Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Saturday, May 26, 2012



My Tysabri Diary... 

I received very sad and disturbing news from my neurologist..., he ordered a JC virus blood test to see if I carried the JC virus antibodies... well it came back positive that I carried the JC virus antibodies and he advised me that none of his Tysabri patients that were JC virus positive were on Tysabri, he was not willing to take the risk of me developing PML, and that he was discontinuing my infusions.  He wanted to put me back on Avonex or Copaxone (both of which I was on  before and both did not work for me) or he wanted me to try Rebif or Betaseron.  When I told him no to all that  he suggested, advising him that interferons and glatimer acetate do not work for me, he suggested that I receive monthly infusions of Solumedrol (are you kidding me?).

When I started arguing with him that he was not willing to risk me developing PML (we started arguing about monitoring any new symptoms I might develop, checking my CD count, plasmapheresis exchange) but was willing to risk putting me on pack on interferons, glatimer acetate or suffer the side effects of monthly steroids, I told him absolutely not and that I wanted a second opinion.

All of this was very upsetting to me because I worked so hard along with other MS patients to get the FDA to reapprove Tysabri, struggled so much with Kaiser to get back on Tysabri to begin with, and more than likely none of their neurologists would be willing to continue Tysabri infusions if their MS patients were carrying JC virus antibodies, then to be left with no treatment options that work for me, and hope that I can find a numerologist within their network that will put me back on Tysabri before I have another bad relapse, I feel like I'm back at square one all over again.

So I won't be posting again unless I get some good news..., it has been wonderful knowing all of you and I will never forget your friendships and the support you have shown me over the years.  From the bottom of my heart, I will miss you all.

Take care everyone --

Love, Lauren

15 Comments:

  • At 2:54 PM, Blogger Cyndee said…

    Lauren, I go to Woodland Hills to Neurologist, Dr. Bronstein. He has NEVER pushed me to have that blood test. I went to your doctor once and he told me I HAD to have the blood test or he wouldn't be my dr. Well, I told him I wouldn't have the test. I called Dr. Bronstein and told him I still wanted him to be my MS doctor. When I went to get my next infusion, there was a form in the chart for that blood test. I told the infusion center, No, I wouldn't have it, and he wasn't my dr., Dr. Bronstein was. So, I never have had that test. Call W.H. and get an appt. with him. I PRAY you can get back on Tysabri.!!

     
  • At 10:39 AM, Blogger Alex P said…

    Lauren, I hope you're still reading the comments here.

    My JCV test came back positive, too. It's your neurologist's job to help you evaluate and balance the risks. There are known risks to ceasing Tysabri (http://goo.gl/p75K7), and newly measured risks to staying on it despite the positive test (http://goo.gl/xhPKw Summary only. Ask a library or your doctor.) Once I tested positive, with my neurologist's help, I decided to keep taking Tysabri and will likely have more frequent MRIs to look for changes. Infusion 60 or so is coming up. Your overall medical history will help decide.

    I was a bit surprised at the suggestion of switching to regular Solumedrol. The regular pre-infusion interview goes something like: Any chemo? Any steroids? Any antibiotics? No? Good to go! My neurologist tested four patients, three were positive (as of about two weeks ago.) He and his partner are studying the risks until a protocol is developed.

    I hope all will be well with you.

     
  • At 3:14 PM, Anonymous Anonymous said…

    Lauren it's been years since I used to see you in a chat room and talk about Tysabri. I have been on it since the beginning like you and it has been wonderful for me. I am so sorry to hear you are JC positive. I hope you find a way to stay on Tysabri. I had a blood draw today myself and have the same fear that someday I may be told the same thing. Thank you for all you have done for so many people! Penny in NY

     
  • At 4:13 PM, Blogger Alex P said…

    Hi, everybody,

    I got and update letter from my neurologist today. He has tested eight patients and a total six were positive. He (and I assume his partner and whoever else) are working on setting up some regular monitoring for the patients who are positive. There is no plan to kick all patients of Tysabri. The message seems to be, DON'T PANIC.

    I've come around to the idea that I may have been JCV positive for all of my 60 infusions. So, monitor me, MRI me, but DON'T PANIC.

     
  • At 7:19 PM, Anonymous Cathy L said…

    Lauren, I'm so very sorry to hear your test came back positive. I have faith that you will be able to find a way to get back on Tysabri. Please hang on, we need you.

