Rituximab : Having tried a number of meds my Rheumy has... - NRAS

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Rituximab

Bizzie profile image
24 Replies

Having tried a number of meds my Rheumy has recommended I try Rituximab. I’m miserable on the current treatment but I was really put off Rituximab when he said there was a very rare risk of death! I know there are always risks but no-one has ever said that to me before.

I’ve put it on hold for the moment but would be grateful to hear from any of you who have taken it or are on it now.

24 Replies
allanah profile image
allanah

Yes I think all treatments have side effects, I was on it , no problems, didnt suit my RA so was changed bit I felt very well when I was on it x

Bizzie profile image
Bizzie in reply to allanah

Thanks allanah that’s really helpful. I hope you’ve found something that works for you now.

allanah profile image
allanah in reply to Bizzie

Yes TCZ but ritux started the improvement

Lolabridge profile image
Lolabridge

It has been a game changer for me as I had bad reactions to all the previously prescribed DMARDS and Benepali didn’t work for me. It has enabled me to live an almost normal life and I’m really looking forward to my next infusion which had been delayed.

Please try not to worry because the risk of PML you have been told about is absolutely minimal. Your health professional has a legal obligation to warn you about it!

Rituximab has given me back my independence, mobility and taken away my pain so that I hardly ever need to take painkillers now. And I don’t suffer with any side effects either. What’s not to like?!!

Bizzie profile image
Bizzie in reply to Lolabridge

Thanks Lolabridge. It’s really good to know what a positive effect it’s had for you. I live on painkillers, as well as all the other meds and I’ve forgotten what it’s like not to need them!

I’m going to give Rituximab a try I’ve decided.

AgedCrone profile image
AgedCrone

I have been on Rtx since 2016.... Still alive and kicking and enjoying a 95% pain-free life-best RA drug I have been on in 20+ years!

Off next week for my infusion away day.....a nice restful day.I drive myself there & back with no problem.

There is one very very rare side-effect called PML...but it affects a miniscule number of people... The biologics nurses at the clinic I have my infusions have never known a patient to experience it.

For once do read up online about it I think it will put your mind at rest.

Bizzie profile image
Bizzie in reply to AgedCrone

Oh that sounds amazing AgedCrone. With your advice and that of other people I’ve decided to give it a try.

Thank you.

xstitcher profile image
xstitcher

I started on rituximab in 2011 & had my 11th cycle on wednesday. I've found it works well for me & lasts 9 - 12 months. No real side effects except that sometimes, like this week, I get a few headaches following the infusion. Good luck. X

Bizzie profile image
Bizzie in reply to xstitcher

Wow xstitcher I’m so glad you’ve found something that’s worked so well for so long. I’m definitely going to try it.

Thanks so much for your help.

oldtimer profile image
oldtimer

There is a risk of death from crossing the road!

Unless it is put in context that statement is useless for making a decision.

Perhaps it is part of a tick list of 'side-effects' that he is supposed to go through!

Look at the information on the NRAS website for clear and accurate information.

Bizzie profile image
Bizzie in reply to oldtimer

Thanks oldtimer. I’m just in the process of researching it a bit more. The feedback I’ve heard from everyone here though has been amazing and I’m pretty sure I’m going to give it a try.

lala1958 profile image
lala1958

Hi Bizzie

I was on Rituxan for 2 years. I got it every 6 months, one infusion then another 2 weeks later. Then wait 6 months and repeat. I was in heaven normal for 2 months of the six but my rheumy thought that only 2 months was not worth it for me after each round so I changed drugs. I was afraid at first to take it as well with the health risks of it but frankly all of these RA drugs have serious side effects and I was fine with it. I just wished that it had worked longer for me as I got my energy back and I had less pain.

So in the end you may be trying several drugs or get lucky and your body responds to a drug that will put you into remission and maybe Rituxan is that drug for you.

Good Luck with your journey.

Bizzie profile image
Bizzie in reply to lala1958

Thanks lala.

I’ve only had a couple of drug regimes so hearing that you have changed a couple of times helps. The thought of finding remission finally gives me the courage to try this out despite the risks cos I don’t think I can cope like this for much longer

I hope you now have one that works for you.

Thanks again for your help.

AgedCrone profile image
AgedCrone in reply to Bizzie

Please don’t rely on regularly changing drugs to find perfection. Obviously..... if you are really experiencing unacceptable side effects you will need to change....but listen to your rheumy team....they really do know the difference between ’ it’s a lost cause ...or give it a bit more time.’

I have no scientific proof..but tbh I think the more drugs you give up on too soon....the more you are tempted to change just one more time thinking “I might feel even better“ ...trouble is if you don’t .....you often can’t go back.

I reckon if you can lead an acceptably reasonable, normal life for you ...and that is different for everybody .......don’t think if you swap drugs you will be able to go back & do what you did ten years ago.....most fit people can’t do that .....so anyone with RA probably won’t be able to either.

