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Thread: My First Relapse in 7 Years

  1. #11
    Distinguished Community Member Jen's Solitude's Avatar
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    Quote Originally Posted by ssusan View Post
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    Hi Dar,
    Long time ,no see'
    I'm not around much. Linda Lazarus let me know you were here.
    Sorry for the big relapse. My mobility is pretty gone but it has been more progressive rather than a big event. Only exception was when I had the flu last winter. I lost a lot and regained a little.

    I am going for a second opinion at MGH next week for treatment. Neuro at MSClinc in Worcester kind of shrugs.

    Will see Linda tomorrow for second to last farmers' market of year.

    Great to hear your voice, Dar.
    -Susan
    Long time for sure Susan! So happy you dropped in to say hello. I hope your day with Laz was enjoyable. Sorry to read about your mobility issues and I hope your second opinion proves helpful. I have picked out a new neuro to see now I just need the energy to get there. HaHa Maybe you will get more then a shrug from your visit. I don't know what is worse to receive apathy or sarcasm from a neuro. I guess it is six of one and a half dozen of the other, sad to say.

    If you feel up to it I hope you post about your upcoming consultation and I hope you are surprised with something helpful from the doctor.

    Hang in there and I will do the same.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  3. #12
    Distinguished Community Member Jen's Solitude's Avatar
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    Quote Originally Posted by Cherie View Post
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    DAR,
    I had the worst relapse I can ever remember in the Spring of 2013 and have not fully recovered from it yet. Did not do steroids. Went on Tecfidera...AWFUL!....then my doc suggested I try LDN...nothing, just continued to worsen....then I went back on REBIF after 4+ years off and things normalized. Had to go off it earlier this year because of $2000/month copay with this insurance and worsened again till I got help with copays in July and went back on . Not back to previous normal and thinking I probably will not get there at this age and after all this time but I am pretty independent and highly functional so am not complaining. When we get to a certain age, we have to start looking at what might be MS and what could be related to age or underlying other illnesses.
    Wow Cherie, I didn't think the copay for Rebif would be that expensive considering how long it has been around. I am glad you were able to get help with the copay and so sorry to read about your trouble with Tecfidera. I am trying not to expect that I will get back to the way I was before this flare-up so thanks for your perspective and your experience.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  5. #13
    Distinguished Community Member Jen's Solitude's Avatar
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    Quote Originally Posted by agate View Post
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    Dar, you were on Copaxone a while back--are you still taking it?
    Hi Agate. I did take Copaxone but tired of the injection site reactions years ago and quit taking it. My neuro in NJ persuaded me into trying Gilenya (spl?) and I actually felt a tiny bit of improvement with my fatigue. Unfortunately I was one of the few people who developed macular edema as a side effect. I tried to ignore the vision problems because I was so pleased with the decrease of fatigue. Finally I went to have my vision checked and it was all over the place. My eye doctor called my neurologist (both are) here in Delaware) and they both agreed I had to come off the Gilenya. I was beyond disgusted and disheartened.

    Cherie right now I am not taking anything. The other oral pill (can't remember the name) scares me as much as Tecfidera because of my other health issues. So right now I am still in search of a treatment.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  7. #14
    Distinguished Community Member Jen's Solitude's Avatar
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    Sorry . . . I meant to write ocular edema, not macular edema.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  9. #15
    Distinguished Community Member agate's Avatar
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    If it was macular edema, some people have been saying that there are treatments available that would make it possible to stay on Gilenya, but you probably went over the possibilities already. For instance:

    http://msj.sagepub.com/content/21/2/249.abstract

    --You mentioned frequent falls. Has PT been of any help? I recently went for another course of PT, something I seem to need occasionally, and came away with some balance exercises and core-strengthening routines that really are helping to stabilize me.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  11. #16
    Distinguished Community Member Jen's Solitude's Avatar
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    No actually my neuro didn't mention any other possibilities, he just said I could not take it any more. He called it ocular edema although I don't know what the difference between the two are. He did say that he and the eye doc agreed it could only be from the Gilenya. I read that ocular edema was a rare problem so you could imagine how disgusted I was to be one of a small percentage that developed the problem. By the way I do have diabetes but they didn't seem to think that was an issue. Shortly after discontinuing Gilenya all my issues with my vision cleared up but I am due to get my eyes checked again as soon as I have the energy. I discontinued the Gilenya within a couple of years of our move here to Delaware and haven't tried anything else since.

    I found PT very helpful. I was only able to go 3/4 times and then the fatigue came back and I just did the exercises here at home. I have noticed that I am able to catch myself now indicating my balance is better and my leg and ankle strength keeps improving as well.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  13. #17
    Distinguished Community Member agate's Avatar
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    I think macular edema is a type of ocular edema. Ocular edema would just mean swelling of the eye, while macular edema refers to swelling of the part of the eye called the macula:

    http://www.medicalnewstoday.com/articles/159111.php

    It's too bad that Gilenya gave you that problem. These new MS drugs can do great things, but then there are the side effects.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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  15. #18
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Jen's Solitude View Post
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    Hi Agate. I did take Copaxone but tired of the injection site reactions years ago and quit taking it. My neuro in NJ persuaded me into trying Gilenya (spl?) and I actually felt a tiny bit of improvement with my fatigue. Unfortunately I was one of the few people who developed macular edema as a side effect. I tried to ignore the vision problems because I was so pleased with the decrease of fatigue. Finally I went to have my vision checked and it was all over the place. My eye doctor called my neurologist (both are) here in Delaware) and they both agreed I had to come off the Gilenya. I was beyond disgusted and disheartened.




    Cherie right now I am not taking anything. The other oral pill (can't remember the name) scares me as much as Tecfidera because of my other health issues. So right now I am still in search of a treatment.

    Dar,
    I have been incredibly successful with my medications. I am progressing so I do not want to mislead you but I am physically active and farming along side John.

    I use Ampyra which helps me walk.
    My significant med is Rituxan. It has a good record and usually gives no bad side effects. Cherie took it and had a rough time but that is the exception. It is an infusion I get ...two days every six months. It keeps me active and alert and moving. Toward the end of the six months it is obvious that I need another infusion!

    I take many symptom management meds.

    There are so many choices now it must feel like a maze.

    Linda
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  17. #19
    Distinguished Community Member Jen's Solitude's Avatar
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    You are right Laz, it does feel like a maze. I have tried so many different things over the past twenty plus years that I can't remember them all. Some I was allergic to, others just didn't work for me. Ampyra is familiar sounding but I don't remember why. Maybe I tried it and it didn't work or I was allergic. Fatigue/exhaustion is my main problem. I have Lyrica for nerve pain which has been a great help but nothing long-lasting for this mind-numbing exhaustion. I'll keep looking for the next drug though as my energy allows. Thanks for sharing your experiences with me.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  19. #20
    Distinguished Community Member Howie's Avatar
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    Cool

    DAR, I don't know if you remember me, but I remember you. I've been coming to this forum since '99. It was a very different place then. Now, it's a true support group.

    I guess you could call me the forum "nut". I love to make folks laugh, and forget about MS, even if it's for a moment.

    THAT is my medicine. I take nothing for my MS, and have been blessed with still being able to walk and drive. I live with my two cats who have been with me on this strange MS journey.

    It's great to see you back, and posting, and I wish you the very best.
    Evolution spans the Universe.

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