Forum

refused gilenya

Hi everyone

I started rebif injections last Decemeber but i only lasted until June because of a needle phobia i have had since the age of severn. My ms nurse told me i don’t qualify for gilenya because i was not injecting (errh) for long enough. On my first rebif injection by my nurse guess what i fainted then again 10 minutes later from blood test (hope this makes you laugh). I don’t know how i maganged to last 6 months, probably because i’m a positive person. I waited for tablet form of treatments since being diagnosed guess i’ll have to wait for the same time for stem cell

Hi!

There are 4 new oral therapies being trialled as we speak - so don’t worry!

I don’t know all the details but i do know about one of them - it’s called BG12 and it has done really well in trials. It should be available later this year. Hopefully you might be able to get this when it is licenced. They have trialled the tablet and i read that it reduces relapse rate by up to 50%.

I don’t know what the criteria will be yet. Take a look at the research bit on this forum for more information.

Gilenya is a second line treatment (severe rrms) when the first line dmd’s have not worked. Tysabri is an infusion which is also second line.

From what i have read BG12 is a first line treatment (not sure about the other 3). It looks very good and with quite mild side effects. It has been used previously for psoriasis treatment.

You may not have to wait as long as you feared!

Best wishes

Teresa.x

I have just looked myself and BG12 may be next year according to this site but i have read elsewhere it’s the end of this year. Oh well - whatever it is - not too long to wait.

Press on ms news and research at top of this page.

You will find ‘new treatments in the pipeline’ and tells you about each of them.

Happy reading!

Teresa. x

Thanks Teresa

I will have a browse later, i like the sound of 50% better than hearing 50cent ha. I have not seen my ms nurse for a while and have avoided using this site so i’m not up to date with tablet form treatments.

Thanks again x

Sorry to any 50cent fans