Have I the right?

Hello everyone, Have I the right to ask to be given Tysabri? I am relapsing right now and each relapse seems to be harder to recover from. I tried Betaferon but it didnt work for me. I have researched all the other DMD’s but do I have to wait to be offered them? Or can I request them? Thanx, Mel xx

im sorry i cant help on this as i dont really know about dmd’s, but im sure there are alot of others who can give you all the help and info you need, have you got a ms nurse? would that be worth a try to ask them?

Yes I do have an MS nurse and I have an appointment with her tomorrow. I find her rather intimidating and abrupt however which is why I need to know my rights. xx

ok i can look it up for you and let you know what i find out if that would be of any help?

Yes please xx

ok, here goes, it says that you can ask your doctor to put you on tysabri or other dmd’s and if you dont get along with your ms nurse you can ask to see another ms nurse, i hope that helps a bit

Hi Mel, I think (dont quote me) that it all depends on funding and if the hospital have a space for you and things like that. I was offered tysabri when rebif wasnt working for me, didnt have to try another interferon just straight to tysabri. but i imagine every hospital in every trust is different.

easy for me to say - but dont be intimidated by your nurse - just say you want to explore all your treatment options - its her/his job to support you not to intimidate you. and the worst they can say is that ty isnt an option for you.xx

Of course you have the right to ask.

Whether Tysabri is offered depends on whether a person meets the technical prescribing criteria, though. But I cannot see any possible harm in asking the neurologist to explain where he/she thinks you and your MS stand in relation to the Tysabri criteria.

Alison

x

Hi mel, I would try to get a new nurse if that is possible. I had a horrific experience with my last ms nurse, am still of the opinion she isn’t fit to practice, but I stood up for myself with the consultant and was assigned to a new nurse who is absolutely amazing. Don’t worry about hurting feelings or being seen as a complainer… You need to do what is best for you and having a good nurse is a real help with ms

i am of the opinion that people with MS should be able to choose for themselves. I know the NHS has a criteria for dmd selection but i feel that neurologists dont have enough evidence to base their descisions. They have no way of knowing how each drug is going to effect your disease and people should have their own choice in what i think of as a lottery type system.

After just over a year of having MS i just dont see how my knowledge of this disease is that much different from the proffesionals, especially in a field where too many answers are simply not known and your own friend is trial and error