Advice on Abatacept

[Kate2628]

Can anyone please help! Have to make a decision between 2 drugs, Abatacept or Tocilizumab, not sure what one to choose, does anyone know if Abatacept can be taken without Methotrexate, as l really don’t want to stay on MTX, l know the other one can, thanks for your help Kate .

[Karen12]

Hi Kate,

I took Abatacept without Methotrexate but I think it is meant to work better with it. Unfortunately it did absolutely nothing for me and I’m now on Baricitinib with much better results.

[humorous in reply to Karen12]

Hello Kate

A year after I was diagnosed with RA and after having tried sulfalazine,methotrexate and prednisolone, my consultant said I should try biologics and at the end of the consultation she handed me 3 booklets to take home and read - Benepali,Abatacept and Tocilizumab. At my next appointment I was told I had been prescribed Benepali. After 24 weeks whilst having a scan on my hands and elbows which showed all the inflammation, my consultant said I would be prescribed Abatacept. I queried this decision as the booklets said that Benepali and Abacept targeted the TNF cells whereas Tocilizumab targeted the IL-6 protein. She did not explain her decision and I could not question her further as she said she was running late. I am not medically trained and accepted her decision. After 28 weeks on Abatacept during which time my condition deteriorated I was told by my new consultant I was to be prescribed Tocilizumab. After 12 weeks I really noticed an improvement and I can now use my arms and hands again although It does not seem to have improved my knees - but I live in hope! I still take all the other drugs as I have been told that methotrexate enhances biologics. As other sufferers have said we are all very different and can only trust the decisions made by the Rheumatologists and it is very trial and error. If possible I would ask your consultant which drug would be more suitable for your particular condition and why. Hope all goes well for you in the future.

[Karen12 in reply to humorous]

Thanks I was allocated Abatacept as part of a clinical trial the other I think may have been Etenecept and the allocation was random. It took some convincing it wasn’t working for me but after a scan which proved me right I was eventually changed to Baricitinib which has made a huge difference for me 😀

[allanah]

I'm on tcz , changed my life for the better thankfully

[helixhelix]

I have just stopped TCZ. One issue for me was that it could only be out of the fridge for 8 hours. So even if just going away for a weekend and needing to take onky one syringe I had to cart complete medical cool box.

I prefer a drug with more flexibility! Not sure aure whether Abatacept offers that.

[Karen12 in reply to helixhelix]

6 hours for Abatacept unfortunately.

[JenniferW]

Hi Kate

I take abatacept, apart from a bit of cystitis in the first few weeks, I haven't had any side effects and would happily recommend it, it has been very effective.

I have certainly been under the impression that abatacept works in tandem with methotrexate. I get fed up of the side effects of Methotrexate, but it is very effective with abatacept.

Jennifer

[Neonkittie17]

Hi I’m on Abatacept sub cut and also Mtx 10 mgs sub cut but I was told you can have it without Mtx. Would you be having sub-cut/click pens at home or going to hospital for the infusions? I was switched from Rtx to Abatacept last September as it apparently gives less respiratory infections. After being on such a high level med like Rtx I was worried nothing else could work for my RA, but so far so good. 🙏🏻💗

[Neonkittie17]

4allfamily.com/blogs/rheuma...

[medway-lady]

I use Abatercept with Azathyoprine no issues except it seems to have given me skin problems. But good moisturisers have helped a lot. I like it.

[Biofreak]

I'm on Abatacept without methotrexate and it's been my saviour. I couldn't tolerate methotrexate. Tocilizumab gave me really bad muscle ache that I didn't have before taking it. The thing is with these drugs that they work for some and not others and that's reflected in the responses to your post.

[davannh]

I was on Tocilizumab for 10 years and it was brilliant - then it stopped working. I started Abatercept last July and it has no effect. I have stopped it. Neither were taken with Methotrexate.

