A change to Abatacept

[LillyBeagle]

I was diagnosed with RA in 2001 and after having started on Sulfasalazine and then onto Methotrexate as my RA got more painful. I am still taking 15mg of Metho, but was introduced to biologics in early 2015. Humeria first but that was unsuccessful and then went onto Tociliazumub.

I have been 9 years on Tociliazumub, which had worked very well for me, but unfortunately .stopped working late last year. I persevered with it until I saw my Rheumy Nurse in early July but had a lot of flare ups during this time and had steroids to help me through the bad times.

I've had the last 5 weeks without any RA drugs to prepare for my start on Abatacept . Being without my biologics has brought on painful swollen flareups in my fingers, wrists and upper arms and have only been able to help this with painkillers.

I am nervous about starting Abatacept on Monday as there is no guarantee its going to work but I am trying to be positive. Has anyone changed from Toci to Abatacept and its been a positive ?outcome

[Neonkittie17]

No, not from Tociliz to Abatacept, but I switched from a very high spec biologic (Rituximab) to Abatacept in Summer 2022. I do hope it works well for you. It doesn’t work instantly but around 6-8 weeks you should start to see some results. Sometimes takes longer though. I wasn’t flaring when I started it so had a smooth transition between Rtx and Abatacept. Good luck and hope it works sooner rather than later. 🩷

[LillyBeagle in reply to Neonkittie17]

Thanks for your kind words xx

[Neonkittie17 in reply to LillyBeagle]

It’s said to be a more gentle biologic in terms of not many patients tend to get as many infection on it (always a few exceptions though) and I hope it suits you very much. xx

[LillyBeagle in reply to Neonkittie17]

Thank you, I'm off tomorrow and really hope it suits me too. Time will tell 💖

[Neonkittie17 in reply to LillyBeagle]

🙏🩷

[Biofreak]

I have been on several biological treatments, Etanercept, Humira, Tocilizumab and finally Abatacept. The first two worked for a while then stopped working. Tocilizumab didn't work at all and caused muscle aches as well. Finally Abatacept has worked a treat and has been the best one yet for me. So I would say you can't lose by trying and it may work for you too. I still take sulphasalazine alongside it. Sounds like you are similar to me looking at your meds history.

[Vonnie69 in reply to Biofreak]

I was on metrex for years and it worked. Got pneumonia and everything changed. Added sulphasalazine at highest doze and methexate at highest dose and still not where I want to be. I am so miserable.

[Biofreak in reply to Vonnie69]

I know how you feel Vonnie. Methotrexate was my first introduction to RA drugs. I know it works for a lot of people but it didn't for me. Not only did it not work but I also had 3 chest infections in a row and it took months to recover. I was taken off methotrexate because the rheumatologist decided it didn't suit me. It was after that I was put on sulphasalazine which did help but not enough and they added Etanercept which was effective for 5 years until it stopped. Maybe a change to a biological treatment instead of the methotrexate might help. I would ask your rheumatology doctor if it's possible because it's clear that methotrexate/ sulphasalazine combo isn't working for you.

[LillyBeagle in reply to Biofreak]

Thanks, that sounds like a really positive response for me. I've taken methotrexate since 2009 and the doses gave varied over the years but 15mg at the present time xx

[Ruffles13]

I head no timoxilubub for 10 years. And like you have gone on to abacept . I find the neee easier to use and have felt no different in myself. Still working . Ok xx good luckxx

[LillyBeagle in reply to Ruffles13]

😄😍

[LillyBeagle in reply to Ruffles13]

😍😄

[Artfanatic]

Hi LillyBeagle I've been on Methotrexate & Abatacept for quite a few years now, not sure how many. I tried Etanercept & Humira until they put me on Abatacept but not Tociliazumub I'm afraid . Abatacept works great for me & I only have to take the epipens fortnightly now. It's the Methotrexate I'm having problems with I'm afraid. I'm only on 7.5mg a week 3 tablets over 3 days but I've already got tummy problems & possible IBS so it's not going too well. I'm going to ask to try injections when I see Rheumy nurse later this month, I hate injections but I'm hoping it my relieve my tummy problems!? Good luck with Abatacept but I'm sure you'll be fine, if I can take it & I'm allergic to a lot of things, I'm sure you can. Sending you hugs 💓

[LillyBeagle in reply to Artfanatic]

Thank you Artfanatic, off to the Infusion Suite in the morning so we will see. But reading your comment gives me positive vibes💕