ABATACEPT flares

[LillyBeagle]

'Morning to you but not a good one for me. I started on ABATACEPT a fortnight ago with first infusion, after being on Tocilizamub for 9yrs. I already had flare up after having no biologics for 6wks (because of the change. This last fortnight I had painful flares in different joints almost everyday. Yesterday (Monday) was my 2nd Aba infusion. I woke at 2am this morning, still with flare up pain, but I felt really poorly. A very muzzy head and felt extremely nauseous. I wasn't sick but the feeling really scared me. I have one more infusion in 2wks time before I am suppose to go onto the home delivery of pens.Has anyone experienced this when first starting ABATACEPT and how long before it takes effect to help with my pain. xx

[Madmusiclover]

Can’t help with flare answer but I am due to start this and was told up to 6 months for it to work.

[LillyBeagle in reply to Madmusiclover]

Oh wow, let's hope not. When I first went onto Tociliazamub,(2015) it was on my 2nd infusion.. it started working. Hope you get on ok.

[medway-lady]

Yes it made me feel a lot worse before it started to work. I could not cut up food! sick etc but it did go. It's not really a flare though more like its getting into the affected areas?

[LillyBeagle in reply to medway-lady]

Thank you, but how long before you felt the benefit. (I'm in Medway too). xx

[medway-lady]

About 3 weeks but it didn't work that well for me sadly it caused drug induced eczema which was dreadful so it had to be stopped after about a year. I got permission to go back to Etanercept but now that isn't working well. I don't give up easily but my skin was so painful and had to be covered up etc. I hope it works for you as it's only the second medication in over 30 years that hasn't been either good or caused horrid side effects. I've an appointment in November so nurse so will discuss Etanercept then. It's not it doesn't work more like it does for about 5 days. I think we are so lucky as Medways RA service is still very good. Have you been to a local meeting in Third Avenue, Gillingham?

[LillyBeagle in reply to medway-lady]

Thank you and hope you get sorted soon. Me and my husband (he also has RA) used to go the the meetings when they were at the hospital Social Club but haven't been to Third Avenue. I didn't realise they were still going.

[medway-lady in reply to LillyBeagle]

Yes I don't go to many and try to avoid winning the raffle lol but still going.xx

[Neonkittie17]

I’m on the pens and not had infusions so haven’t had that experience, but as it’s a bigger dose of med in the infusion to last a month, would think why the side effects, but let your rheumy nurse know these. Hopefully all will settle once you’re on the pens.

[LillyBeagle in reply to Neonkittie17]

Thank you Neonkittie17. Hearing from members on this site of the different things they experience is reassuring knowing that what is happening to me is also being experienced by others xx

[Neonkittie17 in reply to LillyBeagle]

Hi LillyB, forgot to say that I can’t say how long it took for Abatacept pens to work for me as I was still benefitting from previous Rituximab, and I waited 18 months to start Abat as my bloods were not showing RA disease activity as prior Rtx was still effective, so no hurry to start another med. So I didn’t have a flare or painful transition time waiting for Abat to work as it just carried on doing the good work Rtx had done for my RA disease activity. (Rtx did too much damage for my immune and resultant side effects, which was why I was put on Abatacept.) xx

[LillyBeagle in reply to Neonkittie17]

Thank you your kind words and for thinking of me. I'll just have to be patient and hope it kicks in sooner rather than later💖I've had no instructions yet on using the pens. So don't know if they're be once a week or once a fortnight. Do you mind saying what your programme is?

[Neonkittie17 in reply to LillyBeagle]

I have been using the Abatacept pens since August 2022, exception this summer when I had to switch to syringes due to the pen shortage. Hopefully I resume pens in my early November delivery. They are weekly for me and for most people. Painless needle and very. very easy to use. 🩷

[LillyBeagle in reply to Neonkittie17]

Much appreciated, thank you xx

[Neonkittie17 in reply to LillyBeagle]

🩷Hang in there 🩷 xx

[LillyBeagle in reply to Neonkittie17]

I have rung Rheumy yesterday but still waiting for a reply

[Neonkittie17 in reply to LillyBeagle]

Hope they get back soon to you. 🩷

[nanny_bee71]

I started Abatacept infusions in August while waiting for clickpens to come back into distribution. I had 3 fortnightly and one monthly last week. Pens are now back which I will start one month from last infusion. I have experienced leg pain and hand/wrist pain which felt like a flare. Rheumy nurse said it was a side effect which will ease when my body gets used to the new med- told to be patient as it can take up to 6 months to start working properly. Patience is not something I'm good at but will let things settle hopefully soon.

