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Rituximab for RA

(16 Posts)
FannyCornforth Thu 10-Jun-21 12:07:38

DH will be starting on this soon.
Does anyone have any experience of it that you are happy to share?
Thank you thanks

Mary59nana Thu 10-Jun-21 17:03:41

Rheumatiod Arthritis support group on Facebook is a private group to join and is a invaluable to all who suffer and want meds advice /opinions
Iv been helped and given support so often regarding my RA and your never alone.

MawBe Thu 10-Jun-21 18:32:42

Paw had Rituximab ( a monoclonal antibody therapy) 14 years ago when he was diagnosed with PTLD
(Post-transplant lymphoproliferative disorders which are lymphomas that can develop after a transplant. ‘Lymphoproliferative’ means relating to proliferation (rapid growth) of lymphocytes.)
PTLD can develop in people who are taking medicines to dampen their immune system in order to prevent rejection after an organ transplant or an allogeneic (donor) stem cell transplant.
He went to the Chemo suite at the Royal Free once a week for I can’t remember how many weeks.
No side effects and it worked.
D3 had another “-uximab” as a drugs trial for nearly 5 years to treat Psoriatic Arthritis. It was a “magic bullet” and other than an increased risk of contracting infections, she was fine. The Arthritis receded and the Psoriasis disappeared. She had to come off eventually as she and SIL wanted to try for a baby.
Best of luck with it!

Greenfinch Thu 10-Jun-21 18:37:30

My friend's husband was involved in the initial trialling of this drug so I will ask her about it and report back. I do know that it was all good and succeeded for him when all else failed.

FannyCornforth Thu 10-Jun-21 19:36:18

Oh, thank you so much everyone for taking the time to reply, I really am touched by your generosity thanks

Marydoll Thu 10-Jun-21 19:43:52

Fanny I was put on Tocilizumab last year when all else failed. I believe it is similar in effictiveness to Rituximab.
It took about six months to work and the side effects were awful for months, including night terrors.
It took my pain levels down from a nine to about six or five.
I persevered after support from others on here and it was worth it! .

I inject myself once a week at a cost of £1000 month. Thank goodness I don't live in the USA!!! It does however, make you immunosuppressed and more susceptible to catching Covid.

Boogaloo Thu 10-Jun-21 20:08:08

I do live in the USA and have undergone several meds/treatments including Tocilizumab (Actemra ) injections and Orencia (Abatacept) infusions. My insurance covered it.

I don't have RA but another autoimmune disorder. None of the treatments helped my condition and had nasty side-effects. My doctor was willing to give it a go though - off label. I have been on steroids and pain meds for years.

Marydoll Thu 10-Jun-21 20:28:55

Boogalaoo, when I mentioned the USA, I meant that I was grateful the NHS paid for my treatment, no insurance needed. However, I did have to fulfil certain criteria, (and suffer extreme pain for years) before I could have it.

I'm curious, totally unfamiliar with the healthcare system in the USA, is there a limit to how much your insurance will pay out? What happens if people have no insurance?

LadyGracie Thu 10-Jun-21 20:36:27

DH had the infusion for a few years he had no side effects and it worked really well.
His consultant changed his medication to Baracitinib when his symptoms unfortunately started to return.

Greenfinch Thu 10-Jun-21 21:13:42

My friend said Rituximab was her husband's saviour when all else failed. It is given by infusion in hospital which means several hours there but it was worth every minute.His RA is so much improved and she did not mention any side effects. He is now on something different but his symptoms have not returned. It all sounds very hopeful for your DH.

Iam64 Thu 10-Jun-21 21:17:25

I’m on entenercept for RA. A biological treatment I inject. A life changer - feel better than I did twenty years ago
Hope it works for you fannyc

FannyCornforth Fri 11-Jun-21 08:38:14

Thank you again
Iam64 DH was on etanercept alongside methotrexate, but he's been taken off them after he had Covid and pneumonia.
He's got scarring on his lungs and those two medications would make it worse
He's been taking nothing for his RA for months. Although he is now on steroids for a month.
It's a real shame because etanercept worked brilliantly for him.

FannyCornforth Fri 11-Jun-21 08:51:27

I have got a terrible, awful admission - I have quite a supply of etanercept in the fridge, and like Mary's meds, it's very pricey. I don't know if they will take it back...

Dryginger Fri 11-Jun-21 08:59:21

I dont think they will take it back though. I had blood thinners when I had my ankle fused due to RA (both knees replaced too) and I had a whole box full still indate left when I got better, I took them to the chemist and they said they wern't allowed to take them. What a waste of NHS funds. But you can try.

Greenfinch Fri 11-Jun-21 11:27:32

They should not take them back in case people have stored them incorrectly.

Marydoll Fri 11-Jun-21 20:50:19

Fanny, if you take the medication to your pharmacy, they will destroy it safely. As has been said, they are not allowed to reuse them for health and safety reasons.
I often have to return unused medication, due to them being unsuitable. It is such a waste, but obvious why they can't be reused.

Although Methotrexate would probably have helped my RA, it is unsuitable for anyone with lung problems.
Those with both lung problems and RA , should have their lungs monitored, due to the possibility of a terminal condition called, Rheumatoid lung.
I have experience of this on a few occasions. Fortunately, much to my relief, it has just been a flare up of my lung conditions.