Am shortly to start on Rituximab as everything else has failed.

[Maximumm]

Was ok with it until I heard and read about PML which is obviously very frightening. I know the odds of me getting it are 1 in 20,000 but they do not strike me as good odds. Can anyone give me their thoughts/advice or opinion. I would be very grateful for some input as although I dont really have an option (my medical history is complicated and Rituximab is the only option for me), would welcome any info. Many thanks.

[Tillytop]

Hello Maximum

I completely understand how worrying these lists of potentially serious side effects can be. I am probably one of the word's worst worriers but my attitude these days is that I would rather be as well as I possibly can be now, rather than miss that opportunity on the basis of something which is statistically very unlikely to happen. When I started on Rituximab, a year and a half ago, I was very nervous, having had to stop two previous biologics because I became allergic to them. But, so far, I have been absolutely fine on it and, although the Rituximab took a good while to get going, it is now really helping me. The other thing which gave me more confidence about Rituximab was that, unlike some of the other biologics, Rituximab isn't (or wasn't when I last looked) flagged as a "black triangle" drug on the Medicines and Healthcare Regulation Agency (MHRA) website. As I understand it, this means that it is considered to be a "safe" drug whose side effects are well understood. This in itself gave me more confidence. The other thing which I find comforting is that at my hospital, anyone who fails on Humira, Enbrel or Infliximab routinely moves onto Rituximab (I think that is in line with current NICE recommendations) and I don't for a minute believe that would be the case if the more serious potential side effects occurred often.

I don't know if any of this is helpful Maximumm - but I do hope that you feel able to try Rituximab and that it is helpful for you. As I have said already, my Rituximab experience has been a positive one so far and I have met others at the hospital who have found the same. One lady I met was happily going a year between infusion cycles with no problems at all!

Thinking of you - and if you do decide to try Rituximab and have any questions, please don't hesitate to ask and I will do my best to help.

Tillyx

[Maximumm in reply to Tillytop]

Thank you so much for taking the time to reply. I take on board what you have said and am reassured by your experience. Will talk again to my consultant on 7th Feb and see where I go from there. Will definitely come back to you after I have spoken to him as I am sure I will have more questions.

Thank you once again and happy new year

M

[earthwitch]

Probability is an odd thing, and sometimes what seems scariest actually isn't the most likely thing to happen. I think with things like the anti-tnfs there are several ways of looking at it. First, that the more they study these drugs and the more people that have been on them, the more they are finding out that actually the risk of serious side effects is incredibly low and they are much safer drugs than a lot of other more commonly used drugs. The next thing is that once you are on these, then if you do report anything odd it really will be taken seriously and investigated properly. Also some of the more serious side effects go away again once you stop the meds.

The other thing to realise is that if you don't get the inflammation controlled then potentially you could be opening up the possibility for some of the rare but very serious complications of out of control disease - things like secondary amyloidosis (which is a whole lot rarer than it used to be just because folk are now getting RA treated better than every before), cardiac complications, kidney complications, etc. So the "side effect" risks of not treating your RA properly are probably at least as bad if not worse than the very rare possibility of serious side effects from the anti-tnf treatment.

But, in the end its your call on it. I'd just encourage you to weight up the benefits at least as much as the risks, because for a lot of people anti-tnf drugs have really been miracle drugs that have given people their lives back.

[Maximumm in reply to earthwitch]

Thank you so much for taking the time to reply. I appreciate it and will take on board what you have said. Its good to get other opinions. I am seeing my consultant on 7th Feb so will see where we go from there.

Thanks again

M x

[earthwitch]

I should add too that while in the UK anti-tnfs tend to be used "when everything else has failed", that isn't always the case in other countries. Where money isn't an issue these drugs are often used as the treatment of choice very early in a treatment plan, and without having to go through years of trying different combinations and doses of DMARDs.

[helixhelix in reply to earthwitch]

I've been investigating this, as may be moving country, and it's not that straightforward. Yes, UK does have a rather complicated process to change from traditional drugs onto biologics, but it isn't automatic elsewhere either and most places still start on MTX. And as cost becomes more of an issue either for health funded via insurance companies or public healthcare, then I think we may find similar processes appearing elsewhere. Places where money isn't going to be a consideration in healthcare are I think going to be increasingly rare.

(By the way, I tend to think that DMARDS is a generic term for all the drugs that actually alter the processes, whether the trad ones or newer ones. But the newer ones are classed as Biologic response modifiers as a different type of manufactured protein, and of these there are the anti-tnfs, the IL's and then things like Rituxi which is a monoclonal antibody. That's just me being picky I know, but I think it important that we try to be accurate amongst ourselves)

[helixhelix]

hi Maximmum, I haven't been on Rituxi but it is one that I read up on and I appreciate why you're worried as PML is very scary. The advice and experience others have suggested all sounds helpful and I can't really add to that. But I don't think that a 1 in 20,000 risk is such bad odds. Your odds of having a heart attack, stroke or cancer are much higher - I think about 1 in 50 - so it is all relative. I hope you have a good discussion with your consultant later this month and feel comfortable with whatever decision you make. Polly

[Maximumm in reply to helixhelix]

Polly, thanks very much for replying and reassuring, your odds theory has made me feel better. Will see my consultant and see where I go from here.

Thanks again M