Rituximab/Remission?: hello everyone. The senior nurse... - NRAS

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Rituximab/Remission?

ks1966 profile image
26 Replies

hello everyone. The senior nurse I saw last week told me that I “may” be in remission.

what happens next in terms of my rituximab infusions? Can they deny me this or any other treatment?

If this medication put the brakes on this beast, is there a point in stopping them?

Thank you

26 Replies
MadBunny profile image
MadBunny

Good news! It's great that they've found something which is starting to work for you.I've been on the biologic Cimzia for 8 years and have been in remission for the whole time, once it started working. It has never been suggested that I stop, as it's the medication which keeps me in remission. And if I've ever have to stop it for any reason, my joints soon start to complain. As you ask- is there any point in stopping them? If you are unsure , you could always ask the nurse.

Wishing you all the best 🐰

ks1966 profile image
ks1966 in reply to MadBunny

thank you 😊

helixhelix profile image
helixhelix

for most people it is chemically controlled remission, so you continue with treatments. With Rituximab they might want to extend the gap between infusions. With others they might reduce doses a bit. But normally you continue to be monitored and at the first sign of activity a full prorocol will be reinstated.

ks1966 profile image
ks1966 in reply to helixhelix

thanks

Neonkittie17 profile image
Neonkittie17

As someone who has had Rtx for 8 years (and it’s still working for me even though over a year since having my last infusion) it’s held back RA from the first infusion, apart from a small blip when they couldn’t get me in for an infusion slot in 2015. It’s always kept my RA disease activity at bay and CRP down at zero.

I wouldn’t have thought at all that your rheumy team would want to jeopardise their good work and what Rtx has done so far for you. The rheumy may mean let’s see when it starts to lose some efficacy as opposed to let’s keep giving you it every 6-8 months irrespective of if you are ready for it.

Blood tests for your B cells should show the rheumy if your B cells are repopulating, which is when they get you back for infusion. I would not think at all they are going to deny you Rtx. You could ask outright their policy on repeating Rtx. Some people like myself can go 12-14 months before they’ve needed another Rtx and some are really ready for it 6 months later. I hope you get some clarification and good to know Rtx is controlling your RA well.

ks1966 profile image
ks1966

thank you. I hope so too

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

if I was a betting women I’d put my savings on them not stopping your Rtx! 💗

ks1966 profile image
ks1966 in reply to Neonkittie17

I hope so too 😊

Neonkittie17 profile image
Neonkittie17 in reply to ks1966

Just ask the nurse for reassurance but you’ll be fine. 😀

AgedCrone profile image
AgedCrone

If you are comfortable & your blood tests are satisfactory…..depending on how many infusions you are on…you could start by just having less infusions a year. In the last few years Rtx infusions have dropped from the norm of 4 infusions per year to two…& patients do just as well.

Your rheumatologist will keep an eye on you, & in turn you will need to report if you experience any changes - back to your rheumy team. But do ask your rheumy nurse- she will have dealt with this situation before.

It’s not a question of denying treatment....just that you are a lucky lady & the Rituximab is doing its job…& halted your disease progressing. I haven’t had an infusion since Jan 22……. my blood tests are all satisfactory & I am doing fine with just analgesics…..I was due to have another infusion last month..but other health problems prevented that & I’m still OK.

Don’t worry….your rheumy won’t just abandon you- because you are in remission.

ks1966 profile image
ks1966

thank you that’s good to know

Lolabridge profile image
Lolabridge

That sound like excellent news!

Do you feel as though you could be in remission or is it that your CRP and ESR bloods are in the normal range and so you’ve been told you are? If you still have any swelling or pain in your joints or regular bouts of fatigue perhaps it’s just a low level of disease activity rather than remission.

As others have suggested perhaps you will be encouraged to have fewer infusions (one in each cycle instead of two) or go longer between cycles. If that regime still works well for you then that’s great.

ks1966 profile image
ks1966

hello. They told me that mainly my Crp levels are low.

debjw profile image
debjw

Hi, that’s great news! I’ve had two rounds of rituximab with 6 monthly intervals and they have really helped me. Unfortunately they wear off after 5 months and I have to have a depo shot to keep me going while I’m waiting for them to get funding. I’ve now been waiting nearly three months for it this time and have just been told I’ve got it next week and again two weeks later. Apparently they are desperately short staffed and haven’t got the slots. I’ve been really struggling again as the depo was now 6 weeks ago. Is anyone else in this situation?

ks1966 profile image
ks1966

hello. I hope you get your infusion soon. What is a depo? Thanks

debjw profile image
debjw

a steroid injection to ease the pain while I’m waiting.

Sheila_G profile image
Sheila_G

That is great news. I have no medical qualifications but I was told that I am only in remission because of my medication. Remission in RA isn't like remission in other illnesses. Remission in RA usually means that you have few joints affected (DAS score) therefore little active desease. It doesn't mean it has gone. I am sure someone who is qualified on here will confirm or deny what I have said. Don't worry, your medication won't be stopped.

ks1966 profile image
ks1966 in reply to Sheila_G

thank you 😊

Evie3 profile image
Evie3

what a lovely feeling it is to have little or no pain which is probably due to Rituximab. I am certain if I come off this my pain will come back. I havent had my infusion since January and joints still good. Mayb a discussion extending the time between? Enjoy your life

ks1966 profile image
ks1966

thank you 😊

bienassis profile image
bienassis

Remission is, of course, very welcome; but it doesn't mean the disease has disappeared! It is rumbling there in the background. I've had long remissions since diagnosis, but have never given up the medication. A reduction in dose might be advised by your rheumy - but hardly likely to be stopped.

Anyway, enjoy the break and I hope it lasts for many years, as mine did.

Good luck,

bienassis

ks1966 profile image
ks1966

thank you. I’ll try if my wrist and elbow and and and let me 😊🤗

Green230461 profile image
Green230461

I continued with treatment to keep it in the box! Enjoy it whilst you can 💐

Escapejan profile image
Escapejan

Senior Nurse told me the same I’m on Baricitinib and am in remission. I also said please don’t take away my meds! She said they might reduce the dose when I see the consultant in 6 months. I’m so grateful I was given this drug!

Dogrose profile image
Dogrose

I've been on Rituximab for a few years now and I just call when I start to get symptoms again, longest has been over two years. I always go back on it when I need it though. They have reduced it to one session though, not two.

ks1966 profile image
ks1966

thank you 😊

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