About to start

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.

About to start

Postby sophie447 » Mon Aug 26, 2013 9:14 pm

This is much of a post on another forum. Please forgive me if you read it twice.


I took Copaxone EOD for the past year or so. It was not what was recommended by the doc but I just decided that every day was just too much. Of course, if I had believed Copax would make a huge difference I would have felt differentlly. But for 30% reduction in relapses... I figured I would take my chances! I added a regimen of vit D3, magnesium and zinc.

But I end up today in a not so comfortable place, as just from last year, 2 new lesions. Adding up to 2 lesions the year before and the 2 initial ones, the doc is recommending I try some other med. Not enough Copaxone or just not effective... we'll never know.

And what he is proposing is hard to swallow... if I might say. He is proposing Tysabri, Gilenya of Tecfidera 8O ! When I tought I wasn't really sick!! I kind of decided on Gilenya, but might just change my mind. So hard to feel like I am making the right decision.

Anyone here taking Gilenya and doing apparently just fine? I mean no relapses, no apparent disability or dysfunction? I can't help but wonder if the doc is being way too agressive for the amount of activity my MS is showing.

I will just add, I hate this disease :-x
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Re: About to start

Postby CaliReader » Tue Aug 27, 2013 12:57 pm

I'm not the long term user you were looking for, but I'm on it and it seems to be helping.

I've been on this since this Spring. The timing of starting coincided with a flare. I'm recovering and doing much better, but very unhappy with losses I haven't regained.

That said, this was what I chose and was pretty convinced it was what I wanted as between all options. In your shoes, I would fight my neuro if not convinced, but I'm rebellious like that. I don't submit to much of anything without being personally convinced one way or another.

Re symptoms, fatigue is comparable to a year ago, much better than I had expected, better than before most recent flare. Pain has also improved to much better than baseline. Motor issues have not improved but are not worse. Sleep has improved.

So. I haven't been on this that long. So far so good and I'm hoping for good results, maybe enough to last until something safer and more effective shows up. I'll be reporting some time in the next six weeks re the results of follow up testing.

But as to your concern re aggressive treatment, you should pay attention to what you want. For me, I'm watching Tecfidedera, not sure it is as safe as advertised. I trust the four years of reports from 70 thousand plus actual patients re safety or not, much more than I trust any reports based on trials. I'd rather face identified risks than a brand new drug. Re G, I'm standing ready to quit any time the news shows an increase in bad outcomes that crosses my risk vs benefit threshold. I could turn around tomorrow and quit, but I'm not ready to do that yet. Neither option offers the information I would ideally want, but the one I chose offers more. Tysabri is on my personal 'never' list, but again I can't make that choice for anyone else.

Best,
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Re: About to start

Postby sophie447 » Tue Aug 27, 2013 1:18 pm

Just love your way of thinking it over. I too, prefer an actual risk history as opposed to what the pharma HAD to report from the studies. That is one of the reasons I chose G over Tecfidera. Also, my stomach has trouble with most meds I try, so I figured Tec is probably not the best choice. As far as the number of 70 000 G users, my doc presented it to me as 45 000 users worldwide. A little funny, he is more of a researcher than anything else. :?

Tysabri is also a med I think I will NEVER consider, anyway, certainly not while I am doing as well as I am doing right now. The fact that Tec is also manufactured by Biogen is making me really want to wait and see what happens is the real world with that new one.

I will look for your future reports and maybe will do the same.

Thank you for replying
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Re: About to start

Postby CaliReader » Wed Aug 28, 2013 10:01 am

Hi Sophie,

I appreciate your caution. That's wise. When I researched, there was no reported case of PML with Gilenya that was not also linked to Tysabri. Now there is one, with two cases reported total. I think I would still choose it, but it makes it a messier choice. That's still a very low incidence compared to Tysabri, but PML is a horrifying outcome. I need to write an advanced directive that specifies DNR and DNI specifically for PML. I would not want to live with the aftermath of that disease.

Now that I'm on Gilenya, I have to balance the benefits I'm getting, plus the future benefit of having possibly slowed the disease down now, plus the risk of rebound, against the risk of infections and PML. Unless PML cases start crawling out of the woodwork in large numbers, I'm committed for a few years. The immune system slows down after a certain age, so if I can make it that far on Gilenya, that's my time frame to stop, both because of increased risk of infection on G at the point and because any rebound would presumably be milder. I'm also looking at possibly substituting drugs if better options come available, but that's speculative.

I am better now, but my initial symptoms during the flare that led to diagnosis absolutely terrified me. I feel much less anxious on a drug than I was off one. I am also working to increase cognitive reserve, maximize sleep, maximize nutrition with a Wahlsian diet plus supplements, enhance blood flow with aspirin, and looking for a doctor to consult with about whether and how to add neuroprotective hormones. I have read that 15 % or so of MS patients turn out to have mild disease for a life time, but those odds are too low for me, so I'm fighting with everything I have as if I know I am at risk for bad SPMS.

Re 70,000 patients on G, I have no personal knowledge. That's the number I've seen quoted on Dr. Prof. Giavannoni's blog at the London neurology center at Barts. He posted this article today which again used the 70,000 number. It would be interesting to see it proved or disproved.

http://multiple-sclerosis-research.blog ... tions.html

I look forward to hearing about what you choose to do and hopefully why, if you are willing to share.
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Re: About to start

Postby AZStevo » Sun Oct 13, 2013 9:50 pm

FYI, did copaxone for several years but went to Gilenya in Spring 2012 because, from what i read, the results were better in tests. 2 new lesions were detected and my disability level was increasing, I wanted something which might be more efficatious. After 1.5 years I'm about the same but have no new lesions. Since my initial dosing I have had no side effects at all except my BP went from 120/80 to 130/upper 80's, not too significant. I hope this helps
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Re: About to start

Postby sophie447 » Wed Oct 16, 2013 7:31 pm

Thanks AZStevo.
I started Gilenya 3 weeks ago.
My blood pressure has also risen. Probably due to the decrease in my heart rate that is not yet gone.
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