Switching to tablet

Everyday living
1

Hi All,

After my recent major relapse which nearly a month in I am still recovering from I have been told that intaferons are not working after being on 3 different injections over 5 years. I have been suggested for the new tablet. that gives me deep joy about not sticking myself regularly but a unknown about the tablet. I could and have looked at the stuff about it but thats what the proffesionals say is there anyone here that has tried it or is on it. and what is your experience of it?

2

Hi

Is it Gilenya? I relapsed while on Rebif so I’m switching to Gilenya. Starting on Friday. Not sure how much you know about this treatment, but I’ve researced it a lot. I should have a PhD in immunology!

I needed to have an ECG and an x-ray as well as blood tests for various things (including resistance to chicken pox). They were all ok, so I’m going into hospital for my first dose on Friday. They will monitor my heart and blood pressure for 7 hours as the drug initially causes your heart rate to drop but it should go back to normal after a few days.

I read a lot about the increased risk of infections and other things related to a supressed immune system but I decided that the benefits outweighed the risks. They will keep a close eye on me anyway apparently.

I was also offered Tysabri but the risk of PML was just too scary for me.

I’ll let you know how it goes on Friday and afterwards. Feel free to direct message me if you like.

All the best

JZ

3

just to say am loving the N.C.F.C flag!! xx and sorry i have nothing useful to add! :0) but let us know how you get on xx

4

Thanks JZ,

I already get blood tests regular for LFT’s but was not aware of more infection think they called it fingolimod the one i having bt it may also be known by another name.

Agree with tysabri i could put up with infection, it was the word fatal in front of it that got me.

And yes JZ also feel free to PM with news or bad effects.

5

Hi,

The following link has a number of diaries that people taking Gilenya have completed. I think, from memory, one of the contributors had been on it for 5 years, so quite a bit of information.

http://www.ms-uk.org/index.cfm/gilenyadiaries

Hope this helps.