Abatacept

[Jillyanne]

Good morning, I have been on Rituximab for a number of years , but having a really bad side effects now , saw Rhuemy a few weeks ago and she said that I might be switched to Abatacept .

She also said about Tocilizumab but that has side effects of shingles aswell, so that’s a big NO

How do you have this, by injection or infusion and what type of side effects would I expect , the only side effect I have with Rituximab is ongoing shingles which has become quite bad , which is why I cannot continue

Many thanks

[Lolabridge]

Hi Jillyanne.

I was on Rituximab (no MTX with it) and had to come off it. I’m now on Tocilizumab and it’s working really well for me. All the RA drugs may have side effects but few of us get them. I’ve had the Shingrix vaccination so hope I’ll avoid Shingles. I suggest you do more research about both drugs before completely ruling out Tocilizumab.

[Jillyanne in reply to Lolabridge]

Ok, thank you , I also have no MTX

Will look into the shingles vaccination aswell

[medway-lady in reply to Lolabridge]

I had the Shingrex vaccine last year and be aware it’s only about 70% effective and the other month I had Shingles again. But the antivirals worked well.

[medway-lady]

I had it and it didn’t work as well as Etanercept plus it caused eczema really badly. The cream for that didn’t work well and I had to use that in the shower. I dropped some by accident and the non slip and extremely expensive shower became an ice ring. I fell over broke my leg and ankle. My husband was at golf and not best pleased to come home mid competition and my thought as I was falling was don’t break the glass, grab the shower bar as we won’t have the money to waste to replace the curved screen set into floor. Anyway I didn’t, to discover had I done so I’d have broken my fall, chances are would have had a few bruises but it would have shattered like a car windscreen not cut my head off. I’d not have fallen onto the raised edge ! The A@E doctor asked me what had happened and I said I don’t know. He thought I’d got Dementia or memory issues and started to talk really slowly. B——r that, I said no it was quick let me think !! My husband thought it was funny until he realised that I could not drive so golf was off the next day etc etc. I managed to get changed back to Etanercept and not looked back. It isn’t perfect but has no nasty side effects. Abatercept is delivered by a NASA designed syringe and made me sick for a few days worked for about 4 of 7 and as said @bove really hurt my skin. It was painful and horrid to look at, both arms and left leg all over in huge red scaly patches. But of course it’s gone now a welcome trade off for a few minor symptoms. I hope it works for you though as it as painless to inject.

[Jillyanne in reply to medway-lady]

Oh, you poor thing

[Fra22-57]

I haven’t had any side effects at all.This is my 4th biologic and only one that started to work for me.I inject by epipen style once a week.very easy to do and you get nurse who shows you first. Hope it works for you

[Jillyanne in reply to Fra22-57]

Thank you 😘

[Biofreak]

Abatacept is working well for me. Best yet in fact and no major side effects. Good luck.

[wilbertjellyfish]

I started it a month ago....sixth biologic....it's painless to inject with the pen thing. Unfortunately I got a different diagnosis after three weeks and now on a different biologic.

Hope it works for you

[Jillyanne in reply to wilbertjellyfish]

I have injected before , Enbrel, so not bothered with that just worried over the side effects

[wilbertjellyfish]

Well it stings less than Enbrel as I was on it too. I had no side effect issues....but I've only had side effects with one of the many meds I've tried so I'm not really the best person to advise.

[Jillyanne in reply to wilbertjellyfish]

Thank you