Treatment changes - Rituximab?: Finally saw my... - NRAS

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Treatment changes - Rituximab?

whitedog profile image
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Finally saw my consultant again last week. Think he was quite surprised at how swollen my hands have become and he said I'd done well to keep going.

So am feeling a little more positive, though I'm battling through a lot of pain. The steroid jabs I had in my finger and thumb base seem to have given me a tad more flexibility but my wrists, upper arm muscles and shoulders are giving me grief, especially first thing in the morning and now my pesky knees have joined in.

While the nurse I spoke to on the phone in December dismissed my latest symptoms as 'OA that everyone over 50 gets' and another, more sympathetic nurse I spoke to, a couple of months later, suggested it was probably a bit of both RA and OA, the consultant seemed confident that it was a progression of RA.

He has suggested I give Rituximab a try and sent me off for a chest X-Ray and blood tests to check if I'm OK to have it.

Also, interestingly, they've booked me an appointment at an iritis clinic. In all the years (over 20) that I've had my primary eye disease; Fuchs iridocyclitis, that has been treated by my glaucoma consultant, I've never had Rheumatology take an interest in it before. So I'm assuming they're looking for links.

I'm really hoping I can have these infusions. I declined injecting myself with anything again as previously, doing so made me feel so nauseous, both with MTX and placebo on a trial.

Can I ask anyone on Rituximab - how long did it take to organise? My X ray etc was just over a week ago. Not heard back yet. And how long before you started to feel any benefit, if any? Anxious to get going on something else as I think the sulfasalazine isn't enough now, sadly.

Thanks

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whitedog
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6 Replies
AgedCrone profile image
AgedCrone

If all your test results are OK your rheumy will have to apply for funding to you pr local health authority….how long that takes depends on the area you are in, but it’s usually sorted within a couple of months.

I have been on Rtx for 7 years now,& it has been really successful …Hope it turns out to be the same for you.

whitedog profile image
whitedog in reply toAgedCrone

Oh I didn't know that. Longer to wait than I thought then. Glad it's been good for you.

janmary profile image
janmary

How long it takes to start RTX depends on many things so every experience is different. I found that the first infusion set took 3 months to have significant effect, the second set much more effect more quickly. Good luck

whitedog profile image
whitedog in reply tojanmary

Thanks. Yes, I guess we all react differently. Hopefully some warmer weather will help, meantime, as things are a bit of a struggle at the moment.

Akaka profile image
Akaka

In my case it took about 6 to 7 weeks to get the first infusion. I had the second infusion at the beginning of March but can’t feel any improvement as yet. You do get a steroid infusion prior to the Rituximab infusion which may well help your hands etc. I did get my wrists injected during the second infusion as they were so painful. Hope you get sorted quickly.

whitedog profile image
whitedog in reply toAkaka

That's reassuring - I'd happily accept a steroid infusion if I could have it. The injection into the base of my thumb hurt a lot so not sure if I could cope having my wrists done unless they were numbed first. Will have to see how things go. I've got an appt for ultrasound in May so will try and find out more then. Thanks.

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