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I AM SO SCARED !

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    I AM SO SCARED !

    So I have aggressive ms. Only have had it for about 2 or so months but its completely taking over me. My nero said I have one of the worst cases hes ever seen, Took copaxone for about a month and half and did nothing, my nero said he expected it not to work but had to try first bc of insurance, I went in today, wanting something stronger, and before I even got to say anything, he told me he was puting me on Tysabri. Said it was the strongest, but I must say, I am TERRIFIED of this PML or whatever its called, yeah Im messed up physically, but atleast im still alive and am there in the head ! I want to get better, So i want to do this, but am so scared it could damage me or kill me !

    #2
    Aw, ((((Chris)))). Take a deep breath. Get tested for JC antibodies. If you've never been exposed, you will never get PML. One third of people taking Tysabri experience a complete stabilizing of their MS. Tysabri is extremely safe in the first year of use, even if you have been exposed to the virus. Your odds of getting it are one in 1,000-10,000. Reevaluate in one to two years, but for now enjoy this huge competitive advantage that Tysabri will give you.

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      #3
      Ouch sorry to hear your situation.

      You do the best with the hand life gave you and I guess the decision for you is if you feel it is worth it or not. If your MS is aggressive I would go for it. I waited 3 years to start anything and had 11 new lesions in that time. Now I am paying the price. Fear was a big factor for me so I get where you are coming from. You have to decide if it is right for you, don't let your neuro push you into a decision you don't think is right for you. I wish I could go back and at least see if a DMD would have helped but my ship has sailed it's your turn.

      I am not on Tysabri myself but have had MS for 10 years now thankfully not aggressive like yours. If I were not in an extended study for another drug I would likely look at Tysabri and as a result know a bit about your worries.

      While nothing is totally safe in life or with meds from what I have read Tysabri is pretty much on par with other MS meds for side effects so if you tolerated copax ok then you should have no issues with Tysabri's. As far as the death thing odds are still strongly in your favor if you are just starting it and like any research these days they are making leaps and bounds so who knows next year there could be one 10x better out for you.

      From your thumbnail I'm guessing you are a new and young dad and that makes me feel for you even more I was 29 with a 3 and 8 year old when I was DX. Best of luck whatever you decide.
      Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

      Comment


        #4
        Chrisjarvis93

        I hear the fear in your comment, and since you are new to the MS diagnosis, IMHO I believe the fear comes from a lack of understanding of this chronic disease. Knowledge leads to understanding, and understanding will provide you with a path forward.

        When I was first diagnosed, I collapsed in tears! I had just retired, and I suddenly realized my "golden years" weren't going to be so golden. However, my neurologist gave me the best advice I've ever received. Since I was a librarian and had a thirst for knowledge, she told me to spend six weeks learning all I could about MS, and then come back with a decision on the DMD I wanted to use. I did exactly that, and I will go for my 55th infusion of Tysabri in two weeks. I have absolutely no side effects; day one is just like day 28.

        It sounds like you need something now, so I would immediately take the doctor's advice and go on Tysabri even if you test positive for the JC virus. You have very active MS, and it is the strongest weapon out there. It will give you time to learn more about MS while the Ty, hopefully, slows down your progression. I don't know your age, but the younger you are the greater your chances for recovery. PML in the first 18 months is extremely rare.

        Begin to learn all you can about this disease. The "Interweb" has a vast amount of information at your fingertips. YouTube videos from the MS Center in Colorado are great! There are two individuals, Vern Beachy and Lauren Parrott, who both have aggressive MS. Both are on Tysabri, and both have experienced remarkable recoveries. You can find them on YouTube, and Vern has his own channel to which you can subscribe.

        This forum has some extremely knowledgeable individuals who comment often. Myoak has great information and Katieagain,who has aggressive MS and is on Ty, are just two I can recommend. You can search for their comments by clicking on their names.

        Finally, learn to be your own self-advocate. You are the only one who knows what is best for you. I'm very fortunate that I ended up with a terrific neurologist, but many others aren't so lucky. I've learned quickly to say, "NO". Only I know what is best for me.

        Best of luck.

        Comment


          #5
          Darlin'...Tysabri is a scary drug. No doubt about that. But MS is scarier...and I did not realize that until a couple of years ago.

          Long story short...I have had MS for almost 16 years now. I have RRMS...but I developed some pretty darn scary lesions. The kind that can make your heart go thump...thump....stop and your lungs go, no I don't want to breath today.

          Walking....if I wasn't using a Rollater...it was Hello Floor.

          I have been on TY for a full year now. It has been life changing for me. "I. Actually. Got. Better." I am fully ambulatory, many of my symptoms have fully remitted and I am going on my first Vacation since 2008 this month.

          My MS Specialist did not care about my JCV status...I was too sick. He put me on TY immediately...if it did not stop the cyclical flares, I was going to be put on Chemo.

          The chances of you getting PML are small at this point. If your MS is truly acting up, your Neuro is just trying to give you the best chance at mitigating the damage.

