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gijs
5 months ago

What do you mean? It’s a DMT, it reduces the numbers of relapses/makes the relapses more bearable.


mlgilber1
5 months ago

Hopefully it slows progression.


nutshell88
5 months ago

I read on the @mlgilber1
@gijs
I read on the drug’s prescription in gelineya studies cut down the number of attacks by slightly more than half
And as a consequence to reduce the number of sever relapses
And it may show dirsect beneficial effect on certsin brain cells ( neural cells) repair it slow progression

Wish i could know more about that


cameron
5 months ago

Apart from reducing relapses, gilenya slows down brain atrophy.


nutshell88
5 months ago

Great @cameron 😊
They didnt book me any appointment or blood test this month
So far i dont feel i need it and hopefully will never do for a while
Now i can feel relieved to spply for any better job i used to be a bit worried about relapses before treatmfnt


cameron
5 months ago

You shouldn’t be worried about anything. Now you’re on treatment, you can let your medical team do the checks and monitoring. They’ll soon tell you if there are any issues. Time to get on with your life…….


strictlysoca
5 months ago

I agree with Cameron. You have delayed taking a DMT and now you are taking one of the most effective. The benefit is that you will reduce inflammation by not having relapses which will allow the plasticity of the nervous system to make recovery of function more of a possibility. Fatigue will also improve because of reduced inflammation.

You might be able to exercise more which will help you recover function. I have gone from not being able to walk a mile to back to long hikes by staying relapse free for 3 years as of this week on Gilenya. I hope it works as well for you as it does for me.


cameron
5 months ago

@strictlysoca – oh how envious I am of your long hikes! I can manage about half a mile outside but need walking poles if the terrain is not completely flat. After that, my ruined (secondary-damaged) knee starts hurting, game over. The only exception is when I’m on Queen Mary 2. Three laps of their teak promenade deck is 1.1 miles and I’ve been walking that every year since 2005. My latest record is seven laps, but I was wrecked afterwards! xx


nutshell88
5 months ago

@cameron
@strictlysoca
I over trusted this treatment maybe or maybe not
Yesterday I kept dancing non stop from 8 till 2 am
I even sppined around more than once
And before all that i did laser treatment for all body

I feel since i wasnt getting relapses so often it has to be way less now

It has increased my confident i must say
In my strength i mean


mmhhpp
5 months ago

I can guarantee you it does not stop progression
@mlgilber1/


vixen
5 months ago

Keep your emotional strength up @nutshell88. Dancing 8 til 2? I’m not sure I’ve ever done that, even before MS! X


nutshell88
5 months ago

@vixen
Lol i went mental


nutshell88
5 months ago

@mmhhpp how do you mean
Would it stop atrophy
And could it stoo rrms from turning to spms in the upcoming few yrs


mmhhpp
5 months ago

I was on gilenya for 7 years. It was good at stoping relapses and i know it because two times i stopped i suffered the rebound effect .

Unfortunately it did nothing for me , and after four years I started declining , very fast in the last 2 years. Now edss at least 7.5 wheelchair-bound and unable to stand up or walk.

People fear relapses but you should fear even more becoming SPMS I still cannot understand the emphasis on stopping relapses when more or less you can get over them but nothing can stop spms, my opinion, i wish i were wrong.

Now I have been on cladribine for 4 months and it seems things are slowing down…..we will see..


mmhhpp
5 months ago

mmhhpp
5 months ago

@nutshell88

But i also have a friend who has been on gilenya for 7 years at least and she’s doing great I think there are different types of ms some do well and some don’t…..


nutshell88
5 months ago

@mmhhpp
I wrote hospital report about my state in another post
Would you please have a look
And tell me do u think gelinya might help stop progression
Remember ive had MS 14 yrs from age 17 now im 30 so its 14 yrs without treatment


mmhhpp
5 months ago

@nutshell88
My friend also has ms for a long time in her twenties. It works for her. I am no expert so i cannot say….better ask ms dr . There are not many options.. I think is better any therapy than nothing….


mlgilber1
5 months ago

@mmhhpp I never said stop progression. Usually the hope is that whatever DMD a person chooses will slow the progression, but everyone is different and all the DMDs work differently for everyone. I’m sorry yours has progressed.


strictlysoca
5 months ago

@nutshell even when MS knocks me down I danced in my chair with Wi fit Just Dance 😀 keep dancing 💃🏼

@cameron I am the Don of two stick walking. I couldn’t do it without my trusty Nordic style walkers and my lovely gentleman caller who picks me up from some comedy falls. We have plenty of rests handily on “Compo” benches as we call them being as we are from the Land of the Last of the Summer wine and there’s always one or a dry stone wall to perch on and enjoy the view


cameron
5 months ago

@strictlysoca – re: the poles. I did a holiday in Switzerland a few years ago and it was incredible how much easier the walking was. Wide, properly surfaced and perfectly flat footpaths up mountains, signposts and benches every few hundred yards and every second person had poles. I felt quite nimble!

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