shall I go for the rituximab?: Hi all, I’m looking for... - NRAS

NRAS

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shall I go for the rituximab?

Springerfan profile image
27 Replies

Hi all,

I’m looking for people’s experiences with rituximab. I’ve had to come off tocilizumab after developing diverticular disease and I’ve been offered rituximab. I’ve heard scary things in the past about this so I was hoping to hear how people have found this drug.

Many thanks 😊

27 Replies
AgedCrone profile image
AgedCrone

I have been on Rtx since 2016 & after having had RA for 20+ years I have found it to be an excellent,convenient way to control my RA.I haven’t found I get any extra infections..& I don’t have to worry about taking any daily meds…I don’t take MTX with it.

The Severe side effects you read about like progressive multifocal leukoencephalopathy, are of course very scary, but when I was first offered it I asked my rheumatologist about that ….& he ….a middle aged man …had never come across it in a patient.

Of course it doesn’t suit everrbody…but then which RA drug does? I hope if you decide to try it you have a good experience with it.

Evie3 profile image
Evie3

Hi. Been on Rituximab since end of 2019. I am asthmatic too. It is brilliant for pain relief. Unfortunately over that period I have had 19 chest infections. Only had one infusion this time (normally its 2 ) and if I get another chest infection I will have to change….which will be annoying. It severely knocks your immune system, hence how it works so well. We are all different…..apart from the chest infections, it has given me my life back. All the best

priss58 profile image
priss58 in reply to Evie3

I started it in 2009, I had no problem with it and had 9 infusions until 2018, when a new rheumy refused to give me more. Luckily, I've found a different consultant who may put me back on it soon. I rarely had infections, nor did I take methotrexate at the same time.

Evie3 profile image
Evie3 in reply to priss58

you just have to be careful after having a break from it. Lady in chair next to me had restarted and they had to stop the infusion as she had a reaction…..something about her body producing antibodies against it.

priss58 profile image
priss58 in reply to Evie3

I will bear this in mind and quiz the consultant about it before I restart. Thanks.

AgedCrone profile image
AgedCrone in reply to Evie3

That is what I am worried about, especially as I had Covid recently & am due Rtx late February. I was tested & had no antibodies prior to having Covid….altho due to various reasons my last infusion was 12 months ago!

I will really stamp my 🦶 if I have to change meds.

Evie3 profile image
Evie3 in reply to AgedCrone

i had waited a year and I was fine…no problems.

Re Covid have you joined FB Evusheld UK group? They r fighting for immunosuppressed people to get Evusheld and therefore protection from Covid.

AgedCrone profile image
AgedCrone in reply to Evie3

No….I am not keen to have more jabs than necessary.I hope if the investigations prove it’s possible to provide it on the NHS those that want it can get..but I won’t unless my consultant decides I really should.

Evie3 profile image
Evie3 in reply to AgedCrone

i definitely wont be paying for it but if it enables me to go back to normal life I will be in the queue😉

AgedCrone profile image
AgedCrone in reply to Evie3

Having finally contracted Covid ..I’m left with a bit of a cough & a bit breathless ….both fading now…..previously I was living very comfortably on Rtx every 6/8 months…& I really hope to return to that.

Apart from a few phone calls to check my stats from Covid Care at Home…after I was too late for the antivirals…despite being 80+ & on Rtx…..I just got on with it until they decided to send two paramedics in an ambulance on New Year’s Eve…which considering they were saying how busy ambulances were, was a bit odd & not really necessary …I had needed reassurance at the beginning when I could hardly breathe…..an unusual experience for me. ..but all’s well etc! But really hope I don’t have a repeat infection.

Evie3 profile image
Evie3 in reply to AgedCrone

When I got Covid in July, being asthmatic as well, I was expecting to be able to have antivirals. However 111 said I would get antivirals but the person they referred me to locally said it wasnt deemed necessary. I was frightened that I wouldnt survive. I had a bad chest infection and with antibiotix came thro it after a worrying time. Like you, I hope to avoid it. Take care

medway-lady profile image
medway-lady in reply to AgedCrone

I'm glad you're getting better and that your cough and breathing soon gets back to normal. XX

AgedCrone profile image
AgedCrone in reply to medway-lady

Thank you….Breathing much better ‘til I changed the Duvet Cover…I was really puffing then 😤& the cough was really only a niggle! So thankfully I really got off lightly.

