amys 11/04/17
Last reply 10 months ago
Gilenya

Hi, I have been on Tecfidera the last two years but due to continued symptoms and side effects my neurologist has suggested changing to Gilenya. I wondered what other people’s experience of this is? Thanks

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robinnutman
10 months ago

Hi I have been taking Gilenya for just under a year now and have had no problems have reduced my relapses and now have just had an MRI which showed no new lesions , Have found it easy to take, Hope this helps.


carolyn_cordon
10 months ago

I’m loving being in Gilenya. No relapses since I went on it. I do have various cognitive issues though.


melissa-g
10 months ago

I switched from tecfidera to Gilenya reccently also, no problems so far. Felt a little funny while my body adjusted to it but have been fine since! Was on Gilenya a few years ago also and the only thing was I started to get sick easily, so this time I plan to be extra careful!


arknat
10 months ago

Been on Gilenya last 1.5 years. The first dose with monitoring was uneventful.

But for a lowered/borderline lymphocyte count (ongoing) and an initial (2-3 months) of higher liver enzyme count which is now normal, I have had absolutely no issues with Gilenya and is very convenient to use.

I have had no relapses since start of Gilenya.
Brain MRI with contrast 7 months later to start: No new lesions
TSpine MRI with contrast recently (2 weeks): No new lesions

Good luck to you.


edwardskate
10 months ago

Same as above i did the same i went well for yrs on Gilenya but then i got shingles twice so my nero took me off it 😕


us-emma
10 months ago

I had a very poor experience with Gilenya.

In 2011 I was doing well on Tysabri but my PML risk was high. My doc switched me to Gilenya and I had 2 relapses in the next 11 months. I was put back on Tysabri despite the high PML risk and never fully recovered from those two relapses.

Subsequently learned I had sustained permanent heart damage from the Gilenya.

When my PML risk went through the roof in early 2014 my doctor refused me any more Tysabri. I was so desperate to stabilize my MS I traveled from the US to Germany for Lemtrada.

I was looking for a way to just not get any worse. After a few rough months of heavy fatigue my MS started to stabilize and then IMPROVE! I was stunned. MS never really improves- we get major relapses and might recover some of those losses back but this was totally new.

Things were improving that I had been dealing with for a long time- immense fatigue, cognitive problems, pain issues, jumping muscles, eye sight (my pupils had stopped constricting, and now they did again- oh the relief that is on a sunny day). So many more.

I would strong urge you to consider Lemtrada in this time of change.

I would be happy to talk with you more about Lemtrada or you can read my blog of my first year on Lem (lemtrada.blogspot.com). Fellow member @tracyd has also had Lemtrada and has her own blog.

Lemtrada is the strongest medicine we have to fight back against MS. If you can spare a week of your life to get the medicine, then you basically just have to wait for it to work after that (3 more days a year later). But you don’t have to take a pill every day and the medicine is out of your body in 3-4 weeks but keeps working to keep your MS at bay.

Best wishes in your search for the right treatment for you!

Take care,
Emma


melissa-g
10 months ago

Hi @us-emma
While I do enjoy hearing your story with lemtrada and appreciate how great it’s been for you, I just want to remind you that it’s not necessarily an option for everyone. I’ve tried for a long time now to have it prescribed but it hasnt worked out for me and I just don’t think personally I’d be able to do something like fly to Germany to be treated, though I wish I could!


arknat
10 months ago

With positive MRI’s and no relapses, my Neurologist did not encourage moving from Gilenya to Lemtrada. He mentioned that his Lemtrada patients were only ones who did not respond to other DMTs. He was considering Tysabri if Gilenya did not work out for me .. but is also open for Lemtrada in future. I guess in terms of relative strength to control relapses, it is in the order of Lem > Tysabri > Gilenya.

I’m wondering if there’re folks here who have been stable with Gilenya coming from Tysabri.


us-emma
10 months ago

Hi Melissa,

I traveled to Germany in 2014 because the Food and Drug Administration in the US had just rejected Lemtrada approval in the US and I was out of effective options to treat my MS. I was losing myself to my MS pathology and desperate.

I know @hannah015 waged a LONG war with her local NHS area to get Lemtrada available at her local hospital. I believe it took her over a year but she did finally receive Lemtrada.

So sometimes we have to go to great lengths to advocate for ourselves. It is hard to fight such battles when you have a disease that robs you of energy and sometimes cognitive abilities. Lemtrada is not the right choice for everyone but I strongly believe that if it is approved in your area your doctor should at least be considering it as an option when chosing a DMT.

What has been the issue in your situation? If there any way we can help advocate for you personally or your area if Lem is not yet infusing there?

If I can be of any help I am glad to offer- even if that is just moral support.

I hear good things about Aubiago but am concerned about some of the side effects- liver issues primarily.

I hope you find the DMT that is most effective for you.

Take care,
Emma


us-emma
10 months ago

Arknat,

I agree with you in your assessment of the most effective DMTs:
Lemtrada is #1
Tysabri is #2
Gilenya is #3

I was certainly not stable going from Tysabri to Gilenya with 2 relapses in 11 months (I had been relapse free in the previous 5 years). In addition to that I now have permanent heart damage for Gilenya. I am just not a fan of Gilenya.

I should tell you my bias though- I believe in fight MS with all I have. I HATE giving up my independence and personal abilities to this disease. I detest becoming dependent on others. So I make aggressive choices to fight my MS.

I understand some people are ok with less effective options.

Because of my medical background I have a good understanding of what is happening inside my brain and how that affects my future. So I have chosen to fight back in the strongest way I can.

Take care,
Emma

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