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    #1

    WHAT'S GOING ON HERE??

    I started a new DMD on Feb 12 and ever since then my sx's seem to have really ramped up. More specifically, my leg pain, nothing seems to stop it not even my pain meds, then my fatigue has become over bearing and let's not forget my balance and my difficulty walking. I am going to my Neuro tomorrow I just thought I would try to get some input from my fellow MS'ers.

    It's getting to the point where I hope I don't wake up in the morning. Has anyone had this happen to them? I feel like I've been on the DMD long enough for my body to become used to it. The only thing I can imagine is I'm in another flare or I'm allergic to the DMD. I am really becoming concerned about this.

    Any input would appreciated. Perhaps I can get something to take back to my Neuro tomorrow.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth
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    #2
    Several things come to mind.
    Is this the Gilenya and didn't you have problems right after you started? It could be the drug. How were things when you went off the Tecfidera, was it causing flares? Could this be a rebound from coming off the Tec? Lastly, how long does it take for the new drug to build up and become effective (some take several months)?

    Sorry, I just have more questions for you. Hopefully, your doctor will help you out.
    Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

    Comment

      #3
      Thanks Fairpace,
      Yes you have raised some more questions. But that's ok those are things I can talk to my Neuro about.

      I did have problems when I first started Gilenya. As for the Tecfidera I got off of it because of flares and MS was progressing while I was taking it. Somehow I don't think it is a rebound flare from stopping Tecfidera. I have given thought that it could be the Gilenya, but I am hoping it's not.

      I am starting to lean towards it being a flare or I am allergic to Gilenya, which I am hoping is not the case as I said before.

      I am hoping I will get some kind of answer tomorrow. The way my luck has gone with DMD's I will be allergic to Gilenya and have to stop taking it.

      I think it takes several months before Gilenya actually starts to work. However, I don't know how much longer I will give it. But, with that being said, since this would be my last chance DMD I will just have to suck it up and ride the train however long it takes to start working.

      What a dilemma. If I were a betting man I would bet on it being Gilenya.
      Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

      It's hard to beat a person that never gives up.
      Babe Ruth

      Comment

        #4
        I'm on Gilenya right now, and having very similar reactions to it. I went to every other day per my doctor and feel crappy on the day I take the drug and even weaker/more awful on the day that I don't. It all started virtually the day I started the drug – before then, I was feeling pretty good.

        I really hoped that this one would work, but yet again my body seems to be rejecting it. Now I'm left wondering if this drug has screwed up my system or if things will revert to my usual but somewhat manageable badness once I go off it. Do you think your doc will take you off it? I'm going off it whether or not mine approves as it's not tolerable to feel this bad every day.

        Comment

          #5
          Well I saw my Neuro last week and he seemed rather concerned. He gave another medication to take along with my pain med to help with the pain. None of the problems I mentioned in my post have cleared up. If anything, I would say they have become worse. Especially my headaches which are getting progressively worse.

          I see my Neuro again on April 1st which just so happens to be the anniversary of my dx. If things don't get better I have no idea what will happen, but I do know this, I don't how much more of this I can take. It's making my life miserable!

          I have tried everything except Tysabri, which is off the board because I tested positive for JCV. I am at a loss and only time will tell.
          Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

          It's hard to beat a person that never gives up.
          Babe Ruth

          Comment

            #6
            In the same boat

            Originally posted by Waydwnsouth1 View Post
            Well I saw my Neuro last week and he seemed rather concerned. He gave another medication to take along with my pain med to help with the pain. None of the problems I mentioned in my post have cleared up. If anything, I would say they have become worse. Especially my headaches which are getting progressively worse.

            I see my Neuro again on April 1st which just so happens to be the anniversary of my dx. If things don't get better I have no idea what will happen, but I do know this, I don't how much more of this I can take. It's making my life miserable!

            I have tried everything except Tysabri, which is off the board because I tested positive for JCV. I am at a loss and only time will tell.
            I was diagnosed 3 1/2 years ago, and have not been able to find the right "cocktail" to get this disease under control. Just like you, I tested positive for JCV, but I did the Tysabri for just over a year. Since transferring to Tecfidera, the pain in my legs has gotten out of control. Neuro took me off Tecifidera until I see him again on 3/23. I am now at the max dose for Neurontin with NO relief. Can I ask what you are taking for pain? I just had new MRI's of the brain and spine done on 2/23 -- which shows me as stable. My cog-fog is awful -- conversation is difficult and my hubby often has to finish my thoughts for me. I don't feel stable, especially when I keep falling. I am the epitome of "can't walk & chew gum at the same time". I literally cannot do 2 things at the same time. Using a cane was a nightmare since I cannot coordinate my arms and legs to go in the same direction at the same time. I use a wheeled walker or only shop at stores with shopping carts. Even when I do go to the store, I am fatigued for the rest of the day, and my family wonders what I did all day. I too have the headaches and these really weird spots in my vision -- which no one can explain.

            My thoughts & prayers go out to you, and I hope the neuro has some new ideas for your care on April 1. If you don't mind, can you please keep updated on your care? I am always glad to hear about what is working for someone -- what people are trying, etc. I remain hopeful that by keeping up with this organization, I will grab onto to new ideas that I can take with me to my next Dr. appt.

            Comment

              #7
              Hey Moldy Oldy,

              I am taking Morphine for my pain along with Trileptal. I actually had to call my Neuro today. Yesterday I thought I was going to die. The pain, headache and inability to walk was overbearing. My DW and I had a long talk last night and we agreed to wait until April 1st, but after I got up this morning I had to call. My legs were stiff as a board and again had trouble walking.

              He told me to stop taking the Gilenya and come see him on Thursday. So now I'll see what happens. I'll let you know.
              Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

              It's hard to beat a person that never gives up.
              Babe Ruth

              Comment

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