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Thread: Starting Tecfidera

  1. #1
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    Default Starting Tecfidera

    I haven't been here for awhile.

    Instead, I was hospitalized for 2 weeks from mid to the end of April, then home for 2 weeks, then back in for 3 weeks. I got out on May 31, and have managed to stay out, for now. This was the first major exacerbation I've experienced in the last 20 years....and came 3 years after my doctor encouraged me to get off Betaseron. I greatly regret that decision. I think that if I had stayed on it, I would not have had this exacerbation.

    I am significantly weaker than I was before things started falling apart. It is a major struggle to stand and transfer. My bowels and bladder had pretty much shut down before the first hospitalization, and while they are working now, they are not working consistently or dependably. I am dealing with extreme fatigue -- I'm "good" for about 6 hours a day, and then need to nap. My vision is significantly impaired. During the worst time, my eyes were not tracking, my vision was so blurred I could not see to read, bright lights were painful. That has improved, but my vision is still blurred. My voice was weak, I was having great difficulty swallowing.

    At any rate, while in for the second time, my new neuro (first one I've seen in 20 years, too), suggested I start on Tefidera, taken 2/day, a capsule. I am waiting for the med to reach me. It's sent by mail order, and the first shipment is supposed to be arriving today. I'm hoping that, over time, I'll more fully recover from this exacerbation...
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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  3. #2
    Distinguished Community Member agate's Avatar
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    So nice to hear from you! But what a shame that you've been laid up in a hospital. That's just not right at all.

    No point in regretting stopping Betaseron, really, though, is there? You might have had the exacerbation even if you'd still been taking it. Who can say? And your quality of life might have been improved a bit because of not needing to do the shot and put up with getting and keeping a supply of it. All of that effort in taking regular shots adds up to a slice of one's time and energy.

    Or at least I noticed a huge amount of free time that was suddenly mine after I stopped Avonex, and again after I stopped Copaxone.

    That can be nice if you're slow at doing everything anyway and so don't have a lot of free time.

    I hope you'll have good results with Tecfidera. I'd be really interested in knowing how it goes--

    How are your cats?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #3

    Question So why did you Stop?

    Hi Cat Dancer,

    So sorry to hear about your setback. I hope your recovery is fast.

    I am curious why your Dr. had you stop Beta. I have been on Avonex for 15 years and considering stopping when I reach the age of 65 (right now I am 62). I have been stable for about 12 years.

    This was the plan my Neurologist suggested, based on my history and my late menopause. It is her belief that menopause can stir things up a bit, so she wanted to be sure I was done.

    Anyway I was just wondering what your Neuro was thinking when they suggested you stop.

    Welcome back, I remember you quite well. You share the same wedding anniversary date as me and my hubbie. In addition I wish you good health.

    SRKW

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  7. #4
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    Quote Originally Posted by SRKW View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Cat Dancer,


    I am curious why your Dr. had you stop Beta. I have been on Avonex for 15 years and considering stopping when I reach the age of 65 (right now I am 62). I have been stable for about 12 years.


    SRKW
    It was a general practioner who suggested I stop - for the same reasons you mentioned here. I had not experienced a major flare for over bl15 years, was past menopause. The thought was that all was stable. Not. ,I'm now 66.. The new neuro is putting me on the drug, despite age, length of diagnosis (30 plus years), hoping that I won't experience another flare any time soon.
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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  9. #5
    Distinguished Community Member SalpalSally's Avatar
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    Shees Cat, just when you think things have reached a platteau
    for you, All heck breaks loose. So sorry, hope TEC works out
    for you, and you become your old cantankerous healthy happy
    self again.

    I had one of those unexpected nasty exacerbations around TG
    time 2011. So even after you think you are safe in SPMS land,
    It can raise it's ugly head. Stay strong, do your daily PT & OT
    exercises and get thee better.
    Love, Sally


    "The best way out is always through". Robert Frost







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  11. #6
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    Good to see you Cat and glad you are improving.

    I have two friends who both have been told that they don't have to take their injections anymore. Both are over 65. One is seen at MGH and one in another un-related Boston teaching hospital. Neither got the "why" of it.

    I wonder if we missed something in the research??
    ANN
    There comes a time when silence is betrayal.- MLK

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  13. #7
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    :) Hi everyone. Cat it is good to see you back on board. A couple of times I thought maybe you had posted and I missed it. I'm sorry you are having a flare.

    I have been on 4.5 mg of LDN for over 13 years and I have had no new symptoms and no further progession since starting LDN. I was on Betaseron 5 years and Avonex two years and got worse on both. I am 72.

    Info on www.lowdosenaltrexone.org I printed and took to my primary and got the RX. Good luck. Keep us updated please. Jeanie :)
    Last edited by Jeanie Z; 07-06-2013 at 07:17 AM. Reason: typo

  14. #8

    Default Given me food for thought

    Thanks Cat Dancer,

    You certainly have given me an honest and direct answer. Makes me wonder if anyone really knows the natural course of MS.

    I of course have wondered if the Avonex is what has kept me stable. Or its just that my case was mild and limited.

    I was looking forward to stopping the shots, now I must rethink that notion.

    Thanks

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  16. #9
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    Similar position as you Cat. Went off Rebif after 6 years because of chronic UTIs and was on Cytoxan every 2-3 weeks for 25 months. I was told that would reset the immune system and I could expect to be symptom free for the rest of my life. This...mostly because I was post-menopausal. It has not been two years since the Cytoxan (port is still in and doc was considering restarting it) when I had my first relapse in three years in March. Mostly recovered by the end of May but if I am honest, this is the worst I have felt in probably 10 years.

    My doc ordered Tecfidera on June 20. My insurance declined it as it is not yet in their formulary. On July 2, I was told that I qualified for free drug till December 31, 2013 while Blue Cross got the med in their formulary ($5400/month).

    Today I called again to check on it and it had been "lost" in the holiday shuffle. They told me an incident report was being filed. They also told me that I should not have to be calling to get the med...my Dr's office should be doing that. Long and short...they are fast tracking it and I should have medication tomorrow delivered to me.

    I would be interested in hearing other's stories of the attempt to obtain a newly approved drug and how successful or difficult it has been.

    Cat, I hope that this is an answer positively for you.
    Last edited by Cherie; 07-09-2013 at 07:01 PM.

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  18. #10
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    So, it came on Friday, and I started Friday night. They start you off with a half-strength for a week, then full strength. I haven't moved to full strength yet. The major side effect -- flushing and feeling hot -- I definitely am experiencing. Hasn't helped that the weather has been unusually hot and humid, too. Bottom line: I'm not feeling particularly well. Don't know if it is because of the drug, or just "because". Hieaving bladder problems. My *usual* bladder problems have been retention. This time it is incontinence, particularly at night. Such is life with MS.

    Still have a visiting nurse coming -- in fact she's due here in an hour. I'll tell her and see what she says. Probably not much: she hadn't heard of the drug when I told her about it....

    Cherie, I didn't have a problem getting it, other than a bit of a delay from when the doctor first prescribed ite and I first heard from the company. They called to tell me "we didn't expect such a demand for it,so there was a shortage, but we're caught up, now..." My insurance is covering the bulk of the cost, but I am paying $35 / month.
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

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