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    #63 and JCV+

    I go for number 63 this weekend and I am JCV+. I tested positive twice.
    Tysabri has been great 1 relapse and that was from staying in a hot bathtub too long.
    I look at the statistics for JCV+ and tysabri, its starting to worry. My neuro doesnt seem concerned at all and always mentions that new drugs are going to come out.
    What drugs are immunosupressive drugs?
    I was on Avonex and Rebif before.

    #2
    Hello pballer,

    I just had #66 and I am jcv+ also. My neuro told me he worried about me every month and he started giving me an mri every 3mos. I have decided to switch to BG-12 when it is approved.

    It was a hard decision because TY has been good for me and I also worry about a new med.

    I am glad TY has been good for you also.
    God Bless Us All

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      #3
      Over 66 and JC+ too

      I have done really well on Tysabri. Rarely any flares, only 2 that required solumedrol in a long time.

      When I went for my MS checkup 2 weeks ago, the nurse practitioner said my doctor believes people who are thin, have been on Tysabri over 2 years, and are JC positive are at increased risk for PML. He's working to see if he can get permission to give some people lower doses of the drug. However, the NP said most of the patients in this category will get moved to BG-12 when it comes out.

      Meanwhile, I've been getting my infusion every 5 weeks (for about 3 now,) and am supposed to move it back to every six weeks between doses soon.

      At first I was okay with this. But last month I had a flare that needed solumedrol. Now I've started to notice increasing fatigue and heat sensitivity, among other things.

      Things aren't that horrible, and I need to appreciate that, I know. Still, I've been really down. I miss how good I felt for so long. I worry things are going back to where they were before Tysabri.

      I have been under a lot of stress the last few months, travelling a lot too, and I wonder if I just need to give this new interval more time.

      Another MS patient said I should tell my doctor that things are getting worse. I've heard BG-12 isn't as good as Tysabri. Frankly, I'd rather have the risk of PML.

      I'd like to hear what others have heard about BG-12, and get some advice on whether or not I can request staying at 5 weeks between infusions and not moving to 6?

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        #4
        Long Term Tysabri

        I have also been on Ty for about 65 months and had a JCV + test. My Neuro. has not been concerned about it, he says that he has other patients on even longer and positive JCV test also. I was really stressing out before the appointment worrying that I might be taken off Tysabri and where would I be then. That was Feb I'm still on and doing okay. I have't had a single relapse in all this time and feel very fortunate. The thought of having to go on still another drug at this point is depressing. Beth

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          #5
          I was JCV+ before my first infusion. Number one rocked, bye bye cane ! Number three August first! Now I just need to get motivated to get off my butt and start working out now that my legs are getting better and a new lease on life ! 27 years old, been sick since I was ten booo haha.

          Comment


            #6
            Originally posted by andy123 View Post
            I was JCV+ before my first infusion. Number one rocked, bye bye cane ! Number three August first! Now I just need to get motivated to get off my butt and start working out now that my legs are getting better and a new lease on life ! 27 years old, been sick since I was ten booo haha.
            Awesome!!! It gives me hope that I will see some improvement with my next infusion. I take #2 on Aug. 3
            I am JCV+ also.....this scares! I hope that I find that the benefits outweigh the risks

            Comment


              #7
              Love Tysabri

              That's interesting that your neurologist isn't concerned enough about JC+ to take you off--encouraging!

              One dose and no cane--wow! It's worked well for me, also, and I don't want to have to go off it. I've decided to wait out the current down time (not too big a relapse, so I'll see if it's just stress.) But whether I request to stay on every 5 weeks or agree to move to every 6, I think my results are so positive on Tys that I don't want to take a chance on anything else until I see how well the new drug is working.

              Comment


                #8
                Hello thinkpink

                You give voice to many of the concerns other patients harbor, I’m sure. Tysabri has been so good for you that you hate the thought of switching to something with no track record in MS other than the Define and Confirm Phase 3 Trials for BG-12. It’s a tough decision for everyone who has had success on Ty.

                The results of those trials are readily available and BG-12 is very good but not as good as TY, especially if the two trials are combined and the result is compared with TY. Whether combining the 2 trials and comparing them to TY is a legit method of comparison must be left to the individual, I’m sure some researchers would cry foul. But if perfection isn’t attainable, often common sense must do.

                Best to consult with your neuro (not np) on the wisdom of going 6 weeks between infusions. Get your information and understanding directly from the neuro. He or she will be most likely to give you the clarification necessary which may abate some of the stress. Write down questions and concerns so you don’t forget and kick yourself later for not asking.

                Absolutely inform your neuro about the increasing fatigue and heat sensitivity. Get a better understanding of your neuro’s treatment philosophy specific to you. Especially the 5 or 6 week thing. Understand where he is heading and why. Ask.

                Stress is such a big factor in health. Recognizing it is a great first step to mitigating it and you are doing that.

                You said “frankly, I’d rather have the risk of PML”, tell your neuro that. If that becomes a hard position and your neuro insists on moving you to BG-12. Get a different neuro who will allow you to stay with TY. Just make some calls and tell them the situation.

                You have been on Ty a long time and you are JC+ so you have two risk factors. If you were on an immunosuppressant before TY, you would have all 3 risk factors and fall into a risk category of approximately 1 in 100 of getting PML. Nearly identical to the 1 in 99 odds of being killed in a vehicle accident.

                Being thin is not a risk factor in any lit I have ever encountered about TY. Also, if you do go on BG-12, I would think there would be advantages to being thin rather than not. The health and longevity of most Americans would be improved by being thinner.

                Remember, for some people BG-12 may work better than TY. Remember also that there very likely will be a washout period of about 3 months coming off Ty before taking BG-12. 3 months seems to be a Biogen standard for washout. That period can be tricky.

                You certainly should minimize stress during that period of immune reconstitution because problems can present during that period. It’s very possible no major problems will arise during those 3 months but if you’ll be better prepared if they do by educating yourself a bit beforehand.
                Good luck to you. MS treatment decisions are so difficult.

                May your choices bring you peace, more peace than before making them. Solid understanding of where your neuro is heading your treatment will be the starting place for what you decide. It's your life, not his.

                Allow comfort and courage to rule your heart and thoughts. They will, I’m sure.

                Comment


                  #9
                  Thank you, Myoack

                  I appreciate your words of advice and encouragement. My doctor is involved in new testing, etc., so he's very good, but I only see him once as year, as opposed to the np. This gives me encouragement to ask to see him and take a list of questions to ask. And you're probably right--if he won't let me stay on Tys, there may be another neurologist who will. I will research it all carefully before I make a decision that major, regarding either switching meds or neurologists. Thanks!

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