I tend not to focus too much on the medical part of MS on my blog, but the release of Gilenya http://www.ms-society.ie/news/show/fda-approves-oral-therapy in the UK last week made me hopeful so I thought I should write about it.
When I was diagnosed with MS, loads of the professionals I had dealt with had spoke about an oral treatment that may be released this year. I was really excited when it became available in the UK as it should be available in Ireland soon (allegedly September 2011). Then I noticed on an online forum that someone had listed A LOT of side effects from it (slowed heart rate, distorted vision, elevated blood pressure, increase risk of serious infection, liver damage etc.). This freaked me out and now I think that I should stay on Copaxone. I don't even know if I'm eligible for Gilenya yet, but the reactions I have been having from the Copaxone have been getting me down. I would have been interested in starting Gileyna, but now I'm not sure. I have been lucky with Copaxone as the only side effects I have had are ones from the injection sites. I don't think I'm strong enough right now to tempt fate and start taking an oral medication that may not work, or may cause serious side effects.
I am SO appreciative of all the recent research into MS disease modifying treatments, but I just feel so confused about the whole thing. I just wish it was easier to know what was best for you!
Wow it took me 11 years to find blogging! Impressive you found this excellent coping mechanism. Yes, I heard frightening stuff about that oral drug as well. I'm looking forward to CCSVI research to start having a major impact on MS!
ReplyDeleteNicole
Oh I would be interested to find out how that goes. I'm still a newborn into this MS thing so any new treatments interest me :)
ReplyDeleteBesides experience a couple of Opportunistic infections, Gilenya has been sideeffect free. Have to stop Gilenya :( Hope to learn more about CCSVI
ReplyDeleteI'm currently on Rebif for a year and responding well to it.I would love to be on Gilenya and I cant get on it as I'm not disabled enough and the Rebif is working for me. I have done a lot of research into Gilenya and I feel that is the best thing since sliced bread :-)
ReplyDeleteI'm not a child and I should have some input into what treatment I should be on not how far down the EDSS scale I am.
But do you not feel like the docs know more than you do about the meds?
ReplyDeleteGilenya looks good on paper to you, but your MS is responding well to Rebif, so why change that?
I would be too afraid to mess with my treatment (Copaxone) as I am symptom free. Changing from injections to tablets isn't worth the possibility of getting symptomatic again for me!
Hi Lydia,
ReplyDeleteHealthline just launched a video campaign for MS called "You've Got This" where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.
You can visit the homepage and check out videos from the campaign here: http://www.healthline.com/health/multiple-sclerosis/youve-got-this
We will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos we'll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.
We would appreciate if you could help spread the word about this by sharing the You've Got This with friends and followers or include the campaign as a resource on your page: http://copingandhopingwithms.blogspot.com/2011/04/oral-treatment-gilenya.html
Please let me know if this is possible and if you have any questions. And, if you know anyone that would be interested in submitting a video, please encourage them to do so.
Best,
Maggie Danhakl • Assistant Marketing Manager
p: 415-281-3124 f: 415-281-3199
Healthline • The Power of Intelligent Health
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