Another plea for abatacept experience

Hi, I have written on this subject before, but I am sending out one last request before making up my mind. I have very long term JCA ( 50years) and have had many replacement and revision ops on knees and and hips, in last 20 years. I had always maintained my RA with NSAIDs with the occasional cortisone jab, but in the last four years, I have tried embrel, leflunomide, toxillizumab and now abatacept. It has not been a very happy experience, and after trying to deal with abatacept for the last six months, I am now in a mess, not knowing what to do. Has anyone had a similar experience with biologics and long term grinding RA. I would be so happy to here of any stories, so I can go next week to my consultant with a clear idea of what to do.

Jenny ( chubby)

6 Replies

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  • Jenny i wish i could help you,but i know nothing on this subject. I am sending cyber hugs instead. xxxxx

  • Thanks Sylvi, I am sending hugs to you too, sounds as if you have had quite a night, actually, the recliner sounds good. I remember now, I slept on a bed downstairs for about 3 months, so believe me, you are doing well, even if it doesn't feel like it. Take lots of care, is the sun out in your area? It ended up a beautiful afternoon yesterday here.

    Jennyxxxxx

  • Jenny it is beautiful here this morning and i feel great despite the pain. I have walked round our close with hubby with me. I'm not yet ready to do it on my own. My pinkies wanted to join in this morning blasted ra,but it won't stop enjoying this nice daqy we have been blessed with. Hope its lovely where you are. I am just outside coventry in a little village called Bulkington. love sylvi.xxx

  • Your place sounds idyllic Sylvi, I'm so glad you feel better today, Mr Sun certainly helps, I am actually going to do a bit of planting today, well a few pots that is. I live in Bracknell, Berkshire., but I am blessed with a very RA friendly garden. I visited Coventry many years ago as a teenager, and the countryside around there is beautiful. Enjoy the sun. Jennyxxxx

  • Little_Em is on Abaracept, and she's had RA since she was 4 too (she's now 19). So do a search for her blogs. And have you called the NRAS helpline? They might be able to advise too. Good luck, sounds as if you've had a rough time so hope you get some relief. Polly

  • Thanks Polly, I have had some really good response, but it's now getting harder to find the old style rheumatoids. We are a diminishing breed!

    Although I moan about the new drugs, how I wish they had been around when I was 10. However, I have had some really good, teenage and twenties, so I count myself lucky in a way. Thank you very much for you kind message.

    Jennyxxxx

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