Curiuos about Gilenia

[bruiser]

My son has been on Tysabri for over 3 years and has tested positive for the JC virus? His neuro wants to switch him to the new oral medication which seems to have it's own risks. Does anyone have any feed back on this?

[agate]

Hi bruiser,
I'm sorry your son has run into this snag with Tysabri. I found this about Gilenya (fingolimod) (from August 2011):

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Also this, from June 2011:

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And from February 2011:

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I haven't taken Gilenya myself but others who have might come along and reply.

[Virginia]

Hi Bruiser, I don't know anything about Gilenya personally. However, I know a lady who has a son that has MS. Everytime I would see her (he was on Avonex) I would ask about him and he never was doing really well though he was still working. He went on Gilenya and it was just a few months when I asked again and she said he was doing great.

Virginia

[Cherie]

As some of you know, I have a large network of PWMS with whom I communicate regularly throughout the US, Canada, Australia, Europe and a scattering of folks in Africa, Asia and South America. Some folks have chosen to go the Gilenya route and about half on it are telling me they are doing very well (12) and about half (11) have significantly elevated liver enzymes and flu like symptoms. Seems to be a trade off with the interferons. Some tolerate it and some don't. Docs that thought it might be great are now telling me they are prescribing it with caution and less often now than when it came out. (I've heard this from 5 MS neuros from the States).

[Jen's Solitude]

I have been on Gilenya for about 3 weeks now. If you would like to read about my experiences feel free to Only registered and activated users can see links., Click Here To Register.... If you would like to ask any questions, please do so I would be happy to answer any concerns as far as my personal use is concerned. :)

[Cherie]

The link describes your experiences leading up to getting it. How have you done in the 3 weeks on it? Any side effects that are uncomfortable?

[Jen's Solitude]

Hi ya Cerie! This is bntgal just with a different username. :o I am just about to write the second part of my experience which will cover the three weeks I have taken Gilenya. Although I have had some minor side effects, I am relieved to report nothing serious has happened so far.

~Dar

[Cherie]

Glad to hear it. What the neuros have been telling me (5 now from different parts of the US) is that LFTs (Liver Function Tests) have been elevating higher and sooner than Novartis told them to expect. Initially this was not supposed to be a problem until at least 6 months into dosing and many are finding that after as short a period as one month there are elevations (which might be managed by something like Milk Thistle). So some of the docs are routinely checking levels every 4-6 weeks rather than every 3-6 months. This might be a discussion you might want to have with your doc.

[Jen's Solitude]

Thanks Cherie, my neuro did ask me to see him at six weeks. I have to call and check on the date.

Dar

[Cherie]

Saw my neuro today to discuss treatment plans now that I have been off all meds for 11 weeks. He has several patients on Gilenya in both practices (two adjoining states) and said that he has been doing blood work every 6 weeks on all of them and virtually all have elevated right away. He said he's using a lot of Milk Thistle to control this and it is working well for most people allowing them to stay on the med.

He said since my LFTs had elevated with all of the interferons, he did not recommend I try Gilenya as , in his opinion, they would likely elevate on that medication as well. It's not ruled out...just not being considered for now.

[PhireX]

My neurologist wants me on this ASAP. I got my MRI results back for my spine (never had one) and it said 'widespread lesions on the cord' and other nasty stuff. She said she wants me on it ASAP. I'm not sure. It hasn't seemed to worsen that much other than fatigue, some muscular pain & cognitive issues. It's a hard decision. You read about the wonderful results it has but it's a relatively new drug, and no one knows what the long term side effects are. Seems it could bring about a whole new set of health issues which really wouldn't be ideal.