Continue with Gilenya or not?

[Gava]

The day after the observation I began exercising as normal (I do heavy weight lifting 4 days a week). After the exercise (centering legs, with squats as primary exercise) I felt extreme fatigue, like I've never felt before. I had no energy at all and was very, very tired. The next day after, I went walking with my girlfriend, visiting friends etc. After walking less than half a mile I felt that I could barely walk any further. I dragged my legs forward. It felt exactly like another relapse had struck me.

I spoke with my neuro about this and he then told me something like; -well your body is reacting due to the medicine bla bla… My first thought was “couldn’t he have told me to skip exercising in the beginning?”.
However, he told me to continue with the medication by one pill every third day and to skip exercising for 6-8 weeks. I skipped it for 2 weeks and tried it on again to see how my body would react to it. Conclusion: no improvement at all. What was supposed to have happened after 6-8 weeks? I mean, I still have sex and there was no comment about that.

Since I began taking this medication I feel like my capacity of movement has dropped by at least 50 percent. I can barely walk to the grocery store without feeling extreme exhaustion in my legs when coming home. This was never a problem before Gilenya.

In Sweden, where I live, I’m the third person being dealt the option of taking this medicine. I have no confidence in my neuro since I feel like he wants me to continue with Gilenya no matter what (guinea pig?). I do want it to work out for me and i really give it a try. But, when do you say stop, this is enough?

Will the deterioration in my legs fade away and go back to normal if I stop, or when I have had Gilenya for a while? This is the question I'm dealing with that concerns me the most.

Has anyone who regularly exercise experienced anything like this?

[isamadjul]

I haven't start Gilenya yet but I have been told by my MS Neuro and by doing research that for the first month or 2 that you might be very tired and unable to do what you normally do.

That might be why your Doctor said to take a 6-8wk break. Following Doctors orders are not my strong suit but when starting a new drug I try... to follow orders.

Its up to you to decide to stop this drug. All we can do is tell you what we know or have experience with. My advice is read what others have posted under the pros and cons thread of Gilenya It might help you find the answers you need.

isamadjul
(allyson)

[GandalfRA]

I do heavy weight lifting 3 times a week (love to do full squast). And today it's been a week on Gylenia. I can't go to the gym. I am very tired and sleepy. And believe me, to stop me from going to the gym it requieres more than being MS tired, I think we have a stronger tiredness than MS now, it's Gylenia tiredness. I eat the MS Recovery Diet and behave like a monk, don't drink and smoke anymore and eat my greens, fruit and veggies. It's the Gylenia beating the Sh... out of me. Still, I believe we have to try to endure it, we may overcome these symptons soon. For what I read lot's of people would want to be in our place and have a chance of taking this medicine. I will keep taking it and report when I get back to my pre-Gylenia state.

Good luck.

[empirerecs]

I am so sorry you are all feeling this way, it sounds like a reaction to G that isn't one of the most common ones. I did not have that type of reaction at all. I've been able to do everything I was doing and even more now. I've been on it since July 5.

Have you talked to a Gilenya Nurse? I had to call because my hair started to fall out and I wasn't sure if it was a side effect or not. She was helpful and she had not heard of that and but she put it in the database. My other docs do not feel it's related.

the neuro that started me on G was part of the initial studies and speaks at seminars about it and he never mentioned what you are experiencing and he knows I also work out.

I don't know what to say if your current neuros aren't taking it seriously. If I was having problems with any drug and my doc didn't take me seriously I would get a second opinion (which I am currently doing because of a screw-up on meds my psychiatrist gave me that sent me to the ER).

Good luck and I wouldn't wait too long, you sound like you are in wonderful shape and that's so good for you and helping with MS symptoms.

[Day11]

I take G at night due to the fatigue.

[TLC_31]

Should you continue? That might depend on your options. I had the option to fall back on Avonex, so I ditched Gilenya after 19 days.

I felt extreme fatigue and was told it looked like my soul had left my body. Although my observation period was uneventful, there were measurable effects on my heart in the days that followed. Even two months post-Gilenya, I feel mild effects once in a while. I'd be concerned if you are noticing any effects on your heart along with the fatigue.

I think any new medication can cause side effects that will go away over time as you adjust to them. I know the first few months I took Rebif was awful with the flu-like symptoms and hot flashes. The decision is up to you and your doctor, but I personally would continue for awhile longer to see if you are able to adjust to it or not.

[SNCL2001]

G...not all it's cracked up to be??

Hey all,
I was kind of relieved to read some other post about gilenya making people feel like crud. I have been on this since April 11' 1st couple of months I didn't notice anything out of the ordinary except my hair was falling out a lot and my eyes were giving me some issue but since the holidays I can tell you I have felt horrible. I used to walk dogs, excersize (treadmill/light weights) within the first month I realized I couldn't do 1/2 of what I could do and now I can't do it at all.....I go to work, come home, help my son with his homework and bed. I walked my dogs this morning and I needed to lay back down before I could even get ready for work. I never had a huge fatigue issue before so I know this is all from G. I know it's to delay disability but what if the medication itself is making you feel disabled. Putting this all in words makes me realize I should be talking to my doctor......thanks for letting me rant.