[LillyBeagle in reply to nanny_bee71]

My pens are on ordered and being delivered next week but I have one more fortnightly infusion to go and then not sure when I start the pens. 6 maths to work sounds a long time and not sure I will last that long being in pain. I'm not good being in pain. But thanks for your reply.

[LillyBeagle in reply to nanny_bee71]

Some one else said my pain was side effects and not flares. I can just tolerate the in my fingers, wrists, arms and shoulders, but it's the pain in my right ankle that is the worst. I need to be on my feet some of the time but ankle throbs and pain then more prominent. But thanks for your chat. This chat line really helps as different meds affect people in different ways and like one person who replied said we are all different. Thanks

[Neonkittie17 in reply to nanny_bee71]

I wish I could speed up all the waiting for you as it’s difficult indeed to wait to feel better and be in pain/discomfort. Some of the biologics don’t work as fast as others and when you’re told so it doesn’t help, but it’s true. My rheumy team always tell patients it is a case of waiting the minimum of 3 months usually to see if any improvements. If you have some reaction or averse effect then that’s different. They meed to know asap.

I recall in your first message that you had no RA biologic for 6 weeks before starting Abatacept, so that alone allows uncontrolled RA to cause the pain and restrictions. 😥 Hopefully once you’re on the weekly sub cut clickpens you will settle and they’ll start to work. I do hope so. I was told by the rheumy it’s 8-12 weeks before you’ll feel significant improvement but as mentioned, I still was feeling the benefits of previous Rtx so can’t tell you exactly when mine was working as such. I was also told you can feel more improvement from 3-6 months, so maybe that’s the info/timeline you’ve been told re 6 months, as at 3 months there is still room for more improvement. 🙏🙏🙏

[Tkat10]

I started on abatacept initially infusions but they gave me awful headaches so stopped. Then a couple of years later started on the weekly injections and have to say much better response than I ever had from tocillizamab. No sickness or nausea thankfully and I had a response in much quicker, about 3 months max. See how you go with the side effects and response we are all different.

[LillyBeagle in reply to Tkat10]

Thank you, good to know the pens work for you

[Leics]

When I started on abatacept (pens) I didn’t think I was going to be able to tough it out with the pain I was in. I was already in a mess as I hadn’t had any meds for six months but abatacept certainly ramped it up 100%. After about four weekly injections the pain started to diminish and slowly slowly I turned a corner. Unfortunately for me I got covid so had to stop and now have a chest infection so off meds again. I’m still less than 6 months into treatment but still keeping everything crossed this will be my saviour. I hope your pain subsides as mine did and you feel better soon.

[Evie3]

poor you….as if the illness itself isn’t enough to contend with😵‍💫

[Otto11]

I started Abatacept in 2020. I don’t remember having any issues at first. I did develop Discoid Excema though last year. They asked if I wanted to stop injecting but I didn’t & after about 6 months it just vanished. It’s working well for me. Do let your Rheumy team know so they can advise you. Take care.

[LillyBeagle in reply to Otto11]

I have rung Rheumy team but they haven't got back to me yet.

[Tizi]

I was on Abatacept for about 2years ,the auto injections , it was brilliant but due to the pens being unavailable I had to have infusions ,the first infusion I had made me really ill ,pain like I hadn't had in a long time ,I'm now back on the pens but it's not working like before and I seem to be in a constant flare .

[MerielPB]

I have been on abatacept since 2013, and whilst I don't think any of these drugs make you completely fine, it has worked well for me. You have been off treatment for a while, so you need to give it a chance to work. Regarding your current symptoms, I think there's a bug going around at the moment because I have had a headache & nausea the last couple of days. So has my husband, who perfectly well & not on abatacept.

[LillyBeagle]

I do agree with you that I have to give it a chance but being in pain makes it difficult but I'm wishing it to work. So keeping my fingers crossed. Thanks for your comments xx