But believe me...on the right drugs you can lead a very fulfilling comfortable life right into your dotage!💃💃💃

StormySeas profile image
StormySeas

I’ve been on Rituximab for about three years and it’s had a very beneficial effect on my symptoms. I too was very apprehensive about it. It’s natural to be concerned about these drugs, and at first it can be very frightening but you have to balance fear against the possible benefits.

If you think you’d like to try it, don’t wait too long as it can take a while to work. (I should heed my own advice here as I need another infusion and should contact the hospital to arrange it.)

It’s not an unpleasant procedure, and whilst I wouldn’t say I look forward to it, I do look forward to the benefits it’s so far brought me in terms of symptom reduction.

Bizzie profile image
Bizzie in reply to StormySeas

Thank you Stormy. I’ve had infusions for osteoporosis so I’m not bothered by that. My Rheumy is brilliant but he said the death risk so casually it really scared me. It was a phone consult and I think if it was face to face he would have seen my reaction and responded differently.

I think I’m going to go for it as the possibility of being pain free is a wonderful thought.

Thanks again

mhlmom profile image
mhlmom

I’m in the middle of my second cycle. Had the first in January. I had anaphylaxis with all the anti-tnf biologics so was running out of treatment options. Absolutely no side effects from Rituximab. The first cycle gave me 5 weeks of bliss and then tapered. But it builds up so I am expecting good things from this second cycle. Everything in life carries a risk but RA without effective treatment isn’t much of a life. It a trade off I’m willing to take - the minuscule possibility of an exceptionally rare illness or the reality of being crippled by RA. I enjoy my relaxation days getting my infusions and Rituximab also carries the lowest risk of getting infections of any of the biologics apparently.

beachbabe profile image
beachbabe

Hi I’ve been on rituximab for about 4 years now and I think it’s brilliant - I have it every 6-8 months. When I feel my feet and hands Start to stiffen I am told to get a blood test so the clinic can see if, before treatment, my bloods are normal then if all ok I’m booked in for a treatment. 2 separate infusions 2 weeks apart - it takes about 5 hours in hospital to have the drug thru a Drip. I have no side effects apart from the next day I’m always very hot 👍

Angels-delight profile image
Angels-delight

Hi Bizzie, I am on Rituximab infusions. The first set of infusions I did get relief for a couple of months, then I had a problem getting hold of my Rheumy and I was 3 mths late getting the next set of infusions and I didn't feel any benefit. I am going for my 3rd set on Thursday and this time my appointment(s) are on time and fingers crossed (if I could) I will get good results. I had a Lidocaine infusion for fibromyalgia and I felt good on the way home. I live in a bsmt apartment, I was only home about an hour when water started to pour into my flat. Approximately 15 gallons. I now have to move earlier than planned. The owner had to sell due to being out of work. He is a great landlord and is helping me as I probably will have to move in less than 2 weeks. Thankfully I have a lovely family who live close by. I really do hope that the Rituxmab infusions give me a lot of relief this time and I can start to enjoy myself in my lovely new home stress free after the move.

Good luck, I hope you decide to go ahead with the infusions and you can enjoy life pain free. This is a great website and people really are helpful at NRAS

Take care and stay safe

Susan

Bizzie profile image
Bizzie in reply to Angels-delight

Oh dear Susan, I’m so sorry to hear of all your troubles. I’m glad to hear you have such a kind landlord and I hope you can get settled again soon.

With all you’ve got going on I really appreciate you taking the time to respond to me with information. It was very helpful.

Thank you and I’m sending my best vibes to you. x

Angels-delight profile image
Angels-delight in reply to Bizzie

Thank you Bizzie, I hope every thing works out for and you can feel so much better.

Take care, Susan

madme1 profile image
madme1

I have taken it before, but they are possibly changing me to adulimibab, because of Chrohns/Colitis. But everyone's different and it may not be the same for you. I did feel a lot better after it. If you go to hospital for an infusion, they start by giving you what's called a flush, intravenously. You may get the taste of iodine at the back of your mouth, but that's ok. They will then change the bag to the rituximab or whatever, and about an hour before that you take two paracetamol. Once they start the drip, you can ask them to slow it down, if you wish. They then give you another flush afterwards that takes around 1/2 an hour, but again everyone is different. You are fed and watered whilst you're there, at least at my hospital I was and all the staff are extremely caring and experienced. Some side effects for me were a flushing of the cheeks on my face and they became very hot. I was also very tired, (nothing unusual there)! 🤣 Otherwise I felt like I had a rush of energy! Expect to spend from say 9am to 3pm in there. Hope this doesn't scare you too much, it did help me, hope this answers some of your questions. Don't forget if you are spending the time in hospital and you come in a car, give your registration in and you shouldn't get charged.

Bizzie profile image
Bizzie in reply to madme1

Thank you madam1. That’s really helpful to know the process. I’ve had other infusions before but they were a bit more straightforward. I am worried about it because I have very poor veins but I’ll have to remind the specialist nurse when I have the consultation next week.

Thanks again for your help.

madme1 profile image
madme1 in reply to Bizzie

Let me know how you get on but believe you me they will take care of you and good luck.

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