Rituximab and belimibub: I have pretty horrid... - LUPUS UK

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Rituximab and belimibub

puffyface
puffyface

I have pretty horrid Sjorgrens and they think they're some lupus in there too. I have been on hydroxy 400 for some time now with steroids here and there, but rheumy recently said I should reduce to 200 for a while (can't remember why). She also said that I should think about methatroxate, Alizi....or another immunosuppressant. I've had a look, and none of them feel like very attractive options..and the side effects don't look great! They have just offered me screening for a trial of the rituximab/belimibub combination. She said that often when just taking one of them, the body can work the drug out, bug taking both as a combo seems to confuse the it! Obviously this is a trial, so I might get one or none or both, but just wondered if anyone had any experience of trials and whether it might be worth the risk.

I would be grateful for any thoughts.

X

7 Replies
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Hi there , i also have Sjögrens but I don’t really have experience of being on a trial . I have been on rituximab with good success for 2 years now , with the occasional up and down , at the moment its up . It reduced my lymph node and parotid gland swelling in particular but i also have increased energy and less joint and muscle pain . I wasn’t offered a choice which was easier, I hope you find the right treatment to suit you . Best wishes 🌸🌸

Where do you live? I didn't think it was available for Sjorgrens in the U.K. yet and belimibub(can't spell) only for "severe" lupus. I have a mixture, but think that the Sjorgrens in causing the most problems...so can't get either...hence trying the trial. Did you try things before rituximab for the joint and muscle pain? Could really do with feeling better now!

Hi puffyface , i live in the north of Ireland and receive my treatment in Belfast. Before i was diagnosed i felt very ill my joints and muscles were so painful I could hardly move and I spent a lot of the week in bed due to exhaustion and the pain , then my lymph nodes all became very enlarged so i went through lots of test ultrasounds biopsy and mri . I saw a number of different consultants until iwas eventually referred to a rheumatologist . I was started on hydroxy which made a tiny difference I went through a variety of different anti inflammatories and lyrica the only thing that helped a bit . The rheumy then applied to start me on rituximab particularly based on the lymph node swelling and was granted permission to start me on it and I didn’t think twice as it was my only option. It has given me my life back , though it did take time , I really hope you can get a treatment that works for you in the trial, best wishes again xx

Hi, sorry to hear you need to have extra medication to keep things under control. I’ve had several of the drugs you mention and it can take a while to find the right ones but once they get it right it can make a massive improvement to your life. The hydroxy guidelines now suggest 200 for most people (depending on weight) ; a lot of us on 400 have had it dropped recently.

Trials can be a great way to get access to the drugs and be very well monitored and both these biologicials are well tested so you won’t be a guinea pig for them, just seeing if the combination works. If you don’t get allocated to the treatment group some trials will give you the treatment anyway after the trial or if part way through it’s clear that those getting the meds are much better off - it’s worth checking with the trial coordinator.

I’ve had rituximab and it made a massive difference. I’m also on methotrexate and apart from a little sickness and dizziness have only had positives from it. I had a bad reaction to azathiprine (I think that’s the one you mean maybe?) but that was just me I think! I also have a lot of steroids which work brilliantly.

I’m afraid it’s all a balancing act for each of us as none of us want to take these medications and they do all unfortunately have negative side effects as well as positives but hopefully you’ll find the ones that work for you. Can totally understand your concerns though, I have had lupus many years and only just accepted that drugs will be part of my life for ever (every time I’ve tried to stop the disease has badly flared so I’ve finally learnt 🙄)

Good luck, will be interesting to hear how you get on with both biologicals if you do the trial. Presume you are dsDNA +ve as think this is the BEAT trial is it?

Hope things improve whatever you decide

X

puffyface
puffyface
in reply to Melba1

So lovely of you to reply. Thank you. I am in Cornwall just now with 9 teenage boys...trying to do what I've always done...but finding it hard this year. ANA, Ro and DNA..but no obvious organ involvement. Just hurt. Anyway, if they accept me I'm going to try the trial. I'm certainly not in the same place as you sound. I just have pain...but it's not serious. Hope you're ok this evening. Xx

Hi Puffyface,

I hope you are doing okay, it's not easy when you find out you need to up the treatment regime! I take Azathioprine and apart from some nausea, I have been fairly fortunate on it in terms of side affects so far but I'm still titrating up another month to 150mg. I'm hoping it does the trick to nip the lupus in the bud as it's attacking my brain and spinal cord but what I would say is to write your symptoms down daily and any side affects in a chronic illness app if you don't already as it helps massively to relay to the Dr/Rheumy nurse how you are managing.

I've never been on a trial for medication before but good luck for that if it goes ahead. I hope you find some relief. Sending a hug xx

Hi puffyface, I just had my second infusion of rituximab in July and am really feeling the benefit of it now. I have tried hydroxy methotrexate and mycofenolate all with no success. The sjogrens is the worst symptom at the moment. I hope rituximab works for you but give it time.x

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