     
  • At 11:57 AM, Anonymous Anonymous said…

    so sorry and hope you are able to take the medicine you choose. you did so much for so many. klkm

     
  • At 10:41 PM, Blogger Efrain Gonzalez said…

    hello- my partner is about to go on a tysabri study. We are concerned about the ramifications of the problems that have not been mention by Biogen. Can someone tell me if this has worked for them and have this made a noticeable change in your health. thank you
    Efglez

     
  • At 5:01 PM, Blogger dnddndnfhygdsf said…

    Disregard Cyndee's response, the test is VERY important. As PML symptoms can be similar to MS symptoms, a JCV test may mean the difference between catching PML in its early stages or initially diagnosing an MS flare-up.

    I am lucky enough so far to be JCV negative. My neurologist put me on Tysabri before he knew the outcome of my test, and has said that he would have kept me on it even if I'd been JCV positive. The difference netween positive and negative with his patients is that the positive patients usually take a drug holiday after IV 24.

    In my opinion, get a second opinion. Being JCV-positive doesn't have to mean no more Tysabri, but it does mean that your treatment must be more cautious.

     
  • At 5:05 AM, Anonymous Anonymous said…

    i am still on tysabri - but found unreal benefits from having my jugular veins ballooned ala CCSVI. Your neuro won't tell you about it - but type CCSVI Before After into youtube and look at the results.

    My personal videos can be seen typing in CCSVI Melbourne

    All the best Lauren

    Mark
    (Australia)

     
  • At 1:33 PM, Anonymous Anonymous said…

    Lauren I am a retired DMD reading about Tysbari for a friend who is contemplating it as Tx.
    I would recommend looking at lowdosenaltrexone.org.
    I recommended it to a friends sister who could not write her name and thinks it is a miracle.
    It will flat cure about 2/3rds of Crones .The research for that was don @ Penn State. Read about it as an immune modulator that actually reboots and revitalizes an immune system that has many senescent characteristics . Good luck
    aajadmd@aol.com

     
  • At 9:28 AM, Anonymous Anonymous said…

    hi Lauren,
    it has been a while since I read your blog and I am saddened to hear you have stopped receiving Tysabri..or that they stopped it for you.
    I myself have the JC virus and was reconfirmed this year again, and I was advised to get off Tysabri but not FORCED TO get off it..unfortunately the offer was Gilenya/FIngolimod which isnt anywhere close to as good as Tysabri so I said NO and "took the chance"... Today was my 45th infusion..boy time flies... and I am doing fine.. of course extra caution/care is given to any attack that I have but besides that I'm still happy with this treatment and I understand why you didnt choose to go back to the non/working ones.

    I sincerely hope you are doing fine depsite their stubborness..
    best wishes from a MSer in Denmark.

     
  • At 6:13 AM, Anonymous Bev said…

    Thanks for sharing your story. I found out I have MS in March with an attack that paralyzed the left side of my body. I'm recovering with rehab and have my first Tysabri treatment today. It's been good to read your positive experience. Good luck to you.

     
  • At 8:34 AM, Anonymous Anonymous said…

    Dear Lauren, It has been many years since I last wrote to you on a specific IVMB. I wish you were doing much better and hope this is useful to you. Per my own, and many other MS specialist's, is that depending on the viral load, if the count is relatively low, many patients, along with their Drs. agreement are staying on Tysabri. The lower the viral load is suggestive of lower possibility of developing PML.

    Best wishes!! http://www.focusdx.com/pdfs/pi/US/EL1950.pdf

     
  • At 12:43 PM, Anonymous Anonymous said…

    Hello Lauren. My name is Sergio. I recently had my 47th infusion. My next neuro appointment is in February and it will be with a new neurologist to me. I'm getting ready to fight the same fight you're undergoing because of the amount of infusions I've had and I am of course positive for the JC virus. My former neurologist moved away and my new one might not want to take the "risk" of keeping me on Tysabri. I'll fight that fight if/when it comes. What happened in your situation?

     
  • At 3:22 PM, Blogger Pilar Catlin said…

    Hi. I am new to tysabri just had #6. Was told yesterday that I am now jcv+.
    My doctor is just going to watch me closer and do mri every 3 months. You should be able to stay on, mine said they have many patients that have "turned".

     

Post a Comment

Links to this post:

Create a Link

<< Home