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    #61
    Happy belated birthday!! How did it go with your first dose of Gilenya??

    Comment


      #62
      Lol, Thanks Kathy, but I probably should have mentioned the date and not the day of the week. It was Weds in Aust when I wrote the post, but only Tues in the USA. I don't take my first dose until Tues the 24th. Thanks for the birthday wishes though

      Spoke to my sister about my niece that takes gilenya. Apparently she had a serious reaction with her liver 3 weeks into taking it. Her neuro took her off it for a month and when her vital signs were back to normal she went back on it. She has been on it for close to a year now, without any further issues. Sounds strange to go back on a drug that she reacted to, but obviously they knew what they were doing.

      I picked up the medication yesterday from my chemist and noticed the 28 days tablets equal only 14 grams. That is half an ounce. According to my calculations, gilenya costs 3 times as much as gold.

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        #63
        Hi I have been reading posts and learning a lot. I have been experiencing symptoms and was sent for an mri two weeks ago. MRI came back normal and was told to follow up with primary. I am still having symptoms and really just feel worse that they did not find anything. I started with having eye problems and being told I had weak eye muscles in my right eye. In the last year I have had fingers going numb, losing my balance and falling, and dizziness, now and then. Last night I woke up with both wrists hurting so bad almost felt like they were sprained. My eyes is still blurry, and is slow to move from right to left, also have double vision when looking to the left. I was sent to an opthamologist and ruled out any eye disorders. Then referred to nuerologist and only saw the nurse practitioner. She ordered the mri. Now they are saying my slightly elevated blood sugar could be the reason for the eye problems. My vitamin D is very low and just started taking vitamin d once a week pill.

        Comment


          #64
          I can't let it go. Today in Newsweek the report the EU is beginning an investigation on Gilenya after 11 unexpected deaths..

          http://www.businessweek.com/news/201...nt-deaths.html

          if it quakes like a duck if it walks like a duck..then its...

          IMO europe and australia have been much too excited and willing to prescribe this drug. a little bit of crowd mentality(psychology) going on.
          xxxxxxxxxxx

          Comment


            #65
            Thanks 9485,

            I am glad you care enough that you couldn't let it go without doing your best to make me aware of the issues surrounding Gilenya.

            I have just had a sleep deprived night, so waking up to this news, well, I will need time to digest it.

            I would like to think Austn neuro's operate with the conservative cautious behavior of neuro's in the US. I am not sure gilenya is prescribed more per capita here, but if it is, it might be because no patient here is restricted by cost.

            The article is very vague with the details of the death. Hopefully, more info will come to light over the next day or two.

            My first reaction is 30,000 people use the drug. If the average life span from commencement is 45 years, then 500 deaths per year would be expected. Probably something wrong with my logic here, but as I said, I am not thinking so sharp today. It is Saturday here, so hopefully I can get a nap in.

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              #66
              Tysabri was responsible for 3 deaths after 2 years on market...they did not know how tysabri caused it so the pulled it off the market for a year between 2004-2005 until they figured out what was happening...they don't know if GILENYA is responsible for 11 deaths. ouch!

              with tysabri, on autopsy, it was discovered someone, anita smith, did not have ms. but she was afraid she had ms, so she jumped on the newest most aggressive med possible to prevent a future she was afraid would happen.

              on autopsy it was discovered she did not have ms, she was killed by a med to treat a disease she did not have.
              the newest most aggressive med possible to prevent the future she feared...it did prevent the future she feared by preventing any future for her....

              you can read an article on her story on my home page... tysabri page 2.
              xxxxxxxxxxx

              Comment


                #67
                This article adds that the last death was in the US but it was unknown were the previous 10 deaths were but they were reported to the drug database that monitors side effects from drugs in the European Union.

                Novartis is changing their recommendation for the first use of the drug. Previously they had recommended a patient be observed for 6 hours after taking their first dose, now they are recommending continuous heart monitoring by electrocardiograms and measuring bp and heart rate every hour. in certain patients monitoring should be extended.

                Look my birthday is in April, i'm tarus the bull. No one can push me into anything. I graze quitely on the grass observing my surroundings until i feel the time is right to charge, then i charge.

                take some advise from a bull. this is not the time to charge. hold your ground instead. MS is not a disease that needs immediate treatment, there is time to be certain of maintenance ms medication needs. either change to something else known & start soon. Or wait until they find a cause for these deaths before starting it. there is time to do it either way.

                Source the Associated Press:

                http://blog.al.com/wire/2012/01/nova...erosis_dr.html
                xxxxxxxxxxx

                Comment


                  #68
                  Gilenya could be prescribed more there because people are not restricted by cost, yes & doc's might be less cautious than US doc's, because doc's cannot be sued in an NHS.. if a doc gambles here we can retaliate financially..
                  xxxxxxxxxxx

                  Comment


                    #69
                    11 in 30,000 is equivalent to 0.36 in 1,000 deaths. that's after 4 months post marketing, i believe it came out in September?

                    tysabri was approved with a risk of 1 in 1,000 PML after 2 years post marketing and it was approved as a 2nd line treatment for aggressive MS after a 1st line drug had been tried and was not successful.
                    xxxxxxxxxxx

                    Comment


                      #70
                      Hi 0485,

                      I love your passion. It is what I would expect from a Taurean. My ex wife was a taurean, so you will have to understand if I do not always agree with all you say, lol.

