I’ve just started on gilenya 3 weeks back, after spending the day in the hospital watching my heart rate, which did nothing but beat normal, which for me is very slow anyway, I was in hospital with another lady who’s heart had a little wobble, this is a normal side effect of the tablets, but her heart returned to doing its normal thing after half hour, she later went home like me with our precious tablets in our hands.
I’ve had no side effects from taking gilenya, and the puncher marks from the rebiff injections are finally disappearing
Good luck with your choices
I was on Copaxone but it wasn’t really working for me so my neuro advised me to change and my options were Gilenya or Tysabri. I’m JC negative so he left it to me to decide.
As my relapses were frequent but not severe I decided to go on G first and leave Tysabri as the “last chance saloon”. As I’m working full time and am a single parent, a monthly trip to the hospital for Tysabri wasn’t really practical or financially viable either.
I started G in October and it went fine. Heart rate went down at first dose and back up after a few hours. I felt tired and had headaches for a few days but after the first week felt fine. Liver function tests went sky high after a month so I had to start having weekly bloods and they settled down. Now I’m having monthly bloods just to keep an eye on things.
I’ve had no relapses and my symptoms are lessened. My sight has improved (I had optic neuritis) and most days my right leg is a lot better. I still have numbness and tingling in it but it’s not weak the way it was.
All in all, I’m happy with the choice I made.
I replied in some detail to your post regarding my experiences with Gilenya.This was almost a week ago.It would be nice to have it acknowledged.Presumably you read it,and found the website link useful?
It certainly makes me less inclined to reply to people seeking information /asking for help,if they don’t have the curtesy to acknowledge or thank the replies they get.
Brenda.
[quote=“brenda28”]
I replied in some detail to your post regarding my experiences with Gilenya.This was almost a week ago.It would be nice to have it acknowledged.Presumably you read it,and found the website link useful?
It certainly makes me less inclined to reply to people seeking information /asking for help,if they don’t have the curtesy to acknowledge or thank the replies they get.
Brenda.
[/quote] Brenda, I would hate to think that anyone who was under a lot of pressure (i.e. most of us) would hesitate to ask for others’ input in case they unwittingly got into trouble with the etiquette police! I really do not think that’s the kind of deal it is on here. Alison
You’re entitled to your opinion.I stand by what I said.Thanks for calling me ‘the etiquette police’.I’m not,by the way.I’m just expressing my opinion.
It’s plain rude to solicit advice from others and then not bother replying.
Brenda.
Brenda I apologise for the no reply. My head is all over the place, I appreciate your advice and I’ve been taking it all in. Got my appointment In and it has made things all the more ‘real’ though every step is a reminder. I have been on but forgot about this post I can’t decide if it’s the ms or just the stress of everything. Your advice was gratefully received. I think manners are important. Now I’m going to bed I’m sore have the flu and would like to stay in bed a month. Unfortunately that won’t happen.
Thanks everyone for your input. A week and a half and the scan will be done. Just want the next month to pass so I can start to know whete I’m at in life. I need to sell the marital home. My ex initially put my daughters 1st birthday as the date it had to be done by but not sure if that still stands. I’m not really able at the moment. Mum and dad are in the middle of a huge renovation and I need to find a bungalow relatively close to my parents. I’ve the decision on my ms to make. Just now I would like to be kidnapped and taken to either a log cabin in the middle of trees, with a stove and no neighbours or people. I’m sad about moving I love my house it was made into a family home after the last people didn’t do much to it. And I’ve all the memories of taking the kids home here when they were born. I wouldn’t say in depressed just now just sad, scared with so much to do I don’t know where up start. Sorry about my moan x
Hi em,
feeling a bit guilty now.This has happened before of course,but for some reason it really got to me this time.
It sounds like you’ve got a lot on.
Good luck with your decision.
I hope you manage to rest and relax a bit this weekend.
Take care,Brenda x
Hi Brenda I should have replied just didn’t get round to it. My relaxing weekend turned into making mountains of food for the kids to freeze and visiting my granda who’s pretty ill at the moment, but he squeezed my hand and was smiling at my daughter so it was nice x Have a good weekend x
That’s a shame about your grandad.
I’m a big fan of batch cooking.Well done getting that sorted.I hope that this weekend coming is a bit more relaxing for you.
I had a quiet weekend,thanks.
Brenda x