Anyone taking those drugs? Abatacept, rituximab, jak ... - NRAS

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Anyone taking those drugs? Abatacept, rituximab, jak inhibitor

virginied profile image
virginied
ā€¢19 Replies

Edit: hospital has now apply funding for me to get JAK inhibitor ( as biologics don't seem to work anymore for me)

Might take a few weeks/months before I start new treatment though šŸ¤žšŸ¤žhopefully JAK will work for me

Hello,I am on tociluzimab and leflunomide but it's not working anymore .( also tried previously humira )

Rhumatolog might switch to 1 of them. Anyone taking them? Are they good or is there 1 to avoid ?

--Abatacept or rituximab or jac inhibitor ( olumiant or rinvoq or filgotinib)

Thanks

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virginied profile image
virginied
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Madmusiclover profile image
Madmusiclover

We are all different. Personally I got on fine with Baricitinib until it stopped working. Others you mention less so but they will have been fine for others. Advantage of a JAK is its tablet form. Easily transported and you can stop/start it quickly.

medway-lady profile image
medway-lady

Itā€™s a difficult question as I tried Abatercept and it didnā€™t work that well and it caused drug induced eczema that was awful. It was stopped and it went but I was glad as allowed to go to back to Etanercept which with AZA is great. The thing is it might be really good for you so itā€™s really best to travel with hope and just wait and see. Iā€™ve no idea why it caused me such skin problems but even the GPs cream didn't stop it and in fact I slipped after I dropped some in the shower, fell and broke my leg and ankle. That may of course be coincidence but I definitely wasnā€™t drunk at 7.30 in the morning. So all in all it was not a good experience but fingers crossed it works for you if you do try it. X

zen4 profile image
zen4

Baracitinib which is s JAK inhibitor has been brilliant for me Not supposed to be given to over 65s but luckily for me I started before they knew that! Have had no side effects except it might have raised my cholesterol a bit although it's hard to tell as I cannot exercise much these days Its true were all different so go with the flow

Ali_H profile image
Ali_H

baricitinib (aka omulant) with MTX is working for me = 15mg MTX weekly and 2mg baricitinib daily. I was on 4mg daily but it was a bit too much and chest infections were creeping in so we reduced it in October and been good since.

All the best

Ali

Vizwiz profile image
Vizwizā€¢ in reply toAli_H

After leflunomide and sulphasalazine stopped working I started rituximab last year. It was meant to be with MTX but having reacted badly to MTX previously and getting a similar reaction to it with Ritux I was allowed to take Lef and Sulphsalazine. That combo has been great for me- approaching a year since ritux infusions and no signs- yet! But as others say people all react differently to the meds. Good luck.

rawillbebeaten profile image
rawillbebeaten

Treatments are so individual. Enbrel and Humira worked best for me but after a few years the side effects meant I had to switch. Leflunamoid and Rituximab didn't really work. I thought that Abatacept was working, but now I'm not sure. I don't think I have many options left, which is worrying. It was interesting to read the comments on skin issues. I have had a few places come up on my leg, they don't look nice, but aren't bothering me. Maybe something I need to mention to the GP or Rhumatology. See what the experts offer and keep positive. Wishing you all the very best. Michele

MerielPB profile image
MerielPB

I have been on Abatacept since 2013/4. It has always worked well for me. I refused rituximab because of one of the listed side effects but Iā€™ve seen posts on here from people who seem very happy on it.

Fra22-57 profile image
Fra22-57

I am on Abatacept infusion.It has been the only one to work for me as I tried 3 others. Wish you well

virginied profile image
virginied

Thank you all for your advice. I will see my rhumatolog tomorrow to discuss my new medication šŸ¤ž

Birmans profile image
Birmans

Hi, I'm on Rituximab for inflammatory arthritis and it's working pretty well. The down side is that it takes 6 hours for infusions x 2 at first, however they now do it over two hours as I had no interactions. I'm always left feeling very tired afterwards and a little chesty but this wears off. Hope this helps.