[Otto11]

Hi I’m on Abatacept without Methotrexate. Started in March 2020 just before lockdown. It’s working well for me. I was previously on Rituximab but had lung nodules & developed Bronchiectasis so they decided Abatacept would be better for me. I can’t take Methotrexate anymore as it was stopped after I developed Pustular Psoriasis whilst on Humira & Methotrexate prevented it healing. I have however developed a skin condition which they think is drug induced so currently under Dermatologists & starting Photo therapy shortly. The cause could be Abatacept or another med I started at that time. I still want to remain on Abatacept if I can as it’s working well. I was quite pleased to be told what Biologic I was starting as It’s a difficult choice to make. Good luck x

[Julia31 in reply to Otto11]

Hi. Adalimumab gave me pustular psoriasis too, mostly on my feet. I wondered if you still have this or if it has got better since you stopped taking it? I still have it to various degrees a year later and am due to start abatacept soon. I hope you don't mind me asking. Thanks

[Kate2628 in reply to Julia31]

l was not on Adalimumab, just had to decide which drug l wanted to go on, Tocilizumba or Abatacept l chose Abatacept, not sure if lve chosen the right one, just about to restart it, after l injection l had shingles that was 6 weeks ago, l restart it tonight sorry couldn’t be more helpful for you Kate x

[Julia31 in reply to Kate2628]

Thanks Kate. Oh gosh, sorry you got shingles. Hope you are feeling much better now x

[Otto11 in reply to Julia31]

Hi Im sorry you are having this problem too. Why are things never straight forward ? It took 3 years for Rheumy & Dermy to decide what was happening as initially it didn’t present like Psoriasis & was coming & going. It was only my nails but it was nasty. Proff Emery said I must stop Humira as that was the cause & Methotrexate was preventing healing. I had been so good on Humira for 12 years I asked him if I could stay on it & stop Methotrexate instead which is what we did initially & it healed up almost immediately & hasn’t returned since. Humira unfortunately stopped being as effective a few years later in 2017. So far Abatacept has been good for me but have developed a Exema type rash in various places ( nothing like the Psoriasis). It may not be caused by Abatacept but by another medication which I take for Epilepsy. 🤷🏻‍♀️. I hope Abatacept works for you. Good luck x This is what my nails were like

Nails

[Julia31 in reply to Otto11]

Hi Otto11Thank you so much for your reply and the photo. It's interesting that the psoriasis cleared up as soon as you stopped the methotrexate and you were able to stay on humira and I'm so glad for you that it's not returned. Sorry the humira stopped working for you. My psoriasis affects the skin on my feet and possibly my nails too but I don't know whether it's a fungal infection on my nails as I've only had one derm appointment last October and waiting for them to call me in for my next one. My consultant took me off adalimumab but I've stayed on leflunamide. I'm glad abatacept is working for you, though the exema must be a bother. Like you say, nothing is straightforward, is it. Wishing you all the best x

[Otto11 in reply to Julia31]

Your welcome. They thought my nails were a fungal infection at first. I hope you get your next appointment soon & some answers too. I’ve just got my appointment through for allergy testing in a few weeks so maybe that will flag something. Anyway I wish you all the best too x

[Julia31 in reply to Otto11]

Thank you and good luck with the allergy tests x

[MerielPB]

I was given the same choice & chose Abatacept - I think it was because Tocilizumab was a monthly infusion only at the time & I didn't want the aggro.

I have been pretty stable on Abatacept, so would recommend it. I hinted at stopping mtx to my rheumy, as I've never been convinced that it does anything. Her response was that it prevents damage, although my hands & feet would beg to differ! I would imagine you can take any of the biologics without mtx but I think it's a question for your rheumy.

[DaphRA]

I was on Abatacept for two years, taken with Leflunomide. I had previously been on Symponi for about two years with Methotrexate. I was taken off both as Methotrexate was causing side-effects and Symponi (my first biologic) was not effective. Abatacept worked for a while in my case, and I had no side-effects. However after two years Abatacept with Leflunomide wasn't working so well. Leflunomide could be worth considering as a DMARD in place of Methotrexate, if you are offered it. I find it has fewer unpleasant side effects. I'm taking Leflunomide on its own now, along with infrequent i.m. steroid injections.

[DaphRA]

Sorry, in the last post I meant Simponi, otherwise know as Golimumab!

[Kate2628 in reply to DaphRA]

just like to say thanks to everyone who replied to me , big decision tomorrow still not sure! Joints are all playing up been like it for quite a while now, maybe l can get a steroid injection to tide me over , once again thanks for your help Kate x