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Anyone in touch with Alex in Germany?

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    Anyone in touch with Alex in Germany?

    Alex hasn't posted since September, I was just wondering if anyone deals with him outside of his website and if maybe he is unable to get the stats anymore. Over the years he has been posting less and less information about cases of PML. We barely get just the numbers now, but at least they are accurate. My doctor even asked for his website because he was about 2 weeks ahead of what he was able to get. Just was wondering.

    #2
    Hello LL60,

    Sorry I can't help with your request. Remember how Biogen used to report each case of PML and where the person was located? They never gave a reason why they stopped providing that information; bad press affecting sales is one guess.

    I'm careful of posting about where I find information. I could give you an exquisitely detailed account of information which got scrubbed from an internet site after I provided that information to someone who contacted Biogen. It was accurate information but was not supposed to be public, yet.

    An incredibly naive person emailed me that "Biogen has much larger issues to concentrate on... than what is said on... message boards."

    Consider that last quarter Biogen reported their net income was $899.6 million dollars on sales of $2.51 billion. Last quarter, Tysabri sales were $501.24 million.

    Avonex sales were $741 million and Tecfidera sales were $787 million. Google "Biogen sales last quarter" for several articles.

    How could a rational person can believe Biogen has better things to do than monitor internet content which could affect $300 million in profits per month? Suppose they can't afford it?

    Based on my personal experience I believe they do monitor; sorry if some find that position offensive.

    LL60, you are a friend, but some of my best sources are German and I can't share more than what those friends allow. They have their reasons and I must respect them.

    May I share an observation? LL60, you have said that your JCV titer is about half of what it was. IMO, that could indicate that JCV is not as active as it was. Your body may be producing less JCV antibody because the JCV is less active. You may want to discuss that with your doctor.

    Actually, that your titer would change that much surprises me. Interesting to see what the next test shows.

    Also, here is a link which enables individuals to find their personal PML risk on Tysabri: http://www.clinicspeak.com/Understan...RiskOnTysabri/

    Hope I haven't ruffled too many feathers here.

    Disagreement can provide a basis for discussion so it can be a positive thing, if allowed.

    Comment


      #3
      Myoak,

      Thank you so much for responding. I totally understand.

      Biogen is no help for information.

      In this day and age it is a huge mistake not to take charge of your own healthcare. I believe that with all my heart. And that is full time job. And with MS you just don't always have the energy to do that. But you have to just keep pushing forward and reading and researching and getting the information. I really counted on both Alex for the numbers and different UK websites for research. I think we have lost Alex. (my post should have said that his info came out 2 monthsbefore what my doctor would get.)

      We need to stick together and share information, not "rat" someone out just because they don't agree.

      I had an app. yesterday. We compared my MRI's from all the back to the beginning. I am doing well. He wanted me to extend even further. I want to go to 5 weeks. I am having symptoms and now they just want to give me different drugs to treat the symptoms and the ty took care of it all. But 6 weeks seems to let some stuff get though and take a hold again. But I am doing well. Dealing with it and did start on one med. One at a time.

      I get retested in a few weeks. I will let you know. Yes, to cut the numbers almost in half was pretty shocking to me too. Still higher than what most allow their patients. And I am grateful that we work as a team and I have input on my care. I wouldn't have it any other way.

      I am going to go check out that website now.
      Thank you for all the information you post. Sometimes I feel overwhelmed with trying to stay up to date on everything. Helps to have help with it all.

      Comment


        #4
        Nice easy way to get your risk. I have a chart that comes out the same. 1 in 118. Only these are old numbers, and after all this time why do they stop at 1.5 titer? Does that mean a 4.8 is no higher risk than a 1.5? Did I actually lower my risk going to a 2.4 (I think off the top of my head that was my last one.) Or is it the same because it still falls in the above 1.5 level?

        These are questions I just cannot find answers to. It seems like there really hasn't been any new information out since the end of summer.

        1:118 is not a concern to me.

        Comment


          #5
          JCV Titer Test

          Your comments about the JCV Titer test are interesting.

          My experience is as follows:
          I am JC positive and have a high titer number.
          My Neuro has over 1,500 MS patients.
          He suggested I get a Lumbar Puncture (LP), said there would be no or minimal side effects, since he uses a very fine needle.
          I agreed to the LP.
          There were no side effects.
          He had the spinal fluid analyzed and saw no PML problems.
          He also has me get blood tests and MRI's every 3 months.
          No problems with blood test or change in MRI.
          He recommended I stay on Tysabri.

          He monitors me closely.

          This is simply my experience, and I am not recommending this for anyone.

          Have any of you heard of this approach?

          Any comments are appreciated.

          Thank you,
          Time

          Comment


            #6
            Hello LL60,

            My contact info is my profile and is available for anyone who cares to use it.

            I wish I could address your question/comments here but that does not appear possible.

            You, or anyone, are more than welcome to contact me, if you wish.

            Best

            Comment


              #7
              timeupononce,
              Yes, I have heard of others who doctor monitor them that closely. Research says the quicker you find PML, the better the outcome, so I hope your close monitoring brings you peace of mind.

              My oak,
              I see Alex is posting again.
              I mean to email you, but life has just been keeping me busy. As it should be. I hate it when MS consumes too much of my life. I have only so much energy, so I much choose wisely how I use it.

              My last titer test was up again. My doctor is saying go off of it. I am saying no way.

              But I will have to recheck and recheck again everything I have and read some more and truly try to make an informed decision. Doctor is not much help, and Biogen is no help at all.

              I will give up this drug that works wonders for me kicking and fighting, but I am afraid I may soon have to do just that. What a risk that is. Not sure as of yet, I am willing to take it.

              You all have a Merry Christmas in however you celebrate. Enjoy all the good about the season. I love all the lights. And the baking. I am gathering up everything I have and have been doing more baking this year than I have in the last few years. Love it. Have little hands to help and that is an experience in itself.

              Comment


                #8
                Hi LL60,
                maybe talk to your neuro about Retuximab ( Retuxin ). Less pml and pretty good track record for ms. Ocrilizimab (sp) is in phase II trial for ms, when approved it will cost MORE and I'm pretty sure they are the same med; FDA wouldn't approve Retux for ms-it is an RA med.

                If I can't find Alex's address, used to use it all the time can I find it in your profile ?

                Merry Christmas and Happy New Year !!
                I've enjoyed Chanukah
                Linda

                Comment


                  #9
                  Myoak,
                  thanks for the risk calculation. It is exactly what my neuro said it was maybe he used the same format
                  My jcv is less than .9, I've been on Ty longer than 49 infusions: my risk is 1/2500 !

                  Merry Christmas and Happy New Year !!
                  Linda

                  Comment


                    #10
                    LL60,
                    FOUND IT
                    Linda

                    Comment


                      #11
                      If I understood correctly there are supposed to be updated risk numbers out shortly from biogen. Given the long track record the numbers may not be changing much. One source told me they were going to update every six months but we will have to wait and see if I have that right. It may be that biogen is only going to update the number of PML cases every six months, publically anyway. Monthly number of PML cases are more difficult to find since biogen refuses to publish them. Individuals have to spend a great deal of time compiling PML figures from numerous other sources. Common courtesy is so last century.

                      Comment

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