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Would love some opinions on leaving Tec

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    #1

    Would love some opinions on leaving Tec

    Hello All,

    I haven't been on here for a while and I'd like to get some opinions. I've been on Tec for two years now and except for fatigue and spasticity, I don't have too bad a time with MS. This is my predicament, I contracted pneumonia in the middle of June-it was treated and I got back to normal with a little residual difficulty with deep breaths. Then last week I got a milder case, went back to urgent care and was put back on the same meds which take care of the worst of the breathing issues. I'm wondering now if Tec is making me susceptible to these things. My absolute lymph count was 0.7 last week, and my neuro had mentioned that 0.6 (or below) would be a concern. I go back to him on Thursday and I'm seriously thinking that I want to come off. It makes my mouth really dry-just a little nuisance-but I wake up every morning with my tongue stuck to my mouth. That's not enough for me to stop Tec but recurring infections could be. Any thoughts on going DMD free? I don't want to go back to needles but my husband is worried that if I don't take something, I might end up progressing and we would regret taking that road. Have to say, he says he will support whatever choice I make.
    Tags: None
    #2
    Think about Tysabri or Aubagio. Aubagio is about the same efficacy and Ty is about a 65-80% efficacy to their 50% for keeping away new lesions and exacerbations. I would look into those.

    Take care
    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment

      #3
      The Tecfidera Prescribing information includes the following statement from 5.3, "Withholding treatment should be considered in patients with serious infections until theinfection(s) is resolved. Decisions about whether or not to restart TECFIDERA should beindividualized based on clinical circumstances."
      • I am surprised your neurologist did not discontinue Tecfidera while you had pneumonia. If your body still has not fully recovered your neurologist may considering temporarily withholding treatment.
      • Many people have had a milder MS course until they didn't. MS damage is often silent, but progressive over time. I do not believe you can play catch up later if things get worse. For me the key is to mitigate as much damage as possible while you can. I believe the pros of a working treatment greatly outweigh the cons.


      I'll let others trumpet the call for not being on a DMD.

      Comment

        #4
        My fault Marco, didn't let him know I had pneumonia. I'll see him in a
        couple of days and see what he says.

        Comment

          #5
          I was on Tec for just over a year. I too had dry mouth problems but that's the only problem I had with it.

          The real problem came when I had a MRI right at the one year mark. The results were not what we had hoped for. The MRI showed numerous NEW lesions in my frontal lobes. It obviously wasn't working so my Neuro suggested I stop taking it and switched to Gilenya.

          Gilenya was a complete flop. The side effects I suffered were so bad I talked to my Neuro and I quit taking it.

          I am currently on no DMT's but when I see the MS Specialist with VA I will talk to him about Augio.

          Please remember those were my decisions in consult with my Neuro. I did what I thought was best for me. This isn't one of those "What's good for the goose is good for the gander" type of things. Please do your research and make the decision that is best for you.

          Good luck it's not an easy decision to make.
          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
            Saw the doctor yesterday-she thought I should come of Tec, she consulted with her partner and he agrees. She wasn't too keen on me not taking anything, thought Copaxone in a few months-I'll think about it. They both thought that my weakened ability to fight infections made the decision to stop the right one-now I have to work on getting healthier and hopefully the counts will improve.

            Comment

              #7
              thoughts

              Stopping Tecfidera was probably a good idea.

              Have you ever been tested for sleep apnea? This could be contributing to why with the low WBC you got the pneumonia. Just a thought that popped into my head. And, something to consider.

              I have gotten pneumonia a few times in the past. My neurologist insists that I see a pulmonologist to keep track of my respiratory status. The CPAP machine has helped with my fatigue, also.
              God Bless and have a good day, Mary

              Comment

                #8
                You can go off DMDs if you like the idea of MSprogression. Take a look at the video of Annette Funacello . That might help you decide.

                If you are on Tec I figure you don't want to risk Tysabri. I am staying on Tysabri because none of the others are as effective. My neuro said last week. Are there are any treatments as effective as Tysabri? The answer is there aren't.

                I stay on Tysabri because the risk of PML is still very low compared to the risk of being completely paralyzed and dying from MS progression.

                Comment

                  #9
                  Originally posted by Marco View Post
                  Many people have had a milder MS course until they didn't. MS damage is often silent, but progressive over time. I do not believe you can play catch up later if things get worse. For me the key is to mitigate as much damage as possible while you can.
                  Waves hand ✋. Hi. That's what happened with me.

                  Comment

                    #10
                    bbelaine,

                    Glad you discussed the low lymph counts, pneumonia and recurring infections with your doctor. Hope all is well while you take a break from a DMT. The Copaxone forum has a lot of good information & tips for new Copaxone users.

                    Good luck,
                    Bree

                    Comment

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