Shresworld profile image
Shresworld in reply to Evie3

Same has happened to me just getting over a month long chest infection and also have had many other infections I'm sorry to have to discontinue it because it worked so well.

Evie3 profile image
Evie3 in reply to Shresworld

I hope you find another that suits

janmary profile image
janmary

I started on infusions in late November for the same reason as you. Not on anything else at the moment . I had been in a major generalised flare after having to stop previous meds). It took a long time to have an effect - 6 weeks (Im very impatient) Then I got COVID - very mildly but it reversed RA progress a bit - now back on track with no other side effects and improving - hoping to improve some more .

cozzycoz profile image
cozzycoz

I have had 6 infusion which have been absolutely fine with, it can take a while to kick in sometimes but when it does it’s like having your life back! I had it along side methotrexate too. You can feel a little drained after the infusion and I would suggest to rest for a couple of days afterwards. I am currently about to change to one of the Jak inhibitors now as they think it’s not working as well as it had! But it’s mostly down to having infusions delayed ( due to Covid-19) I would say I needed to have it in vey 10moths to 1 year but had been left for 1& half years so had R.A symptoms returning!

Good luck I’m sure you’ll see the benefits:)

Evie3 profile image
Evie3 in reply to cozzycoz

I had to wait a year and was desperate by the time my appointment came

Tkat10 profile image
Tkat10

I was on rituximab for 4-5 years, great response but started to realise that I had serious brain fog for about two weeks after each infusion. I was only in my 40s and work as an analyst so not good, tried steroids and reduced dose but in the end switched. If i could take a month off each year I am sure I would still be on it as worked very well.

Evie3 profile image
Evie3 in reply to Tkat10

maybe thats why my memory is awful 🤯

Springerfan profile image
Springerfan

Thank you all for replying. It’s very helpful to get other people’s perceptions 😊

trenarren profile image
trenarren

Hi, I'm pretty much the same as the other replies, first treatment in 2019 after going through a lot of the alternatives since 2013. It took 9 months-ish to make any difference but now I am living a normal life. I still take Methotrexate but would love to try reducing that. The problem is we are all so different. I hope it works for you also.

AgedCrone profile image
AgedCrone in reply to trenarren

Mtx stopped working for me after 7 years so I couldn’t see the point if taking it with Rtx…rheumy agreed….he doesn’t like adding a drug just because the book says so..l.& until the wretched Covid Vaccinations seemed to interfere wiith my Rtx infusions I was doing fine on just one infusion every 6/8 months.

Time will tell how things turn out next month.

trenarren profile image
trenarren in reply to AgedCrone

Yes, I am seeing my actual Rheumatologist on my next appointment and I will be discussing to at least reduce my mtx from 15mg. As you, due to Covid etc, I've stopped my mtx for so many weeks now and with no real problem, so it does make me wonder if I really need it. For me, it's the chance that if the MTX is making a diffrence and things did get worse, reversing the procedure could take soo long, and I'm feeling so good at the moment!!... I will wait and hear her advice!!!

AgedCrone profile image
AgedCrone in reply to trenarren

I just stopped Mtx overnight & after the prelims I went straight on to Rtx infusions.That was 2016…so I can’t remember exactly how long it took to kick in..but it wasn’t long.I think I was fortunate in never having had any chest infections ….so I didn’t need lots of tests.

madme1 profile image
madme1

Hi I've been on Rituximab for the past 10 years. Had slight problems with cheeks becoming hot and inflamed but this goes after a few days. The name given to the drug I'm on is called REMSIMA this doesn't cause that described above, but i don't seem to get the same hit as when first on it. Yes it can give you an upset stomach , but reducing my metho from 6 2.5mg once a week to 3 2.5mg has helped with that. Even if I wasn't on Metho, I would still have it rather than the pain of a flare. I do get a fair amount of chest infections and had to wait 20 hrs in hospital on New Year's Eve then came home 4pm New Year's Day this time, but they tested everything. I have had lots of infusions and the care in the small ward where I am is excellent, I also look on it as a chance to get my life back to some degree, and as a time to rest, recuperate and be fed and watered at the same time!

Pookypoo12 profile image
Pookypoo12

hi thats really interesting as I’ve been diagnosed with that also, but they didn’t say it was the result of the biological drug. Are you and have rheumatoid I will come off it. I’ve had RAfor 41 years of 48 now and coming off any of my drugs if they were working was my last resort

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