Forum

Taking Gilenya at night - feeling stronger

I’ve been on Gilenya since November and was getting a little frustrated that, whilst I haven’t had any major side effects apart from the odd dodgy stomach, I’ve also not made any further progress with my walking since being on it.

I know that DMDs don’t fix the damage already caused but up to that point I was improving a little bit each month and had hopes of being able to walk a reasonable distance again. I did see a physio from January to April and worked on my balance and I’m back to yoga classes to increase my strength so felt I was doing all the right things but still found that after just 10 mins walking I was fatigued, my feet were numb and my legs had nothing left. I could force them to keep going if they had no choice but it would then take me several days to recover.

I recently joined the Gilenya Facebook page and noticed that several users said Gilenya caused fatigue in them. Fatigue is my constant enemy so I hadn’t noticed any difference mentally but I wondered if it was affecting my legs. Several users were taking Gilenya at night to counteract any side effects so I thought ‘what the heck?’ and decided to try it.

I feel more mentally alert during the day and my legs do feel stronger. Then came the real test. I rushed round quickly enough this morning to walk to work and didn’t arrive looking like a wreck!! That’s the first time for well over a year that I have walked to work and not needed 10 mins to recover. I could still breathe normally coming up a very slight hill! Woo hoo!!

Now I just have to see if I can make it home. Since last year, the return walk is usually a hoot! The last 100m or so is a real endurance test with my mantra being ‘just one foot in front of the other, you can do it’! Then I get the giggles when I wobble everywhere and I realise that I look drunk.

I’m expecting better things today …

Tracey

Glad you had a good day Tracey, long may it last! I take my gilenya at night too, as otherwise I’m incapable of anything! Amazing how much difference just taking it a bit later can make! Keep on walking…:slight_smile:

Thank you. The walk home was an improvement although my left foot still went numb and a bit stiff and wouldn’t come off the ground much half way into the walk. At least one leg behaved itself though. I suppose the left leg is still damaged from the last relapse. The left leg was the last one affected and it was a year ago but it did take the right one about a year to sort itself. I will persevere in the knowledge that taking the tablet later in the day does make a difference :slight_smile:

Tracey x

I’m sorry to hear you had problems with Gilenya. I’ve been on Gilenya for more than two years, including being part of a clinical trial. I didn’t have any side effects apart from neuropathic (or is it neurogenic?) pain in my face, and some respiratory issues, early on in the trial, and that cleared after a few weeks. Gilenya has made a huge difference to me. I was on Betaferon, but I was still relapsing and the drug was causing depression (which I didn’t realise until I came off it!).

It’s good to hear that you’ve found a way to deal with the side effects. I hope they won’t be a permanent fixture in your life.

Great news Tracey… Hope the walk home goes well xx

Ha just realised you. Moments on the walk home…sounds like it was a successful day x

I haven’t any problems as such. It was just a light bulb moment when I tried taking it at night and realised that it did make a difference. I was already feeling much better since coming off Rebif (again I had’t realised how much of an effect that was making to my cognition).

I’ll continue taking it at night and continue working to strengthen my left leg. I think the right one is almost back to its old self now so I still have hope for the left one …

Tracey x

Hi new to forum.Started taking gilenya 10/06/14.When will i start feeling the benefits of it.And still got fatigue.Thanks for any help

hi there blister. i sarted taking gilenya on the 23rd of july. a week and two days ago . however, in that short time im suffering side effects. dizziness, vision probs, upset guts…fatigue…sore eyes, iredness

how long will it b4 these disspate?

did u take gilenya t nite,staight off

iv noticed that its heping more thanthe beta-interferon 1a was.

hope u r well

cat x x x x

hi there, ive started to take gilenya recently instead of betainterferon 1a. was on 23 july wen i started the drug. im suffering side effects, and was wondering how long these might last?

ive dizziess, vision probs upset guts,sore eyes,tirednss,fatigue,blanc pros…

im hoping not long lol

the drug is helping tho

Due to start Gilenya in two weeks changing over from copaxone and terrified !! Any positive comments welcome ?

Hi gaz

All been good for me on gilenya and has been for about 2 months. Had rotten time on their. Hope all goes well for you, fluffyollie

What were you on ?

sorry- wrote it when knackered. was on rebif, which i didn’t get on with… found gilenya much better

Hi There

I am about to start Tecfidera. Is there anyone else taking this?

Thanks

Andrea

Yep, there’s quite a few of us taking it, there’s a number of threads kicking about.

I was going to say, “stick tecfidera into the search at the top of the page to find the threads” But I just tested that and it “yielded no results”, so maybe not then!

There are a number of threads about it though, honest!

That’s great, I will have a look for them.

Thankyou!

Hi all- anyone on Tizanidine ? not doing anything for me-started off on 1 x 2 mg tabs a day, gradually inc up to 9 tabs daily but did not see any benefits too the stiffness/heavy feeling in my legs . Hate taking any medication if i dont feel its helping so slowly weaning myself off them still taking Baclofen but not sure if its helping much- only good at making me feel sleepy all the time.

Doctors struggling to come up with any other medication- tried Pregabalin no benefit and also Dantrolene which gave me the runs !!

Willing to try anything to hopefully let me keep on working to pay the bills !!

Andrea D - start a thread asking for tecfidera advice so that you’ll be more likely to hit your target audience.

Larkyfisherman - i didn’t find tizanidine helpful. it’s a right pain in the bum trying to find the right meds.

good luck and happy new year

carole x

Im starting Gilenya today and been doing all kind of research on the medication and took an interest to everything people has been saying on this website