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    New +JCV & Confused

    I've been on Tysabri for 2 yrs & LOVE it! I'm as close to "whole" again as I've been for years. No fatigue, no new symptoms, no episodes, no shingles. (My episodes & anxiety seem to trigger shingles, such fun)

    I injected Rebif for 2 yrs & had flu symptoms for 2 yrs. Then injected Copaxone for 3 yrs until I had an accident & actually injected a nerve & was left with permanent damage So I went on Ty.

    Did I say how much I love Ty?? I've been JCV- until my last blood test a few days ago. I just saw the doc that day. I see him again in 2 weeks to discuss the next plan. My tieter is 2.5

    My MS is worse in my spine than in my brain. I've said for a long time that if I lose my ability to walk, I can still have a life. I am successfully treating nerve ending pain, depression, major anxiety, PTSD, a herniated disc in my neck & tummy troubles from all of the Rx meds. I been on SSDI for 3.5 yrs now due to the MS. I could NOT stay awake. The fatigue was horrible. Some days the pain was horrible. The injection treatment was horrible. So Tysabri has been so wonderful.

    Now I'm scared. I'm trying to figure out how one weighs the PML risk vs the other treatments that do not work as well as Ty. I HATE the thought of the big rebound episode if I quit Ty, the possible permanent damage from it or future episodes & the fatigue. After my last episode, I had shingles 3 times in 15 months. During those outbreaks, I was living on Hydrocodone & coating myself in Benadryl Gel. i'm an avid reader & once the fatigue took over my life, I couldn't enjoy reading because I would fall asleep. I read EVERYDAY now & have LOVED it again for the past 2 years.

    I know you guys understand the issues & appreciate you "listening." But how in the world do I decide how much risk is too much risk? If I were alone, it would be different, but I'm married & feel like it's selfish to put my husband at risk of me winding up in a nursing home due to PML. I'm not afraid of the death part, lol, it's the severe cognitive disability aspect of PML. Thanks
    ~ There's nothing so peaceful as watching my pets sleep ~

    #2
    Hi dogkeeper,
    can you go 6-8 weeks for your infusion ? There was info from the AAN that there had been no pml in going longer than every 28 days. Maybe you and your neuro can check this out and you can figure out your risk of pml compared to your risk of ms progression.

    The risk of pml is low/rare, but for those that got it I can no longer find info on pml, it was available from a man in Germany (I think). The info told us where, how long they had been on Ty and more.

    Good luck,
    Linda
    Linda

    Comment


      #3
      Hi Linda -
      I saw the neuro yesterday. I will be receiving a 4 week infusion next week, but after that, I can either go to 6 weeks or switch to Aubagio. After reading about Aubagio's side effects, I'm leaning towards trying at least 1, maybe more of the 6 week interval Tysabri infusions. My risk of PML is 8 in 1000 right now. If I become ill by waiting 6 weeks for my infusions, then I'll switch. If I'm going to be ill, I may as well do it without the PML risk.

      My post sounds very "calm & cool," but I'm a bit of an emotional mess trying to process everything. I'm just so very sad that my 2 years of feeling so well are over. Doctor said Aubagio works about the same as Copaxone. And I know how I felt on that drug for 3 years.
      ~ There's nothing so peaceful as watching my pets sleep ~

      Comment


        #4
        Dear dognapper,

        Before Tysabri on less effective MS medicines you expressed how poorly you were doing. After taking Tysabri you expressed how well you have done. You mentioned not wanting to put your husband at risk you being in a nursing home due to PML but what about putting him through your life without Tysabri? Your health was pretty bad and getting worse was my impression of your description.

        You don't know if Tysabri will lead to PML but you do know that it has slowed MS progression tremendously in your life. As Linda said, going longer than 4 weeks between infusions has reduced the risk of PML. Apparently, the additional time gives your immune system time to keep JC from infecting the brain; that is the theory.

        As people age they logically have more chance of becoming JCV+. As with any exposure it is a matter of living... being out there in the world where you can catch a virus.

        Aubagio works about as well as the other meds you were on so you know what to expect with Aubagio. Health comparable to what you now enjoy may be an unrealistic expectation taking it.

        Everyone is tormented by treatment decisions so you are in good company! I am in no way mentioning anything of a political nature by saying this but one of the guys running for President is Ben Carson. You may want to check out a book he authored a few years ago titled, Take the Risk. It has helped us understand risk more clearly. There is risk in life. What you do may be risky but don't neglect to properly judge the considerable risk of what you don't do. There is risk in what you do and there is risk in what you don't do, Tysabri is one example of that.

        Best of luck

        Comment


          #5
          HI Linda

          My titer is not real high but positive, the M.S specialist and my neurologist had me me go on Tysabri anyway. They both felt it was the most effective of all and that I was progressing to fast. I will be getting my 2nd. infusion on the 24th. I had quite a few side effects but I was getting worse anyway so I will give it a longer try. My whole point is that you have to weigh the negatives and positives and go from there. They felt I would be in a nursing home soon if I did not go on it. So as usual the MonSter might win no matter what way we choose. I discussed it with my wife and she felt it was still the best option. Talk to your hubby openly about it. That should help you decide but it is of course up to you.
          Smile it makes people wonder what you have been up to!

          PEACE
          Tortis

          Comment


            #6
            Hey Tortis,
            I so wish you well Please think POSITIVE. You said the monster might win.. don't give ms any power/energy. I won't capitalize ms, I give it NO respect.

            I hope you and Tysabri do wonders together

            Dogkeeper,
            going from neg to 2.5 Are you sure it wasn't .25 ? Maybe get retested !

            I wish you, too, so well and all of us msers !! We have big, difficult decisions.
            Linda

            Comment


              #7
              Was being POSITIVE

              I was being positive saying that either way might end up in nursing home but to talk it over with hubby and go from there. I thought perky lady said it the best. Linda said
              " But how in the world do I decide how much risk is too much risk? If I were alone, it would be different, but I'm married & feel like it's selfish to put my husband at risk of me winding up in a nursing home due to PML. Talk with him about it.


              PEACE
              Tortis

              Comment


                #8
                To perkylady - LOL dognapper. I am a keepr, although I do nap frequently.

                I have decided to stay on Tysabri for now with 6 week infusions. I will make a decision as I enter the 5th & 6th weeks of each Tysabri infusion, based on how I feel. I know that I will eventually switch to Aubagio.... I just don't know exactly when. Thanks for the support from you guys
                ~ There's nothing so peaceful as watching my pets sleep ~

                Comment

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