Baracinitib (Jak) or abatacept for lupus/rheumatoid arthritis?

[Sandy1212]

Hi!

Has anyone used the one of the above to treat their lupus/rheumatoid arthritis? What were your side effects if you had any? Would you recommend it? Do you know the possible long-term issues it may cause?

Or if you have any information on these drugs please let me know!

Thanks!

[RachelD1972]

Hi Sandy, I’ve been on Abatacept for about 6 years via injection. I’ve never had any issues. I have noticed an improvement compared to my previous biologic which was infliximab. I’ve had RA 11 years and Discoid lupus about 2. I’ve not noticed any side effects. The only thing that has changed is my cholesterol is high which I’ve never had a problem with so don’t know if that is just coincidence. No weight issues or changes. I take Abatacept alongside Azathioprine. Hopefully you’ll hear from others soon too x

[Sandy1212 in reply to RachelD1972]

Thanks Rachel! I take azathioprine as well and they were going to keep me on it alongside so it’s great to hear that you have had a mostly positive experience! Really appreciate the post 😊 x

[BeeManShrop]

Hi Sandy My wife has had RA for about 20 years she has been treated with methotrexate for the last 15 years. About 12 months ago (Oct 2019) she started eating less and less until she reached the point where a meal was about the size you would give a small child. She would get very annoyed if I said anything saying "I do not want to even think about food". She lost 5 stones in weight.

Eventually, at the beginning of Feb 2020 she had a massive flare up, extreme pain in all joints even her jaw. She could not get in or out of bed without help but, worse still, she could not stand me touching her hands or arms to help her.

The specialist RA nurse thought the methotrexate had stopped working and agreed to try Baricitinib. It took 6 very painful weeks for it to be delivered from a central pharmacy. After 6 weeks on baricitinib she was admitted to hospital where she was diagnosed with 3 different infections of chest (pleurisy), throat (thrush) and stomach (gastritis). She was very ill indeed. The medics thought that the methotrexate/baricitinib had over suppressed her immune system so she had little or no resistance to infection -- quite a worry with Covid 19 about. After 6 weeks in hospital she was discharged in a very poor state, in fact the consultant even suggested we should consider signing a DNR (do not resuscitate) form. So things were pretty bad. The infections had been treated but she was probably in worse condition (health wise) on discharge than when she was admitted.

It was only 3 weeks after discharge that we had call from the gastro consultant to say that a test had come through showing my wife was ANA positive and also had a dsDNA of over 1000 -- for the first time the word LUPUS was used and we still do not have a definite diagnosis. Still on the long road of visiting successive consultants and their separate waiting lists etc. My wife is now a different person, still very ill, still in pain and unable to do any of the jobs and hobbies she has happily done for the last 50 years and I have become a carer. Very tough for both of us, especially with shielding since February.

I guess the moral of this story is to be wary of these medications, they are very strong and do not suit everyone. I am also sure that for other people they are very effective -- sadly not for us. Keep safe and good luck.

[Sandy1212 in reply to BeeManShrop]

Hi BeeManShrop, i am so sorry to hear your wife had such a difficult time! It must have been very upsetting for you to see her like that! I am glad to hear she pulled through but I am saddened that she is still in a bad state. I do hope for you both that she will eventually improve! Thank you so much for sharing the experience, i hope you both keep safe also. Take care x