Rituximab causing: 'progressive multifocal leukoencephalopathy'

4 in a 100,000 will get PML, I think those odds are super scary and enough for me to say no to Rituximab. Am I being over cautious? The fact that it progresses very quickly is what scares me, along with there being no cure for PML :/ knowing my luck ill probably be one of those four :(

Are there any 21 year olds out there with RA? Maybe at uni? Or people who were diagnosed at a young age? Full blown RA not JIA. Please message me!

Thank you

7 Replies

  • I think possibly you are being a tad over cautious. The odds of NOT getting PML actually seem very good indeed to me. Say for example many secondary schools have a 1,000 students, and every single student in a 100 such schools was on Rituximab, only 4 students would get PML eventually. I'm also wondering how many people take this drug right now ..... you'd probably have to scour the whole of europe to find one single PML sufferer.

    Statistics are such funny things, if you look at statistics for how many people will get some horrible consequence from a Saturday night booze up, it'd probably be much, much more likely than 4 in 100,000. Or taking aspirin .... or road accidents ..... if we looked at stats for everything we'd have to stay under the duvet 24/7. And probably that's quite dangerous, statistically speaking!

    Decision making is tough of course, I'm not denying that. But maybe these statistics shouldn't be the prime factor in your decision, especially as uncontrolled RA is itself a health hazard.

  • Hello again,

    I understand why you are concerned, but I agree wholeheartedly with Postle. And as Postle says, the risks associated with uncontrolled RA are not insignificant - and probably statistically more likely than being unlucky enough to contract PML from having Rituximab. Having been through a lot of meds in the 18 or so years I have had RA, I have realised that the potential side effects of almost any of them make scary reading. But these days I take the approach that I would rather be as well as I can possibly be now, than lose that opportunity on the basis of something that may or may not happen at some time in the future That's not to say I don't understand your worries because I really do, I know that starting a new drug is always a big decision but I hope you will feel able to discuss your concerns with the rheumatology team before making your final decision - because it may be that they can help to put your mind at rest. And, specially given your young age, I feel it would be so sad for you to miss out on a drug which might make all the difference to your wellbeing and quality of life, on the basis of something which seems, statistically, so unlikely.. I don't know if there are any people nearer your age on the forum, but you might also like to try posting on the Arthritis Care forum - I don't know if they still do, but they used to have a section of the forum specifically for younger people with arthritis.

    Really good luck, whatever you decide.


  • Just to balance the argument, untreated inflammation can have pretty awful odds of causing serious long term effects as well. In the not too distant past for example, systemic amyloidosis was seen probably far more often than PML, in people who didn't have autoimmune inflammatory disorders treated properly. Now its far less common and thats a direct result of the improved treatment of diseases like RA. From my reading, the latest research on biologics is showing them to be considerably safer than many other meds used for inflammatory arthritis, but of course thats no comfort if you do happen to be the one in a million that gets the rare effect.

    I think its probably a really good idea to have another talk with your doctor about your concerns, and also ask them some really specific questions like : "are these rare diseases like PML reversible if they are picked up early?" or " if I did get a demyelinating disease triggered by a biologic, what are the odds that I would have got it eventually anyway?".

    If you are uncomfortable about taking biologics, talk to the rheumatologist about what else you could take instead (eg DMARDs), and ask them why they are recommending the biologic.

  • Good morning :)

    I'll be 28 on Monday but was diagnosed at age 25 (though my symptms started when I was 24). I guess that qualifies as young :D ? I had severe RA and after failing to control it on MTX and Hydroxy (and steroids, NSAIDs, pain killers and al that) I was put on a biologic (Simponi) along with Leflunomide and low dose Prednisolone. This combinaion is fantastic - I am now in full remission.

    I do understand your worries about biologics though - I refused them for 3 months until I pretty much lost mobility and was so full of steroids I thought I was going insane! I'm grateful my rheumy insisted on me taking Simponi but I know I am extremely lucky that it's working so well and that it started working so fast (within 5 days of taking it, my symtoms had petty much gone).

    I hope this helps somewhat - though I've no idea what PML is and don't know much about Rituximab. I just know biologics gave me my life back.


    Christine x

  • Trouble is that everything is chemicals and yet we put them in our mouths all the time. Allergy is a consequence of chemicals not being liked. As others have said you do have to balance up what to do. otherwise one would do nothing and eat nothing nor drink even water. Write down a list of pros and cons and take that to the GP for a chat. If you take the list you will not forget anything. Talking to a group like this is also helpful as is messaging privately anyone who can help here. None of them would say no, they are a delightful bunch. Sending hugs.

  • I was diagnosed with full blown RA at 23yrs, I have had type 1 diabetes since the age of 6yrs I'm 49 now, when I was diagnosed I went on gold injections that was the nearest thing to the biologic treatment nowadays. I was nursing at the time, after being on gold injections for 2yrs and then I went into remission, I stayed on sulphsavazine and pain relief, I carried on nursing up until 7yrs ago when I had a flare up and started on my rd to different biologic drugs, I was also diagnosed with fibromyalgia, I've other health issues too.I had to be medically retired off from nursing device due to safety for me and patients.

    After 7yrs of a bad flare up and my third biologic drug things are beginning to settle down.

  • Hello, I'm afraid I don't know much about rituximab but I wanted to say that I understand what it is like to be a younger person with RA. I was diagnosed at 21, I am now 25. PM me if you want to talk. :)

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