Last reply 1 month ago
Copaxone to Gilenya

Hi!
It would be great to have some advice! I’ve been on Copaxone for 8 years relapse free! I had a baby last year and went through quite a lot of stress and my most recent scan has shown a small new lesion. My nuerologist has said he thinks changing Gilenya would be a good idea as it’s a better drug. However I’ve been feeling great – I would never have known I had a new lesion if it wasn’t for the mri!
My question is has anyone else made the change?
I’m scared to rock the boat as I feel so well so should I be considering changing?

Thanks everyone! X

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greasycanadian
2 months ago

Hi Vanessa,

I experienced wicked side effects from Gilenya – severe brain fog, nausea, GI issues, sleepiness – It did not allow me to work or have any sort of life. But that is just me….I would try it for 3 months, and if you have side-effects that remain, well at least you can tell your neurologist that you ‘gave it the good effort’.


vanessa
2 months ago

That sounds really tough! Makes the decision even more difficult as I feel so well now! Hope you’re on something better for you now!


jane_watts
2 months ago

@vanessa
Hello, I was on Copaxone daily injection
never an issue.
As regards Gilenya, I declined this treatment…..
You’re right ‘dont rock the boat’, if this is how you feel, listen to your gut instinct, from what I’ve studied Copaxone is a safe option out there.. never a negitive report that I am aware of & as always will stand corrected if otherwise.
Best of luck whatever you decide upon.
Jane 💜


vanessa
2 months ago

Thanks so much Jane! My gut is saying don’t rock the boat! I’m having another scan in 6 months fingers crossed no more lesions and makes decision easier!


rea
2 months ago

Hi @vanessa, I was on Copaxone several years ago and like you felt really well. I changed to Gilenya on advice of my neuro; I lasted 3 months.
However, there are people who have done really well on it, so take a balanced view . Good luck with your choice .


jane_watts
2 months ago

@vanessa
I back you 100% Vanessa, always follow your gut most times it’s the brain & body trying to help us with such massive decisions that are not always easy to make.
Hopefully your MRI results will be really positive for you to take on the world.
I recall being told some years ago by my nurse saying to me it was found to repair lesions. Now how true this is of today I’ve no idea. It seemingly was the findings then.
Good luck Vanessa.
Try not worry, you will make the right decision for yourself after your MRI.
💜


vanessa
2 months ago

Thanks so much everyone for your kind comments! They have really helped! Xx


cameron
1 month ago

I changed and have not regretted it. It was offered because I developed a sensory symptom, which although was trivial in the scale of things was proof (said the neuro) that the MS was active. The drugs work in different ways and the current thinking is that it’s best to hit MS hard. If you haven’t already done so, I suggest a look at a recent post on the Barts-MS blog. There’s now research findings about the length of time before relapsing-remitting MS enters the secondary progressive phase. The best outcomes (i.e. the longest that MSers stayed in the RRMS phase) were from people who started on the stronger drugs (inc. gilenya). The next best were people who switched to these drugs within five years of being on copaxone/beta interferon. People who stayed on copaxone or beta interferon fared less well and the poorest – unsurprisingly – were people who had never been on treatment. Obviously, a trial such as this isn’t the full story but it may be helpful when deciding. I agree with everyone – it’s got to feel right for you. xx


nutshell88
1 month ago

I refused treatments for 9 years

Few months ago neurologist said he found a small new lesion i must start Gilenya because they can not guess what thus lesion hides it might cause a disability specialy i had ms since 2004
I was feeling fine but I accepted
Gilenya has no side effects it feels like water

What upsets me is the way it work as they described and the fact its a treatment ._.
But noticed slightly bit improvement

Goodluck with it or without it


leogirl
1 month ago

@vanessa
I had a relapse last in 2013 and I was told that I needed to change medication as Betaferon was not working well enough. I changed to Tysabri and then to Gilenya and I have been relapse free since.
I have been on Gilenya since September 2016 and it is great as no more injections after 20 years. However it does lower the immune system so I have be careful if I get an infection. I have ongoing symptoms from my relapse but like most DMT’s it only helps stop progression. Good luck with your decision. Ann Marie X


alisonhd
1 month ago

Gilenya made me feel amazing after techfidera however it didn’t agree with me and had to stop it….good luck I’m sure you will make the best choice x


vanessa
1 month ago

Thank you so much everyone for your comments, it has really given me a lot to think about! I think the results for my next brain scan will help make the decision! I’ve got a one year old now so I need to keep well for him!


smack
1 month ago

A few years ago my Doc switched me from Copaxone to Tysabri. I then had a bout with Lyme disease and stopped Tysabri with taking antibiotics for Lyme. MS has progressed with lesions showing up on spine. Walking is bad as I need cane,walker and wheelchair to get around. Much better when taking Copaxone. Look at your health before changing. I started Ocrevus in December so jury is still out. New Nuero said pick a drug after MRI showed lesions on spine. So many choices . I am thinking that I should have gone back to Copaxone. I used it for 9 years and it kept me stable. Good Luck!!


nutshell88
1 month ago

Mind you if you stop gilenya without telling your hospital your condition might get much worse than it was before gilenya


kirsten_oakland
1 month ago

I was on rebif when I was first diagnosed and was on it for years and I did have a couple minor elapses but they gave me new lesions on my right frontal lobe and Horn. Then I couldn’t tell if my feet were hot or cold I knew something was happening but couldn’t tell what it was are they hot or are they cool anyway turned out I had yet another lesion so my Nero changed me to gilenya and I had to have a nurse and a doctor come to the house and watch me for the first 6 hours after I took my first dose everything was great gilenya has been great for me I’ve had no problems since and no relapse of any kind and I feel so much freer not having to do a shot. However you have to find an antidepressant that can be taken with the gilenya. They had me stop taking mine because it doesn’t go well with that medication I was on celexa. So of course I stopped but they didn’t give me anything to substitute it with. The withdrawals were crazy and it took forever to find a good one that I could take. The coming off the depressants was so bad I almost went back to rebif but thank God I can takeCymbalta and it seems to work really well for me.it did take some getting used to but I love the gilenya and I’m glad I did it. The side effects are absolutely none. I personally love it. Good luck and if you have any questions don’t hesitate to ask.


buitenmus
1 month ago

I had to switch from copaxone to Gilenya, since I did a new relapse 5 months after being diagnosed and starting treatment. It’s been 3,5 years now and for me gilenya really works. I have no relapses, and don’t suffer from side effects. So for some it really works. But I think you are right to doubt, I guess. 1 relapse in 8 years sounds not so bad, but I really have no knowledge. Here in my country we can only switch medication if we have 2 serious relapses in 2 years, so I guess here your ms is considerate stabile.
I just wanted to add some positive feedback on gilenya.

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