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Cannot tolerate Tec any longer. Switching to Gilenya. Help

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    Cannot tolerate Tec any longer. Switching to Gilenya. Help

    Well..... First I will share a short version of my story. I am 41. MS dx at 27. Took copaxone for about a year. No relapses, convinced myself I didn't have MS and quit taking the drug and seeing Dr. Went untreated for 10 years. Had mild episodes that I didn't think were MS. (Wrong)!!!

    Major relapse in 5/2013. MRI showed many many old lesions and 2 new/active. Immediately saw MS Specialist and started Aubagio. Took it for 8mo. Had MAJOR hair loss and neuropathy pain. Got aggravated and quit taking it. Had another major relapse in 6/2014. (Progressive lesion worsening) Started Tecfideria. Dr wanted Tysabri, sounded wonderful, I had very substantial disability from relapse. JCV titer very very high, 3.6. Not a risk I was willing to take.

    Knowing now the importance of being on a DMD I suffered through super severe stomach pain for several weeks. Not nausea/diarreah but excruciating pain. It stopped, I made it and thought all was well. Been on it for 8mo now. About 2 months ago I developed fairly severe acne, horrible night sweats, severe fatigue, decreased mobility. Immediateky assumed it was hormonal. All test were perfectly normal. Research was done by my PCP and though these things are not listed as side effects by Biogen there were many reported cases of these exact symptoms with Tec. Went to MS Dr today and he agreed. Said it needed to be stopped.

    I'm borderline SPMS so efficacy is very important. Gilenia is about all we have left to try that doesn't seem to have the daily debilitating side effects. Feel like this is my only option. Would like to hear BOTH positive and negative experiences.

    I feel like I'm at the end of my rope. I feel like there is no good solution. I'm aggravated, discouraged and just plain tired.

    Input is appreciated.

    #2
    I've been on Gilenya for a little over a year, and I have no complaints. I haven't noticed any side effects or relapses while on it. The most annoying things about it are the frequent testing needed the first year. I'd recommend it to anyone that meets the criteria for it.

    I posted more details about my experience in the "I want to hear good news about gilenya" thread.
    Optic Neuritis in 2004, Dx with RRMS in 2012. Copaxone, Sept. 2012 - September 2013. Gilenya, February 2014 -

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      #3
      I've been on Tec for 1.5 years and am also considering switching to Gilenya. I hope it works for you! For me, ongoing Tec S/E's include GI issues, flushing and fatigue. My MS specialist today said she hadn't heard of fatigue as a S/E for Tec but I've definitely seen it mentioned on here. I have RRMS though.
      Sorry I can't be more help since I'm just starting to research Gilenya but keep us posted on how it goes for you!
      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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