Hi all, well after 6 months on hyrimoz and no improvement they want to start me on Rituximab. Does anyone know how long you have to wait before you can start, ie this wash out period were you have nothing??
The steroid injections have worn off again, inflammation crp up again tiredness back and the thought of having to wait a month or so before I get it and then wait to see if it works 🤞is making me feel depressed? Just wondered what happened to anyone else?
Look to the right on this screen Related Posts RITUXIMAB…click on that.
You will see many of us on here are on Rtx ….mostly very successfully…..when you have read them,I’m sure anyone who has replied there…including me…will be happy to answer anything not covered.
Unfortunately this is a question for your rheumatology team. There are several factors which could affect timings. Firstly the required gap between finishing your previous medication and starting Rituximab. It was so long ago I started Rituximab I can’t remember and anyway every medication will have different requirements due to differing half lives and it’s mode of action. Then there is the wait for funding to be approved, different NHS trusts have different ways of applying for this. Once funding is approved a day long appointment has to be booked, again different hospitals have different length waiting lists for this.
Contact your rheumatology team and ask them to advise how long it will be. Make sure you tell them how much you are struggling, they’ll assume you are doing ok unless you tell them. If you have a nurse helpline you could try calling them. If not call or email your consultants secretary.
I’m in a similar situation to you having failed on amgevita and waiting to start Ritaximab. At my appointment earlier this month I was told to stop amgevita and also leflunomide. I am still taking a low dose of sulfasalazine and the consultant has put me on a tapering dose of steroids initially for 3 months to continue even when I start the ritaximab. I didn’t ask how long it would be before I start but have a nurse appointment on 7 Feb and a series of blood tests to have before then.. I have also taken the opportunity to have my shingles jab before I start.
Thanks, good luck I hope you get it sooner than later. I don’t want to take oral steroids due to bone density issues, I ended up on them for 8 months before been diagnosed and never felt great on them, my blood pressure goes up and they make me feel depressed. I’ve a 30 min nurse appointment next week so I’ll find out more then. I am fed up of being in pain after 2 years of various combinations and I suppose I just want to see a light at the end of the tunnel. I have just had to stop taking anti inflammatories due to stomach issues which are still not resolved. I’m on a low dose of methotrexate as on higher doses I just feel nauseous. I know others have had to wait longer for ‘the right medicine’ but it does seem a bit of a lottery.
Hi Bookworm, I’ve had both Rituximab infusions now and no reactions thankfully. The main problem has been since stopping hyrimoz (which I thought was not doing much) was obviously doing something as the pain in my hands, wrists and shoulders is so much worse. The Rituximab takes a couple of months before you see an improvement so I was given the option of oral steroids for a short while but turned them down as they make me feel so depressed, on 30mg I felt like cutting my wrists, luckily my husband was alive then and took me back to the hospital (they were for an ear problem at the time) and said no way is she taking these! So I’m left for months now waiting and crossing everything in the hope this one works! No one has suggested the shingles vax although I think I’m eligible. Have you had your infusion now and how are you getting on?
Thank you. I’ll post when anything happens but as you say everything takes so long which is depressing when you’re in pain. My chest x ray and blood tests were only done (for amgevita) last March.
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