Rituximab infusion : Hi, I am new to this but would... - NRAS

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Rituximab infusion

Flowers2020
Flowers2020

Hi, I am new to this but would really like some help or advice in regards to Starting the rituximab infusions? How safe is this medication and effective? I have been on methotrexate combined with Etanercept injections for about 7 years and stopped methotrexate as it causing me bad side effects. Having stopped this for a year I was managing fairly well until last month I have been very unwell with flare ups and new joint damage in other areas of my body. I am worried about which medication to try next whether I should try methotrexate again or start on rituximab infusion. Any suggestions or advice will be very much appreciated.

44 Replies
oldestnewest

Well my husband had first infusion last year. No side effects. Think he only realised how well it worked when it began to wear off. Had to wait ages to get next infusion to be organised.

Unfortunately he had last infusion at the end of February.... although his joints are great, he has to shield. Your immune system takes a hit. Just bad timing I guess. But I would take advice before you have it, this covid 19 isn’t going anywhere soon.

cathie
cathie
in reply to Pop007

I’ve been having them for 5 years, very good. But the Covid is delaying everything, they won’t give it til things are safe. There’s growing evidence of infections of Covid acquired in hospital so I’ve accepted I’ll have to wait longer than usual

bpeal1
bpeal1
in reply to cathie

My rheumatologist delayed my rituximab for a month but I had one lot next last week and second dose next week. I think it depends on lots of factors including your age and other health issues.

cathie
cathie
in reply to bpeal1

My delays are nearly all because of the Covid issue. He also sees me as well controlled, not sure how well I'll be by November/December - that'll be a year since my last one.

AgedCrone
AgedCrone
in reply to cathie

Another thing to think of is proximity to Flu jabs.....you need to wait three months after an infusion....so anything after Jul/Aug is really pushing it...I’m hoping for mine in July...but who knows?

Neonkittie17
Neonkittie17
in reply to cathie

Mine is currently 8 months since the last one. I do know they are changing it to one infusion only now at my hospital.

Flowers2020
Flowers2020
in reply to cathie

Yes that’s my worry I doubt they will start me on the rituximab and maybe suggest I go back on the methotrexate, which isn’t something I want to do as it caused a lot of side effects.

Neonkittie17
Neonkittie17
in reply to cathie

I doing exactly the same Cathie and waiting but the nurse who phoned me (not my usual one) said you could come in but the set up has changed and it is an open plan ward with the chairs now closer than two metres, so I had to say review how things are in June.

cathie
cathie
in reply to Neonkittie17

So they're not keeping you at a distance?! Where are you? My rheumatologist did say he hoped to see me face to face (maybe mask to mask) in October...

Neonkittie17
Neonkittie17
in reply to cathie

They only stopped doing Rtx for a short while at my hospital and I’m not going just yet. I’ve delayed my infusion.

Flowers2020
Flowers2020
in reply to Pop007

Thank you for everyone’s response as it helps to know what others experience to help feel more positive in making a decision

Hope things work out for you 💗

Hi , sorry you are suffering. I have been having rituximab infusions every 6, 9 or 12 months for last 12 years combined with low dose methotrexate injections. Rituximab has been my life saver. Not really had side affects from it. I had my last infusion 3 days before lockdown!

I know it doesn't work for everyone , but it is worth a try .

I have had RA for 26 years and tried all sorts of medications.

Hope this gives you a bit more confidence to give it a go. Best wishes.

cathie
cathie
in reply to louise-p

How did you find the transition from 6-9-12 months intervals?

AgedCrone
AgedCrone
in reply to cathie

I’ve Had RA 20+ years... been on Rtx since 2016 ...I have tried twice to go beyond six months and flared within a couple of weeks both times...so I really hope I get my infusion in July......I can’t take Mtx.....so will just have to grin & bear it...it has been such lifesaver...I don’t want to switch drugs ..so painkillers will have to do the job.

louise-p
louise-p
in reply to cathie

I found that I could sometimes go for longer periods without needing it every 6 months. So I asked rheumatology team if I could put it on hold, hence having it at 9 months then 12 months. This time was 12 months . I have a brilliant rheumatology team who always listen to my side of things!

cathie
cathie
in reply to louise-p

Yes, I’m in edinburgh and the rheumatologist team is good here, but cautious

Thank you, it gives me confidence to know that it’s had a positive affect on a lot of people.

