DOES ANYONE KNOW ABOUT THE CHANCE OF GETTING PML WHILST TAKING RITUXIMAB THANKS XXX

[bigmommy]

[Hidden]

Yes, I've heard about it. However, I'd already started my Rituximab treatment before I found out. I wasn't told I found out through my own research.

It is extremely rare I believe.

There is serious risk and reported side effects with any drug, we just don't always now about them they only tell us the more common side effects.

Nobody knows how they will react to any treatment they have until they actually take it.

mand xx.

[Hidden]

I am on rituximab and have just googled this. It seems that all immuno suppressed patients are at some risk of PML. ie if you are on chemo, steroids, infliximab or have AIDS etc.. It makes grim reading doesnt it. Apparently its fatal usually within 6 months.However if your immune system improves it can improve the survival timeline a bit. i also read in 2010 the first pateint was treated successfully with antimalarial drugs which enabled the body to rid itself of the the fatal virus. I cant get a feel for the relative risk with each type of immuno suppressant drug though. As mand says its prob breaking ground re rituximab and something that is being stored on a register somewhere. I found it a bit disconcerting as i have dreadful muscle fascilation or involuntary twitching also a symptom of MS? but hope this is ok because I think i had it before i took an ritux infusions. Thanks for raising this its brought something new to light for me. Hope all is ok with you.

fiona

[Hidden in reply to Hidden]

Hiya fi, hope your ok.

mand xx

[Hidden in reply to Hidden]

Hi Mand

do you know the risk of PML with rituximab? ridiculasly I dont remember reading about that little nasty when I was reading all the other possible effects from the drug leaflet and the doc never mentioned it

loads of love

fi xx

[bigmommy in reply to Hidden]

Hi fi i hope that i havent given you any distress i was having a panic and i am sure if the numbers of pml where high enough to worry about we would be advised of this xxx

[rheumatoidymummy]

Sorry - maybe a daft question but what's PML?

[Hidden in reply to rheumatoidymummy]

It's best to google it or google, Rituximab PML.

Wouldn't want to scare any others already taking it!

mand xx

[bigmommy]

Thankyou every one for replys i diddnt mean to scare any one i was having a panic attack as i have been asked to take part in a study to compair anti tnf to rituximab but i wont know what i will be on untill the trail statts the prof says its like the toss of a coin but in the info he gave me it mentions the risk of pml and i just scared my self and i hope that i havent made any one panic pml is very rare aparently but i cant find any actual figures but on the other hand if ra get a hold that can be Quite nasty to so we have to do what we can to fight our condition thank you to u all and sorry if i caused any distress xxx

[Hidden in reply to bigmommy]

Yep, worst of two evils really, the RA itself or the drugs we take for it.

Hope the trial goes well.

Take care and good luck.

mand xx

[bigmommy]

Thanks mand look after self xxx

[Hidden]

HI there

Yes I was told about this what is described as 'a very small risk' on either my third or fourth dose of Rituximab. I guess that given the drug has made my life so much better than it was before and I was becoming increasingly unable to do anything or have the desire to do so, i have decided to take the risk.

You posting this though has reminded me to tell my partner again too as i know once i have had my infusions I have much more trouble concentrating and tracking things for 3-4 weeks so we probably need to be aware of really monitoring this on each occasion.

I guess the thing to remember is that RA, any of the drugs and Rituximab all have a number of risks and it's weighing these with the benefits.

Hope all goes well for you

Skippy