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Out Of Limbo

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    Out Of Limbo

    So I have just officially left limbo land and joined the world of the Newly Diagnosed. Looking over drug options is a little overwhelming! Right now I am limited to first gen meds as 2nd line meds are generally not covered by insurance here unless the first gens fail you or you are quite debilitated. My list of available meds is Avonex, Rebif, Copaxone, Tecdifera, Aubagio, and Plegridy.

    Betaseron and Extavia were excluded as they are equivalent to each other, and I am sure I would mess up the every other day dosing. I think I have eliminated Abuagio and Tecdifera as well,as they are more immune supressing than the interferons and my line of work puts me at higher risk of infections. Any thoughts on Plegridy, Avonex, and Rebif? Other than the dosing, they seem pretty equivalent to me.

    I know none of these are actually going to do much for current symptoms. I count myself extremely lucky. In the last 2 years I have had 3 episodes of new symptoms, with lingering weakness, parasthesia, fatigue, etc in between. My MRI is fairly stable so it appears to be RRMS and not overly aggressive. My hope is to keep it from getting worse as much as possible.

    Any thoughts? Right now I am vaccilating between relief and distress. Relief at knowing what the heck has been going on, and distress at no longer being able to think maybe I was just making it all up.

    #2
    Have you also excluded Copaxone? Although you list it initially, you don't mention it in your question.
    Copaxone 20 is a daily dose. Copaxone 40 is twice the number of milligrams; it is 3x per week.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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      #3
      Copaxone

      I mostly left Copaxone out because I have heard of weird side effects and more skin problems. Has your experience with it been good? I am leaning toward Plegridy simply because it's taken less often and maybe that means I won't have to deal with side effects too often. I'm a busy lady, still working 3/4 time as an RRT, as well as being a mom to my daughter and a caregiver to my elderly dad with dementia. I also hate needles so once every two weeks appeals.

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        #4
        Copaxone 40 is working well for me -- 3x per week.

        When I was on Copaxone 20, site reactions in some sites were intolerable, so 7 days per week didn't work for me. I modified my dosing schedule in consultation with my doc.

        I didn't ever experience an IPIR reaction -- even in 8 years on Copaxone.

        And, we all respond differently to different meds and Copaxone is much more effective at managing my MS than Betaseron, which I was on from 2003 - 2008.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Originally posted by WildRoseRT View Post
          ... Any thoughts on Plegridy, Avonex, and Rebif? Other than the dosing, they seem pretty equivalent to me ....
          When I was dx'ed there were only the CRAB drugs. Since I have a needle phobia I chose Avonex (once a week). It worked well for me - after a couple of doses I simply 'didn't feel great' the day after. But the needles caused me to quit taking any DMT.
          I started Gilenya when it came on market, but quit in May - side effects were becoming too concerning to me.

          I will talk to neuro in Jan about latest MRI. He said that if there was no new activity he would be ok with me not taking anything, but that there are other orals out there. I do not think that I want another oral - like you I don't want to risk side effects . I have been considering Plegridy simply because it is like a powered-up version of Avonex, but it is still a needle involved .

          Originally posted by WildRoseRT View Post
          ... Any thoughts? Right now I am vaccilating between relief and distress. Relief at knowing what the heck has been going on, and distress at no longer being able to think maybe I was just making it all up.
          I had to smile at this. I was relieved too - I had been afraid of a cancer in the brain. Little did I know that cancers can be actually treated - cured is the better word. I would have been better off with a brain tumor .

          Good luck with your decision . If nothing else you can always stop and start another DMT if the first one doesn't work.

          Comment


            #6
            Plegridy Fail!

            So I tried Plegridy, first shot went not too bad but significant injection site reaction about a week after. Doc said it looked a little atypically large but thought it was not worrisome. Fast forward to 3 days after the second injection...

            Huge reddened area, massive itching requiring benadryl cream on the site and Benadryl oral for days to settle. Two weeks later it is just starting to fade. So Plegridy is out which is disappointing because otherwise the side effects weren't bad and every two weeks sounded so much better than the others. Consensus is I am either super sensitive to or possibly even allergic to somethin


            g in the formula.

            So new plan of attack... Copaxone for the next two months while I settle into my new less intense job and get all my immunizations up to date... Than Lemtrada. My Neuro is not keen on trying the other interferons, in case my allergy is to the interferon itself, and I'm not overly keen on many of the orals due to side effects and the effect they may have on my other health issues (high blood pressure and depression) and the fact that I can't always remember to take a pill to save my life! Onward we goooooooooooo

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