Hi, your story sounds the same as mine but I’ve been on ritx infusions for several years and it’s been very good for me, have had the odd hiccup through becoming complacent, I am usually good for a year but last time left it 18 months and ended up back on prednisolone, but once you understand the system to get a follow up without becoming too riddled you can lead a fairly normal life, it is a learning curve to understand yourself and deal with an ever changing personnel in the nhs

Hope this helps

Steve

Hidden
Hidden

A friend of mine has just had it confirmed she can have her 4th set of infusions. Because of Covid, she was afraid they wouldn't allow it. She swears by Rituximab and is very relieved, although anxious. She is very high risk from Covid partly due to Rituximab, but she also has COPD, and a heart condition.

GranAmie
GranAmie
in reply to Hidden

thank you for the info', it gives me hope as have been wondering if i'll get my infusion in June; lucky friend, wish her well! x

Maggsie
Maggsie
in reply to GranAmie

I've just had one on 12th May, next planned for 2nd June. They are still going ahead.

GranAmie
GranAmie
in reply to Maggsie

yeah but in N Ireland... I knew it was a bad move from Bournemouth to Belfast 55 yrs ago..

cathie
cathie
in reply to Hidden

Where is she? I'm finding that the situation is variable as to where...

Hidden
Hidden
in reply to cathie

Preston.

I'm hoping for my 4th annual infusions next month; methotrexate caused damage [ now recovered tho'] and after a painful 6 months' wait Truxima {ritux biosimilar] was offered and after nerves b4 it - I've never looked back it has been a lifesaver 4me. Good luck :) x

Hi , I have been receiving rituximab infusions for the last 4 years I have not experienced any side effects and have benefited greatly from them. I find that if I have them twice a year it gives me about 8 good months, I find it takes between 4-6 weeks to kick in. I also use 20mg methotrexate by injection weekly. This helps me maintain a reasonable way of life I would recommend that you give the infusions a go if offered. Good luck

Thank you. As I’m currently taking Etanercept injection I’m wondering if it be better to continue that and go on rituximab if they start me on it rather than methotrexate as I couldn’t tolerate it very well towards the last year. I will speak to the specialist and see what they suggest. But feel more confident with considering rituximab.

Rituximab has been my saviour after two years battling with R.A. and having adverse reactions to the other DMARDS. I have not experienced any side effects whatsoever but the sheer joy of feeling almost “normal” again has been wonderful. The downside of the drug is it makes you more susceptible to infection than most, which is not ideal at the moment. It’s why my next dose got delayed and I’m having to shield atm but I hope to get my next infusion in early July. Bring it on!

They say that...but I have been on it for four years without as much as a cold!

I did have Flu for the first time after two years...but got over it fine...so I think it’s definitely worth taking...but without Mtx or the Methylpred as both do not suit me.

Like you I'm not on MTX either, but still taking 7mg Prednisolone daily. I'm keen to get off the latter and lose some weight so will discuss with my Consultant when I see him on June 7th.

I have not been able to take Pred for years..did try it again with first Rtx infusion- but it has such awful effects Rheumy said OK with out...& I now have very good good life on Rtx.

But I’m not complacent ....I had seven very good Years on methotrexate and thought I was set for life ...but I wasn’t ...so now I’m just thankful for every pain free day.

I really hope you do manage to get off the Pred.... it really is the Drug from hell.

Out of interest, would the majority prefer to have Rituximab ,and have to shield ?

Although I don’t personally have to shield, it seemed easier for my husband & myself to both shield. The idea of him staying in one room etc seemed unbearable. I have to say I’m climbing the walls. Haven’t left the house / garden since the 17th March...

bpeal1
bpeal1
in reply to Pop007

I’m on Rituximab and told I don’t need to shield. Take advice from your rheumatologist as they know you best and know what other drugs and health conditions you have.

Rituximab is the best drug I have had. Been on it several years now.

Lolabridge
Lolabridge
in reply to Pop007

Yes definitely, unless my Consultant can offer me an alternative to Rituximab that will work as well for me.

I have been on Rituximab since 2006 - the first three pairs of infusions were part of a trial and put me into remission for 7 years. Now they seem to last me around 12 - 18 months, may last being Jan 2019, so I expect to need another fairly soon. However, I am advised that, during the current epidemic, I should avoid another treatment for now. But it should be noted that is advice for me and should not be considered general. As for side effects, all I get is flushing to the upper body the night and following day after infusions. Otherwise it has been a life saver (except for my feet!!)

