember how long it took to kick in unfortunately but I had had half dose Rituximab only 4 months earlier so guess that was still in my system. I’ve currently got an all over body disc shaped rash the biopsy showed it’s drug induced so hoping it’s not the Abatacept causing it. They are looking at 3 different meds I’ve started in past 3 years. Otherwise it’s doing it’s job x

[Intheend]

I have also done my 5th Abatacept injection this week, and like yourself am experiencing tummy pain ( which I am hoping will pass as my body gets accustomed to the new drug) and an overall drug increase in joint pain. I did have a treatment gap of 4 months between stopping Amgevita and starting Abatacept so I am guessing this may be the reason for the flare?

I spoke to the Rheumy Nurse and received similar advice to yourself, namely hang in there for now as this drug can take up to 3-6 months to be effective!

She did say that if side effects became too troublesome they would have to consider changing drugs again, but as I am already on my 5th biologic in 5 years I am concerned about running out of options!

Really hope that things settle for you soon and that Abatacept proves as successful for both of us as it has been for others on this forum.

[Rainyda]

I just started Orencia yester day, so it's wait and see for me🤔 Wishing all trying it... the best of luck with it!