Fingolimod - MS oral therapy

bizmark

might go down that route was told last week though that i could be waiting till april to see the nero even though i havent been on meds now since november :rolleyes:

nedsgarden

U.K. seems to be going ahead.


http://www.bbc.co.uk/news/health-17399056

hdunne

wow thats brilliant that NICE have approved. I started on this drug last week even though not approved in ireland yet. i was nervous but its great, zero side effects as yet, tablet once a day, nurse was great, fingers crossed i'm relapse free foe some time. hopefully won't be long until approved and available here in ireland.

kiwilemon

sorry to be so personal but did your wife start on the gilenya and how is it going

fergal.b

kiwilemon wrote: »

sorry to be so personal but did your wife start on the gilenya and how is it going

They said it might be going ahead in April so fingers crossed.

fergal.b

We got the call to start the new treatment next tuesday then she got the call to go to the mather on tuesday to get her gallbladder removed after 2 years on the waiting list "what are the chances" :mad:
I hope the place for the treatment will be passed on to one of you.

byhookorbycrook

ah blast, can she not do both?

fergal.b

byhookorbycrook wrote: »

ah blast, can she not do both?

No, they said the drug would be too hard on the system, this is her 13 th abdominal op "nothing to do with MS" so with all the scar tissue they can't do key hole. There is a 10 week recovery time for healthy people let alone someone with MS We will just have to wait and see. Some people just can't seem to catch a break but she's a fighter.:)

byhookorbycrook

Makes sense, but totally infuriating. Hopefully she'll get sorted soon.

bnt

Anyway, the EU regulators are still supporting Gilenya with some changes to the labelling w.r.t. heart conditions and monitoring after the first dose. Only people with existing heart conditions have any real cause for concern, in their opinion.

femur61

Great news, I've RR MS and been on injections for 11 years. No horendous side effects from the injections but injection sites still very sore. I haven't deteriorated at all and minor problems but unfortunately no one knows if I am one of the lucky ones where the drug is working or do I have a fairly subtle form of the disease.

byhookorbycrook

That's the problem with MS,isn't it, we take all these pretty awful meds,hoping they are actually doing something!

femur61

Are there many people getting this? I know it is not funded my the governemnt yet. I got an email from MS Ireland yesterday and it was going to feature on Primetime. Did it? Would be great to get as I am finding the injections difficult now. My skin will get very bumpy when injecting and sore:(.

fergal.b

Hi femur61 it is going ahead my wife was meant a few weeks ago but because of her op it was but off for a bit, when I was down at our local pharmacy they told me that they had received her new drug and now have it in stock ready to go, hopefully in the next few weeks she will get started

hdunne

femur61 wrote: »

Are there many people getting this? I know it is not funded my the governemnt yet. I got an email from MS Ireland yesterday and it was going to feature on Primetime. Did it? Would be great to get as I am finding the injections difficult now. My skin will get very bumpy when injecting and sore:(.

Hi there, for me i got this drug from drug company as i was put forward as 'first line' drugs not doing the job for me! i'm sure its quite expensive so i don't see people going on this because of injection site reactions, etc. if the injections are doing there job they may leave u on them.

fergal.b

Back on track to start the gilenya in the morning she will be under observation for the day to make sure there are no side effects as she is still very week and in a lot of pain from the op plus her liver function test was a bit high from the pain killers and antibiotics, so fingers crossed all goes well.

fergal.b

All went well today with no problems the only side effects so far are a metal taste in her mouth but that should go, the nurse said there are 65 people in Ireland on the drug now and although it has been approved the funding is still not through.

femur61

Great news hope all goes well. i am going to see my neuro next month. I have been injecting betaferon for 11.5 years now. I am really begining to hate it, the injection takes a little bit longer and if I inject sometimes when the fluid is going in little blisters will appear while injecting. If I rub them vigorously they will go.

I know funding is an issue but I was thinking I will suggest to substitute the cost for current medication to Gilenya. I am running out of sites and really, really hate injecting so much I will put it off for days!

byhookorbycrook

Femur, have you talked to your neuro as to which would be better for you (hatred on self injection aside?)

femur61

byhookorbycrook wrote: »

Femur, have you talked to your neuro as to which would be better for you (hatred on self injection aside?)

Next month.

fergal.b

femur61 wrote: »

Next month.

It might also be worth asking can you change to smaller needles for the time been my wife got changed to microlance 3 yellow they were only 25Gx1"-Nr.18 0,5mmx25mm and they were a lot less invasive, it will depend on what type of injection your on of course but worth a try.
Best of luck.

fergal.b

Looks like Gilenya has got the go ahead from the HSE http://www.ms-society.ie/news/show/gilenya-funded/