Hi Flowers. I’ve had reactive arthritis since my 20’s. I’m now in my 40’s. I have iritis & glaucoma too. I’ve been on Infliximab every 6 weeks for 15yrs. Then i had to miss a couple of infusions, as i had 2 ear infections. Unbelievably painful. Had to go to a&e. The right eardrum perforated the infection was so bad. I had 2 lots of antibiotics. That’s why i couldn’t have the treatment. (My right ear still isn’t normal. Plus i now have an infection in my left ear again. But i’m on antibiotic ear drops).

I’m writing this. Because i understand you’re bound to be nervous at starting a new Immuno drug. I thought after i stopped the drug for a couple of months i’d be a bit sore & stiff. But my God. This drug is a MIRACLE. When i was off this wonder drug my vision was deteriorating so rapidly. I couldn’t see the pavement. I was so scared to leave my flat. Loads attacks of iritis. But my joints. I was literally bedridden. The pain was indescribable. From my feet, knees, hips, back. Everything. I was using a stick. I walked like a 90yr old. I was on steroids, strong painkillers, stuff to protect my stomach. I felt sick the pain was so bad! I was put on Humira. I was injecting myself. But was told it could take 3 months to get into the system. It did nothing for me. Made me alot worse. I’m still having my infusions. Although i did have a break from it, as my gp thinks i had a mild version of this awful virus. My Rheumatologist actually thinks, the infusion might have helped me fight off the virus, as it’s meant to stop inflammation! He thinks it stopped my lungs becoming inflamed. Their thinking, is, it would be an extra thing for your body to fight, if you have another flare up of arthritis. So my hospital UCH are still doing infusions. They’re not stopping them & my God i’m so grateful. Like i’ve said. I’ve had this bloody painful disease 27 yrs & that last flare up i had was the worst pain i’ve had in my life!! So go for it & try not to analyse it too much! Just be grateful they’re offering you some sort of treatment & good luck! X

Flowers2020
Flowers2020
in reply to Vixen2

Thank you for your message. I’m really sorry to hear that you’ve gone through so much. I do feel more positive in considering the rituximab. They offered me this about 6 years ago but I was too afraid to start it, luckily the methotrexate and Etanercept injection actually started to work and help my joints for the last couple of years, but now methotrexate was affecting my liver and make me feel worse then usual with sickness. I stopped methotrexate for a year, and was fine, until last month I’ve had a sudden flare up of all my joints. I already have permanent joint damage in my elbow and hands and fingers and now noticing more damage happening so fast. I’m just not sure if they will have me start on the rituximab now with the situation we are in or if I should go back on methotrexate maybe at a smaller dose. They have given me predinsolone (steroid tablets) to take for 6 weeks but I’m still worried I am have more joint damage whilst waiting for what to do. I will speak to the specialist and see what they advice.

Vixen2
Vixen2
in reply to Flowers2020

Hi Flowers. Sounds like you’ve been through alot too. This is a horrible disease & makes you feel old ‘before your time’. But thank God we can have some sort of relief. I was on steroids with my infusion. But i hated them. I started to lose my hair on the crown. So i asked them to stop it. I sound vain. But hair’s important! Like i’ve said. They’re still treating people at my hospital. Hope they’ll know what to suggest. I’m sure they will. Good luck & this forum’s great. You can come on here, day or night. Someone’s bound to be up. We all know how you feel. Especially at the moment. We’re all feeling vulnerable. We all wish you well. X

Flowers2020
Flowers2020
in reply to Vixen2

Thank you! Didn’t expect the responses but it’s made a world of difference to know that there are other people that understand what we going through. I had lost so much hair being on methotrexate and even now that I’ve stopped it it’s still light. It’s ashame but I guess we are lucky that there are treatments out there that can help.

Am getting rtx as scheduled in August was given The impression that if it’s needed you will get it,

The first couple were a long wait in the hospital but I get a rapid infusion now so it’s three hours ish. I think u need and ecg as well before the first one

Did your consultant suggest Rituximab as the next possible drug? As there are other choices now that might be suitable at the moment with the virus about as they leave your body more quickly than Rituximab, and don’t need you to go to a hospital to have infusions.

Yes they suggested this a few years ago for me but the methotrexate combined with Etanercept was working, I then went off methotrexate due to side effects and was fine for a year, now they suggesting something different, they mentioned rituximab before this whole virus thing had started, and they also suggest I could go back on methotrexate.. just not sure what to do

I had my first set of infusions last December. The only side effect I experienced was a severe headache that started during the night after my first infusion. It was bad enough to miss work. I decided that dehydration was the cause. I hydrated much more the second time and had no problem. The med seems to have worn off for me at about 4 1/2 months, so I am really ready for my next round which hopefully happens in June.

All the best to you!

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