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Time to get off Tecfidera maybe?

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    Time to get off Tecfidera maybe?

    I have been on Tecfidera now for 18 months. During that time, I didn't experience any of the gastro-intestinal issues that seem to be a big problem for lots of people. However, I spent the first 6 months feeling like I was living inside an oven while flushing seemed to happen to me all day, every day. Now, after more than a year, the flushing happens only a few times during the day but it happens all night long and will even wake me up. I used to be a very cold sleeper, needing lots of blankets to stay warm and now I'm not even bothering with a sheet....in the middle of winter, with the window open! My neuro tells me it's hot-flashes/night-sweats from menopause (which has not been an issue with me since 2008....so I don't think he has a clue about this).

    The other things I've noticed is that I have lost the "I'm full" feeling after eating. If I don't make a effort to stop, I keep eating and as a result I've packed on the pounds. And, I ache fairly badly in both of my arms and my left leg. My blood/liver panels have been great and I'm due for another one this coming month.

    What I'd like to know is if anyone else out there has had ongoing flushing/heat issues and if anyone else has lost the "I'm full" feeling after eating.
    Wendy
    "There are signs everywhere...."
    "Life is wasted if it's not lived as an adventure."

    #2
    Not feeling myself

    I have noticed that 'I'm full' feeling has gone away. I've also been on Tecfidera about 18 months (June will be 2 years) and I've noticed my 'disabilities' have gotten a bit worse. I was the person to look up to; energetic (to a point), helpful, not MSy. I had enough energy to clean the house and still enough to make dinner. Now I feel a bit more melancholy, my mood isn't as chipper, and my energy seems to be on vacation. I feel like everyone else with MS. I know it could be the disease but I don't feel that it is.

    I seem to be completely different for everyone else taking Tecfidera. My 'flushing' happens a lot when my sugar level is down, when I need to eat, and sometimes it's completely at random but it's always only around my neck. Sometimes, very rarely, it will creep up to my ears or down to my shoulders. I experienced a little of the gastro-Intestinal issues but it went away over time.

    I started out on Bataserion in 2009 and for 2 yrs. and I felt it was working/helping. Then Extavia came out and I didn't feel as good on it. I also lost A LOT of weight and the shots kept getting harder and harder to do. Painful lumps started to appear and so psychologically and emotionally I can not give myself shots anymore. So I was VERY happy when Tecfidera (BG-12) came out . But now, after almost 2yrs, I'm feeling I need something better and I have been contemplating switching to Tysabri. My blood test shows I'm JCV - and my latest MRI (first one in 6 years) showed no change.
    I'm wondering if anyone could let me know their experience on Tecfidera and/or Tysabri. Has anyone made the change from Tec. to Tys.? If you'd experienced my decline of mood, energy while on Tec., does it get better?

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