After recent setbacks on Tocilizumab/ MTX the rheumatology team would like to try me on RITUXIMAB .

Having read some of the posts here and visited many Rituximab web sites, I have reached the conclusion this is not a drug to be taken lightly. My biggest concern is PML after JC Virus re-activation, a rare complication which is nearly always fatal. I know the odds are quoted at 25000/1 & although those odds would be great for the lottery not sure they're so good for Russian Roulette. I know fatalities can occur from other causes such as infections or reactions but with proper monitoring you still have a fighting chance. There is no such luxury with PML. There is no cure and It can happen at any time and is a known issue with Ritux. Life expectancy is probably two or three months before the brain is destroyed. To me this sets this drug aside into a different category & I'm not prepared to go there. Other drugs with this association have been withdrawn from the market. I would be interested in your thoughts on this and whether you had all been informed of this association before treatment started. The warnings are well publicised on the various web sites but I wonder how many bother to read them. The last thing I want to do is spread fear and alarm to patients who could well do without these to add to their problems but I wonder if tests could be done to check for PML antibodies. If you've never had the virus it can't be re-activated. This would apply to 50% of patients who could then have peace of mind. Is there any research taking place to find a cure for PML itself I also wonder. There are many questions and I'm sure some of you may have the answers to what may be an irrational fear of what could be a very effective drug

25 Replies

  • As someone who is about to have a Rituxumab infusion this has put the fear of God into me know, I was made made aware of a very slight risk but it had not been explained like this!! I shall be contacting my helpline tomorrow....I am interested in any other replies you get to this post especially from any long term users of the drug. As someone who is seeing a clinical psychologist as I've started to develop a drug phobia after trying and failing many of the drugs available...I wish I'd never read your post...I'm hoping in the meantime NRAS reply also with some reassurance!!

  • Hi 3LittleBirds2

    Please see my response to this post below.

    I hope that helps, but please feel free to call the helpline to discuss if you're still concerned.

    The helpline is available Mon-Fri, 9.30-4.30 on 0800 298 7650.


  • Thank you Victoria! I had read this information after doing my own research after reading this post, it has put my mind at rest a little and let's face it everything we do in life comes with risks and as others have said, untreated RA can also cause havoc!! My reaction was justified I feel though considering my history of taking and trying these drugs...I wish the poster no harm of course I just felt that the post is not a very helpful one....in my own opinion but of course everyone is entitled to theirs. Thank you

  • My apologies, this was not what the intention was and I can see I will have to be more careful about my words so as not to alarm patients with what may be irrational fears about a very good med. I'm sure the medics will monitor you carefully and I hope it works well for you

  • You really don't have to apologise but thank you 😊 I agree the wording of the post may not be great especially for someone like me but I'm an adult and I can choose to read it or not...but I would read it especially as it's about a drug I'm about to have!! I've had one round of it and to be honest it didn't do a great deal but I'm going to stick with it. Every drug we take comes with risks we just have to weigh up the benefits. Good luck to you too.

  • Hi, I agree with both of you. Your concerns were certainly justified 3LittleBirds2 and harryhunt43 I feel this was a good and important point to raise, but certainly worth being mindful when you word a post that all manner of people will read any posts on here, including people starting the particular drug you are expressing concerns about.

    One thing to add 3LittleBirds2 is that we hear from patients and rheumatology nurses that the second round of treatment tends to be more effective than the first, so if you didn't get the level of improvement you had hoped to, hopefully this will be the case for you!

    Kind regards



  • Thank you Victoria...I will look forward to that hopefully 😊 As I said before...it was not immediate improvement it took a long time but when it did I had a few weeks of feeling relatively "normal". Here's to round two

  • Last week I had my first infusion of Rituximab with a second due a week tomorrow. I was given leaflets prior to the infusion spent a long time with both consultant and specialist nurse and EVERYTHING was explained to me. I decided to go for it as life has been pretty grim for the past year with painful RA. I have tried other oral drugs but not found any suitable. The infusion went well I was monitored constantly and have felt fine ever since. Because of latent TB I wasn't able to have other biological drugs. In life there are always risks you have to make choices. Let's face it we take a risk just crossing the road . I for one will continue with the Rituximab as being miserable and in constant pain is a life I don't want and if Rituximab works for me I won't have any regrets

  • I had 2 infusions if this then few months later started tripping up and see spasms. Now been diagnosed with Antiphospholipid Syndrome which is in brain and have to be on warfarin for life.strange thing us apart from RA n fibromyalgia I was fine.

    If offered Rituximab again I would run the other way.

    Some people are fine on it

  • I too was afraid when I read this. However if you look further into the stats it gave me more comfort and is about the same risk as traffic accident death. That is how I settled my fear and as I had neurological issues with anti tnf and was not functioning to the point of needing help getting dressed I went a head with blessing of my husband. The choice is yours. It is a difficult choice but I am pleased with my results.

  • I'm sorry to hear this. Was it caused by Rituxamab or just a coincidence? I know quite a few on this drug some new to it and some for years. It's also used for certain cancers but it's not chemotherapy. When I had it last Monday nearly all in the day medical centre were on it and I got very positive feedback The nurse said it was one of the best treatments available.

