I just needed to share my good news and I could not think of a better place. I have mentioned before in earlier posts I do not live in the UK (I am based in Switzerland), but today I went for my first monitored session of Glienya (the tablet drug). I spent 6 hours in a doctors surgery wired to a drip and had to record my blood pressure and pulse every 15 minutes (I suspect this is to stop me sleeping as they wanted real results, not my sleeping version), but it was worth it. Final result (after 2 ECGs) was the all clear to continue on the tablets so no more injections.
My other half is really supportive, but she cannot really understand the elation I have tonight at the thought of no more injections. For those of you out there that have to do them (I administered my own) I am sure you will understand that I am currently on cloud 9.
Just as a point - this email is not to gloat, its just that I am really really happy and just wanted to share it with people that might understand exactly why. Fingers crossed there are no future complications (I don’t expect any) and tonight would have been injection night so another reason to celebrate.
So glad it went well for you today. Keep us posted on how you get on with the new drug.
It has only recently been licenced here.
I am on rebif and would welcome an oral drug but do not meet the criteria for Gilenya. I am interested in the new drug BG12 but is yet to be licenced here and i have no idea if i will meet the criteria or not.
I wish you luck. I will now go and get my rebif out of the fridge!! lol!!!
One thing I learnt recently is there is an alternative to the Gilenya tablet. Not sure of the name, but has been used to treat psoriasis over the last few years and they discovered it has the same effect for MS as Gilenya. If you are having issues, ask your neuro about it - they will know (or be able to find out) more.
No more jabs is the main reason I’m trying LDN (you take it orally) - sadly though, it doesn’t seem to be working, so I’ll probably go back to the hated jabs later this year. Please keep us informed of your Gilenya experiences.
but i don’t think there are any other licenced oral drugs available here yet. I think the one you are speaking of is the BG12 which i mentioned earlier. I may be wrong though! Merk Sorono were doing trials on an oral drug but it was not given a licence here.
Luisa - sorry you have not had any benefits yet from LDN. I think there are new oral drugs on the horizon so maybe you wont have to go back to injecting. I hope not anyway as i have spoken to you before and remember how you hated it!
I dont have a problem with the jabs but if i had the choice i would go for the oral one.
Thanks Teresa - my MS nurse is also aware how much I detest self-injecting, so hopefully if I stop LDN, there will be a non-jab alternative - I’ll do it if I have to. The LDN has until September to make a difference, that’s when my 12 month trial of it will end, so there’s still time - it’s not looking likely now though
I’m really pleased for you knowing all you have to do now is swallow a pill. I have an injection every week but it’s not for MS but AS, so I can relate to your joy. Long may it continue and work for you.
