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Need help to decide! Found out I'm JC positive!

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    Need help to decide! Found out I'm JC positive!

    I just found out that I'm JC positive and not sure what to do
    now. I was diagnoses in August 2013 and have only been on Betaseron but made no improvement actually my symptoms have worsened. I don't think I've relapsed at all just the medicine didn't agree with me. I was told that Beta was one of the more effective injectable so now my neuro wanted to go ahead and do Tysabri. Now I don't know what to do. I'm 23. My MS hasn't disabled me physically but I get horrible cog fog everyday(to the point I where I can't drive), get fatigued easily and have burning pins and needles in my legs almost constantly so I have to take pain meds( which only help to a certain degree). Ms has taken over my life these last few months. I don't know if I want to take the 0.4% chance of getting pml. If anyone is JC positive and on Tysabri I would like to know how you made the decision. Thanks in advance!
    Dx RR August 2013
    DMD Betaseron
    Nursing Student (RN)
    Mother to 1 year old

    #2
    I understand that for the first 2 years on Tysabri the odds of pml are almost nil-maybe 1 case ??
    Tysabri has the best efficacy of the ms meds.
    What are your jcv+ #s-the titre.

    Find out all that you can about Tysabri and then decide what you choose.

    I just got my 90th infusion for half this time I didn't know if I was positive or negative-wasn't available. Then I had the test was told I was positive-stayed on Ty... 6 months later had the test done-told I was negative. Then for 2 yrs stayed neg and now told positive but, low titre #s. I will cross bridges as I come to them but, I love Tysabri and am so very grateful for the QOL it has afforded me

    Good luck and my best wishes
    Linda

    Comment


      #3
      For me, there would have been no way any Neuro could have convinced me to go on TY at the age of 23 unless I was substantially progressing....fast...really fast. Then there is no option.

      Have you had another set of MRIs done to see if there was any progression or changes in the lesions?

      Has your Neuro discussed any of the other meds like Tecfidera or Copaxone?

      I kept TY in my back pocket, as I changed meds. I knew when the time was right. At that point, there was no hesitation on my part, and I pulled that TY card out at the right time and I took the PML worry and threw it out the window.

      You possibly have other options right now.
      Katie
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

      Comment


        #4
        I TOO AM JCV POSITIVE AND ON TY, JUST HAD 17TH INFUSION. MY NUERO, WHO IS AN MS SPECIALIST, PUT ME ON BETASERON FIRST AND IT WAS AWFUL. I GAVE IT MY ALL, I WAS SHOCKED WHEN IT DIDN'T WORK FOR ME. I JUST NEW ONCE I GOT SOME MEDS I WOULD GET MY LIFE BACK AND BE "NORMAL" AGAIN. NEWLY DIAGNOSED AND STUPID.

        STARTED BETA ON DECEMBER 5TH AND GAVE IT 5 MONTHS, I GOT PROGRESIVELY WORSE. I FELT HORRIBLE THE WHOLE TIME BUT I WAS HOPING I WOULD PULL OUT OF IT AND THE "SIDE EFFECTS" WOULD GO AWAY WHEN I GOT USED TO IT. BUT IT DIDN'T. QUIT THE FIRST OF MAY 2012. WITHIN 2 DAYS I WAS INSTANTLY BETTER.

        SO IN JULY 2012, 2 MONTHS LATER, I STARTED TY. I SAID I WOULD NEVER DO AN IV EVERY MONTH, I HATE IV'S WITH A PASSION, SO TY WAS OUT OF THE QUESTION FOR ME. WE GOT ALL THE PAPERWORK AND TESTS READY FOR ME TO START GYLENIA AND THE MORE I READ AND RESEARCHED GY & TY, I CHANGED MY MIND AND DECIDED ON TY. IT'S BEEN SO GREAT FOR ME!! HOWEVER I AM 52 SO I THINK AGE MIGHT MAKE A DIFFERENCE IN THAT DECISION.

        I'M GOING TO HAVE TO COME OFF NOW AND I'M SOOO WORRIED ABOUT THE REBOUND EFFECT. I DON'T KNOW WHICH IS SCARIER THE THREAT OF PML OR THE REBOUND EFFECT. I WOULD STAY ON TY FOREVER IF I COULD, I'M PRAYING FOR A MIRACLE TO KEEP US JCV+ PEOPLE ON TY.