    I will not be put off!

  • I have been on Rituximab since 2009. It has been an amazing drug for me, inflammation right down. Previously on Infliximab for one year and Etanercept (Enbrel) for 6 years. PML seems to be more of a risk when Rituximab used in Lymphomas and Leukaemia - very rare side effect. All drugs have side effects and we have to be informed of all of them. Many of us are on Methotrexate and the patient information leaflet for that is very alarming too. We can only make our own choices with guidance from the professionals. Good luck, whatever you choose. Just didn't want all your replies to be negative.

  • Hi

    Your concern about PML is completely understandable given how serious it can be, and as you might imagine we get a lot of calls about this on our helpline. As a result, we've come across some information over the years which I thought might be helpful.

    This paper from 2011 looks at 4 cases of PML in patients receiving rituximab for RA. At this time around 129,000 patients had taken this drug for RA, and they suggested the risk was around 1 in 25,000, so there can only have been around 4-5 cases ever. In looking in more detail at the 4 cases, two were said to possibly be at increased risk due to history of cancer, though such a link is hard to tell in such small numbers:


    1/25,000 makes this a very rare complication, but might still sound like too high a number, but perhaps knowing that there have only ever been around 4-5 cases, that 2 of the 4 looked at in the above paper survived and that some of the cases had other health problems which may have contributed might put this in better perspective.

    For anyone considering starting this drug or already on it and concerned about PML, it might also be helpful to know what top look out for in terms of symptoms of PML. The patient information leaflet says:

    "Tell your doctor immediately if you have memory loss, trouble thinking, difficulty with walking or loss of vision."

    I really hope this information helps.

    Kind regards


    (NRAS Helpline)

  • I take this and it has helped a lot. I first started taking biologics in 2002 and they feared a link with cancer then. I just had to balance that against the complications of RA which are known risks.

  • I just wanted to add the blood tests they do before you start Rituximab are fairly rigorous, four vials of blood are taken...I am not sure what they are looking for with all of them...but they are checking the immune system. If somebody in the know could enlighten us...that would be helpful?

  • That would be reassuring. If PML could be ruled out before 1st infusion it would make huge difference. Anything else I'd take a chance on but not PML

  • Not posted on here before but just thought I had to do after reading all the negative reports on Retuximab. I personally have been on it for 8 years now & to me it has been a god send, giving me a new lease of life & although not free of R/A (flare ups) am doing well. Like people say, it won't be good for everyone but having tried a lot of other treatments this to me was a miracle. Not affected my brain as yet, although my wife may not agree LOL.

  • even though I have not taken Rituximab myself and I don't know what any of your ra dr's are like but if you have any concerns about this drug have you thought about talking to your dr and seeing if there is any other treatment they can give you?

    Little Birds I also found that none of these meds worked for me but I would try not to panic about things you really need to try and talk to the person in charge of your health care. Even though I am still on a small amount of meds I have personally found that we need to talk to the dr's that are in charge of our health and need to find other ways to treat our ra. Hey though that is just my experience with things we all need to do what is right for us.

  • Hi Kalel....I am not at all panicking!! Anxious maybe but certainly not panicking. Anxiety about having these meds is natural I feel especially when you first start having them...I've been through one round of Rituximab with a reaction on the first one but I was very well looked after! I wouldn't talk to my doctor about trying something else at the moment as to be honest after doing further research I've read more positive stories than bad about Rituximab although this very serious side effect is worrying...but in the future especially if it doesn't work of course I will. I am always looking into alternatives but at the moment I need these drugs to try and get my disease under control, alongside a healthy balanced diet and trying to keep as active as possible...thank you for your suggestion though 😊

  • Hey littlebirdsno problem I understand what you are saying .. I understand about feeling anxious as you said for most people it is perfectly normal.

    Exactly keeping as active as poss is so important my physio has made sure that I am always doing something and if I don't I always feels guilty because I can't afford to not do anything but with saying that I really want to start boxing taking boxing lesson etc again soon so I have no choice but to be as fit as poss.

    I don't know if you ever listen to some of the paddison podcasts but I know that dr gregor has spoken about potassium and ra and other things. I have actually found that just doing simple things like taking my vitamin d and Chinese herbs etc also really helps with ra.

    Good luck with everything.

  • littlebirds do you know what happened to free the pixie I know she disappeared any. Maybe she is not coming back to the NRAS page this time. :(

  • Hi...I haven't a clue!! I don't think she's deleted her profile?

  • maybe she did. Just wondering that was all. It is such a shame if she has left but what can you do. :(

  • Hi, my life was hell 4years ago, I did not want to carry on, then I was offered Rituxumab, read all the information and spoke to my nurse, After much deliberation I decided the risks were worth taking a chance on. I HAVE NOT LOOKED BACK, My life has taken on a complete new meaning, Good luck to everyone who decides on this wonder drug.

  • Hi. I'm so hoping I get the same response as you. Second infusion next week. We have to weigh up the pros and cons and like you it was worth going with it. By that time life is grim anyway and you try anything to put things into remission.

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