I had my last Tysabri infusion a month ago, and have since decided to switch to Gilenya. My body is currently going through that horrible Ty-craving period where I am tired all the time and have cognitive issues. Usually this goes away a few days after my infusion. However, because I am not getting my next infusion, how long will this feeling last? Does anyone else who has made the switch from Tysabri to Gilenya have a time frame?
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Hello lac4x9
My body is currently going through that horrible Ty-craving period where I am tired all the time and have cognitive issues.
http://www.nationalmssociety.org/abo...gue/index.aspx
Sorry you are feeling so bad. Hopefully you will feel better soon!
Take care,
KoKoPPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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lac4x9
The fatigue which I am referencing is the dreaded fourth-week fatigue that Tysabri users typically experience when we are in need of our next infusion. If you can imagine anything worse than your regular fatigue, this is it.
Wow, that particular fatigue must be horrible!
Maybe you would get more responses from Ty users in the Ty Forum?
Hopefully you will have relief soon!
Take care,
KoKoPPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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IVIG to Gilenya
Hi there,
I am experiencing something similar...going from a twice a week infusion of Gammagard (IVIG) to Gilenya one week ago. My cognitive ability seems decreased, and I am also wondering how long this "transition" period will last - hopefully it is just that.
Also, I have started my own MS blog that you might be interested in, documenting Gilenya...
***Personal URL removed by moderator per MSWorld guidlines. You may put the URL in your profile ***
Thanks and best of luck to us both,
Lori
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MultipleMiss IVig to Gilenya
Hi MultipleMiss,
I too just started Gilenya after 3.5 years on IVIG, Gammaguard. Today was my second dose. I'm wondering why you switched off of IVIG and what your dose was when you were on it?
In my case, I was on a very high dose (120 grams/month) but it seemed to stop working as well, and I even had a couple of attacks right after my infusion. These last 6 months on IVIG were bad, so I am hoping that Gilenya does better.
How are you feeling on Gilenya besides the fatigue? Also, how aggressive is your MS? Mine is pretty aggressive.
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Gilenya FATIGUE
I switched to Gilenya from Copaxone about 2 months ago. I had been on the Cop. for about 5 yrs. The bumps at the injection sites were building up, but apart from that, no real side effects. The Gilenya headaches are somewhat reduced, but the fatigue is amazing. I thought I had weak legs before, but the weakness in my legs and overall is much worse. I wanted to try to be sure it wasn't just me, but from this forum I don't think I am alone in this. If this continues much longer I'm back to the Copaxone.
When will the fatigue go away?
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I just switched from Tecfidera to Gilenya but since you haven't gotten a lot of responses, I'll share my experience. i just started G on Friday and had a lot of fatigue; my heart rate and BP were both running low (HR was 20-30% lower than usual). Today is the first day it's been a bit better/back to normal. Hoping this trend continues! Good luck to you, too; keep us posted!2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.
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