        MY DR HAS MOVED ME TO 8 WEEK INFUSIONS AND THE FIRST 8 WEEKS WAS FINE BUT THE SECOND 8 WEEKS, WHICH WAS THIS MONTH, JUST AFTER NEW YEARS, I HAD MY FIRST EXACERBATION SINCE BEING ON TY.

        I KNOW BEING SO YOUNG IT HAS TO BE HARDER TO MAKE THESE DECISIONS BECAUSE YOU HAVE THE WHOLE PRIME OF YOUR LIFE TO THINK ABOUT. CHILDREN, ETC. NO ONE CAN MAKE THIS DECISION BUT YOU. BUT MY ADVICE IS TO STUDY, RESEARCH, READ EVERYTHING ABOUT ALL THE MEDS. THEN WITH ADVICE AND COUNSEL FROM YOUR DOCTOR AND THE PEOPLE WHO LOVE YOU MOST, MAKE THE BEST INFOMED DECISION YOU CAN AND DON'T LOOK BACK. YOU CAN'T SECOND GUESS YOURSELF. IT'S LIKE MY DAD USED TO SAY "YOU'LL SHOULD'VE ALL OVER YOURSELF"

        GOOD LUCK, I'M WISHING THE BEST FOR YOU, I HAVE CHILDREN YOUR AGE. MY HEART WILL BE BROKE IF ANY OF THEM HAVE TO GO THROUGH LIFE BATTLING THIS DISEASE.

        Comment


          #5
          Hi Hlawman,

          I would ask to be retested and also find out tour titer number. This gives a better idea of risk.

          You are being asked to make a tough decision at a young age. Depending on your relationship with your neuro, don't be afraid to ask what they would recommend if it were their child or sibling. Also make sure you discuss withdrawal from Ty once you stop and what your choices will be. Finally, if you are positive, how often will your titer level be checked and will frequent MRIs be needed.

          From my understanding, Ty is the most effective drug we have for slowing progression. While not the intent of the drug, some people have had symptom improvement. I discussed some of the above with my neuro. He is little more conservative and feels they have a better handle on Ty risks and usage than the new oral drugs. Once in a while, I wonder if I had started Ty earlier, would I have less symptoms now.

          My decision was a little easier since I was 48 at the time.

          Please let us know what you decide. Hang in there.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hi Hlawman,

            I would ask to be retested and also find out tour titer number. This gives a better idea of risk.

            You are being asked to make a tough decision at a young age. Depending on your relationship with your neuro, don't be afraid to ask what they would recommend if it were their child or sibling. Also make sure you discuss withdrawal from Ty once you stop and what your choices will be. Finally, if you are positive, how often will your titer level be checked and will frequent MRIs be needed.

            From my understanding, Ty is the most effective drug we have for slowing progression. While not the intent of the drug, some people have had symptom improvement. I discussed some of the above with my neuro. He is little more conservative and feels they have a better handle on Ty risks and usage than the new oral drugs. Once in a while, I wonder if I had started Ty earlier, would I have less symptoms now.

            My decision was a little easier since I was 48 at the time.

            Please let us know what you decide. Hang in there.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Tortis

              Hello Hiawman, I just ran across your post, it could have been mine that I just posted last week. What if anything did you decide, we both are in a bad position. I have not decided yet and the more I read the more indecisive I become which is very unlike me. I have not received a index number yet so that is my excuse for not deciding yet I wish you the very best and I will be watching for your posts.

              PEACE
              Tortis

              Comment


                #8
                Did you discuss the oral meds w/ your neuro? They can lower your immune system so I would speak to him about JC pos and the oral meds.

                Comment


                  #9
                  How I chose Tysabri

                  I am a 61 yr old mwm on my 13th ty infusion. I have 41 lesions, one massive black hole and many problems. But I still function at a very high level, working 50-60 hrs a week, driving, and still producing. I used copaxone and Avonex, they both failed, I had serious relapse episodes with new lesions.
                  I have a question. I have not seen my nuro in any of the last 11 visits or infusions, all care is being handled by a PA. I have had 5 MRI's in the past year, but I am only seeing the PA or RN. Am I entitled to see the DR. at least in the months when I have an MRI?
                  I would like to know what he is seeing from his personal perspective, not second hand info. Lesions are changing, I can feel it, but the PA disagrees with me. What Should I do?

                  Comment

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