          I have had side effects from the TY. I have drug induced Anemia. That means I had to go through a complete cardiac work up and a GI Workup to include a Colonoscopy and Endoscopy to make sure nothing was bleeding. I also had a break-through flare at the 6-month point. We handled the flare and the Anemia is being taken care of as well.

          But all in all, TY has been 2 degrees short of a cure for me. Not everyone will have the same results as I have on TY...but right now, it is probably the best drug we got, except for Rituxan...but the results are still coming in on that.

          And please get yourself back to that MS specialist that you referred to in your other post.

          RU4Cats advice about getting educated on MS was sage! Try to stop freaking out, keep us posted and we will walk the journey with you.
          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


            #6
            Originally posted by Chrisjarvis93 View Post
            I am TERRIFIED of this PML or whatever its called, yeah I'm messed up physically, but at least im still alive and am there in the head ! I want to get better, So i want to do this, but am so scared it could damage me or kill me !
            Feel the same way, I have the exact same fears. If you did'nt have these fears, you would be crazy. I have a very bad case of MS too. My greatest fear is that Tysabri will prove ineffective. We have to do something, the alternative is pretty bleak.

            Comment


              #7
              Chrisi I was on copaxone first too but it didnt work on me either I got 17 new lesions so my nuero put me on Tysabri because I was JCV- believe me it took me some convincing to do it I was also scared. Try it, it works for me dont have that many flare ups and as soon as you get JCV+ stop most people dont but when I do I will stop it not chancing it.

              Lisa

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                #8
                Hi Chris,

                I am not on Tysabri but I have a friend
                in my support group who has an
                aggressive form of MS and was put on
                Tysabri and is doing well.

                She even tested positive for JC virus; she'll be on it
                for one year, then taken off of it for several months
                then put back on it again. This way it greatly reduces her chances of getting PML. This is a better way the doc can monitor risky things.

                I don't know if this helps you feel
                better about Tysabri but things can be monitored.
                Now, if U don't test positive for JC virus your
                chances are lower of getting PML.

                Nikki
                Nikki

                Comment


                  #9
                  none

                  hi chris! i totally understand the fear but i just wanted to encourage you by sharing my little bit of knowledge about it ok. tysabri can be a wonderful help and improve your quality of life in my opinion being that you get infused only 1x a month for about an hour and then you get to not think about a dmd(disease modifying drug) for the rest of the month(its the little things ya know)!

                  ....and as far as the jcv thing its great if your dont not positive but even if you are (i am jcv+ by the way and was on tysabri for a little over 2 great years) it gives you some time to try it and see how you feel and if it works for you your doctor may offer you other treatments to avoid the pml risk thing!

                  ....im on a drug named rituxan now because my doc felt it was best to change due to pml risk but dont worry chris this thief of a disease is horrible but you'll be fine and reach out to family, friends, ms organizations etc if you need help and of course were always here if you need to vent ok.

                  Comment


                    #10
                    Relax Chris

                    I've been on Tysabri since 60 days after being diagnosed. It's been 5 years and 10 days now. I was never on anything else. If I remember right, which is tough for me, it took about 3 months for my headaches to go away. You'll be fine, don't stress, it's bad for you. I haven't had any attacks since taking Tysabri.

                    Comment


                      #11
                      Listen up!

                      Hi Chris, there is nothing to add to all the excellent advise you have been given.

                      But, I had the same fear 26years ago. The dr. Just said you have MS. I went straight to the public library. I joined a support group where there were real people with MS, some in wheel chairs. Others like me, you couldn't tell there was anything wrong with.

                      You didn't say what problems you were having. I know that your in a lot of pain now. Things will get better!

                      Comment


                        #12
                        Oh Chris, deep breath..
                        I think there was only 1 case of pml in someone on it for 13 mths. Your odds for at least 13 mths are really almost nil for pml and the possibility that Tysabri might halt/slow your progression, help with your sx and restore some function are there.

                        I do not make fear based decisions.. am aged 65 and have done quite well with my life By the way I've started by 9th year on Tysabri
                        Linda

                        Comment


                          #13
                          Hey, you're right to be scared! That just shows you're intelligent!

                          Most of the drugs that treat MS are heavy duty, and this one comes with a black box warning from the FDA. That said, I would still be on it if I hadn't developed an allergic reaction. I felt great on it, stable and strong, and actually felt it was preventative and maybe even healing, unlike the other drugs I had tried.

                          Doctors cannot administer the drug without participating in the TOUCH program. Ask your doctor about the program, how they monitor people for PML risk/symptoms, and how they take people off the drug if necessary. This is very important— there are risks to coming off the drug cold turkey so make sure you discuss this with your doctor.

                          In the beginning, my doctor would not prescribe Tysabri for more than 12-14 months, but now, more is known about the safety record and it has been so effective, I think some patients in our clinic have been on it 4+ years.

                          It's hard to know what to do for the best, but when your disease is progressing fast there is almost nothing to lose! But there is a lot to gain if you start to feel better.

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