Otto11 profile image
Otto11

Iā€™m on Abatacept since 2020. I was supposed to start Baracitanib & had had the assessment with the nurse when a scan showed Bronchiectasis so that plan was scrapped & Abatacept was recommended. I have been ok on it but did develop discoid Excema but it settled on its own. Itā€™s my 4th Biologic. Adalimumab ( Humira) worked best for me. I was on that for 12 years but developed pustular psoriasis of my nails so to stop it. Everyone is different so I was rather pleased the decision was made for me. A tablet is easier to take I guess but then you would need to be sure you had no absorption issues I guess.

J1707- profile image
J1707-

Iā€™m sero-negative and find the Jaks work better for me with no side effects . Baricitnib was my first Jak it worked quickly but the covid jab stopped it working. Iā€™m on Rinvoq now again worked instantly no side effects. Do your research. If you donā€™t have RA positive factor then biologics tend not to work. I tried all those biologics and had big side effects or they didnā€™t work. My new rheumatologist explained all this too me . I did query the rituximab with a locom as I had read it didnā€™t work for Sero - negative Ra but was poo pooed .

Good luck with what ever you choose.

Doodlereggie profile image
Doodlereggieā€¢ in reply toJ1707-

That is so interesting what you said about sero negative,which I have always been.i did not know that,and biologics did not work for me,but JAK does.That is the first time I have heard that,and it explains a lot!!xx

AgedCrone profile image
AgedCrone

Your question is just not possible to answer saying one is better than another. I have taken drugs I would never touch againā€¦.but some people thrive on them.

Each of the drugs you mention is very well thought of by those it suitsā€¦..but you will only find out by speaking to your rheumy teamā€¦ā€¦answering their questions truthfullyā€¦& trying what they recommend.

Make a note about what particularly bothers you about YOUR RAā€¦take your teamā€™s adviceā€¦& get started to hopefully feeling better.

I have been on Rtx for 8 yearsā€¦& would raise the roof if anybody tried to take me off it!

Shresworld profile image
Shresworld

I've been on most for the past eight years taking my 2nd round of Rituxan on Monday and not too soon it starting to wear off at almost 6 months but works great for me I hope you find what works ā˜ŗļø

Doodlereggie profile image
Doodlereggie

hi.my journey since 2001 is prednisolone first,then methotrexate,azathioprine.hydroxychloropine,biologic and now JAK filgotinib!I have to say for me the filgotinib is fantastic.one tablet a day,no side effects that I know of and for the first time in over 20 years not even a paracetamol.How lucky can you get!I am virtually pain free,even though over the years damage has been done to my wrists and hands.The new drugs are amazing,although they are expensive and sometimes you have to prove you need them.So do explore all options offered,and,as I did,ask others on here for their experiences,as they are so knowledgeable,and gave me confidence when I needed it.good luck.x

virginied profile image
virginiedā€¢ in reply toDoodlereggie

Wow that's great news , being pain free is dream comes true šŸ˜Š

Neonkittie17 profile image
Neonkittie17

I finished Rituximab in April 2021 which served me so well for 8 years and gave me brilliant mobility and zero CRP, but it took my igG too low and caused bronchitis issues. Been on Abatacept since August 2022 and itā€™s worked very well too. Had my doubts after being on Rtx which is powerful and so effective, but then so can be Abatacept. People have different stories re their success and failure, so do listen to your rheumy and nurse as well as patient experiences.

Rtx is more convenient as itā€™s done (minimum repeat is 6 monthly) at hospital as an IV/infusion but I used to last from 12 months before repeating it at the hospital and it takes a full day to do everything, but youā€™re only there twice a year usually. Abatacept can be done as an infusion monthly (takes half an hour approx for the infusion go through) or sub cut weekly yourself at home which I have. Painless clickpen, easy to do. I donā€™t know much at all re the JAKs as never had them. x

Lolabridge profile image
Lolabridge

Iā€™ve been on RoActemra (Tocilizumab) for two years and itā€™s worked really well for me. Itā€™s administered by self-injection and I donā€™t have any gut issues. Iā€™ve just switched to a biosimilar version of Tocilizumab called Tyenne and that seems to work just as well.

I hope you can find something that works well for you too.

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