Abatacept

[Lorraine2460]

Hi there

I was on Tocilizumab, weekly injections. The drug worked very quickly for me which was great, but it suppressed my immune system too much. I’m now trying a fortnightly injection but it looks as though my immune system is on the way to another “too low” and so far anyway, fortnightly isn’t touching the sides with managing my RA.

Abatacept is the next one in the pipeline for me to try and I wondered what experiences you might have had with this drug? How effective is it and what’s your general opinion.

Thanks for your time.

Lorraine x

[medway-lady]

In my case with the thought were all different it gave me eczema and really just didn't work that well. I got special approval to go back to Etanercept which works far better for me with few and they were fleeting side effects. The Abatercept just wasn't that great at all. And because of the skin problems the emolument prescribed to help caused me to slip in the shower, break my leg and ankle. So after it was stopped the itchy painful rash did go but it wasn't good. GP diagnosed it so I didn't imagine the connection.

[Lorraine2460 in reply to medway-lady]

Thanks very much for your response and really good to hear that you’ve got a medication that works well for you. I’m hoping that Tocilizumab will work out for me. 🤞

[Tkat10]

I did not get the best responses from toculizamab have been there and got the t shirt over the last 25+ years with ra and abatecept is working well for me. Nothing is perfect. The best treatments that have worked for me came with awful side effects over time so had to stop. It is a balancing act, good response with quality of life.

[Leics]

I started abatacept about 9 months ago and at first things got a hell of a lot worse before they started to improve. I’m better than I was 9 months ago but in my case it’s not the all singing and dancing one for me but I’m glad to have a bit of improvement. I saw my rheumy yesterday and he’s added low dose leflunamide to give it some help as I can’t take mtx so we will see. I’m severely immune suppressed and as far as I know it hasn’t affected my hypogamma too much 🤞good luck with abatacept hope it works out for you. I’ve only had 1 infection in 9 months too so that’s good.

[Angels54]

Hi , I was on Abatacept and found it very good with any problems 👍

[rawillbebeaten]

Hi Lorraine, I've been on Abatacept (Orencia) since April 2024. It's worked OK but not as well as others. I had to stop these due to side effects, and now have had to pause Abatacept due to skin infection on my hands/nail beds. RA and the effects that drugs have is such an individual thing - it's why it's so difficult to manage long term. No drug seems to work for ever for anyone. Go in expecting it to work, a positive mindset takes you a long way, but be alert for side effects and report them straight away. Wishing you all the best. Here's hoping it's the perfect solution for you and works for years and years. Michele