                      On a serious note, I am concerned with the latest developments, and intend to call my ms neuro on monday for guidance. She prescribes all dmds and has no hidden loyalty to any drug company. She may just think it is worth delaying any medication until the dust settles.

                      Australia isn't really much different to the US. I have been there a dozen times and have made use of your medical system over the years for my kids. One thing that is the same is we can (and do) sue doctors. We might not be as litigious as in the States, (yet), but there is nothing to stop us. You must be thinking of communist countries. I am not 100 % sure why we don't sue as often, although I do know punitive damages rarely reach the dizzy heights of the US. So, I would say, yes we can sue, but right now suing doesn't bring out the opportunists, at least not as many.

                      Cost is relevant to how often it is prescribed in the US. Some uninsured are able to find assistance packages, but many have to go without. On these forums their are many that want Gilenya, but are unable to finance it.

                      Comment


                        #71
                        Yes i am very serious,intense, & single minded. Difficult to get along with. Taurian traits magnified from being an older sister & CSI shows. Interesting your ex was a tarus too. i would have liked to have a "meeting of the minds" with her on the subject at hand. if she's equally intense; she might be if tarus?.

                        i looked up your sign because i thought it was a water sign and i wanted to tell you to go cool your heels for a while -go graze on seaweed or something. lucky i looked your sign and found it was an air sign, then i couldn't think of an air equivalent to grass & seaweed. so i had to let it go.

                        most i know about australia: i like the national colors, that voting is compulsary, i did not know one could sue in a nhs. that i just learned. lot of australian actors/actress here too.

                        we are working on nhs here and we are warned frequently we will lose the ability to make a physician, manufacturer of heath care product accountable for future consequences. Its interesting you didn't lose that with a nhs. i thought that would be gone with our new nhs.

                        i worked in engineering before and i did have to develop risk statements for new products. As was explained to me, the US has more litigation because our laws differ from the rest of the world. When some one sues, in the US, it is assumed the person/product being sued is negligent until they prove they are not.

                        in the rest of the world i was told the laws are opposite, the accusor has to prove negligence has occured and the person/product being sued is innocent until negligence is proved.

                        that's why in the US if you buy a cup of coffee in a styrofoam cup, there is a warning printed on the cup "caution contents inside may be hot"
                        because a woman bought a cup of coffee at mcdonalds and spilled it on her lap, causing burns to her thighs. she sued mcdonald for not warning her that the contents of the cup(cofee) was hot and won because mcdonalds was not able to prove they were not negligent in selling a cup of hot coffee. now when you buy a cup of coffee at mcdonald in the US there is that warning on the cup and engineers spend days thinking about warning that need to be printed on products to be able to prove they are not negligent in a court of law if accused of anything. some very simple & obvious warnings.

                        interesting you go all the way to the us to access health care for your kids---that would have to be private pay?

                        let me know if you do decide to delay until the dust settles, it will settle me down somewhat and you won't be internet stalked. i'll spend more time focused on tysabri conspiracy theories.
                        xxxxxxxxxxx

                        Comment


                          #72
                          Originally posted by 0485c10 View Post
                          that's why in the US if you buy a cup of coffee in a styrofoam cup, there is a warning printed on the cup "caution contents inside may be hot"
                          because a woman bought a cup of coffee at mcdonalds and spilled it on her lap, causing burns to her thighs. she sued mcdonald for not warning her that the contents of the cup(cofee) was hot and won because mcdonalds was not able to prove they were not negligent in selling a cup of hot coffee.
                          Actually, there's some urban myth in that story.
                          She didn't sue because she bought hot coffee that was hot. She sued because McDonald's (as a national chain of stores) insisted on serving coffee that was abnormally hot. Scaulding hot, as it were. Much hotter than other fast food chains and restaurants.
                          For no good reason other than that's the way they do it.
                          McD's did cool down their coffee as a result of the suit. For a while, about 6 to 8 months, then went back to what they were doing before.

                          Just a Cancer butting in again.

                          Comment


                            #73
                            Originally posted by Bob698 View Post
                            Actually, there's some urban myth in that story.
                            She didn't sue because she bought hot coffee that was hot. She sued because McDonald's (as a national chain of stores) insisted on serving coffee that was abnormally hot. Scaulding hot, as it were. Much hotter than other fast food chains and restaurants.
                            For no good reason other than that's the way they do it.
                            McD's did cool down their coffee as a result of the suit. For a while, about 6 to 8 months, then went back to what they were doing before.

                            Just a Cancer butting in again.
                            thanks for the clarification on an urban legend that persists.

                            we would sit in a room just trying to think about all the warnings we had to think of using this as a water mark.
                            of course later in the afternoon, we would get slap happy had a created warning like: Caution waking up may cause unpredictable harm.<lol>we were slap happy by the time we had spent thinking of warnings.
                            xxxxxxxxxxx

                            Comment


                              #74
                              Hi 0485,

                              Getting completely off the topic, I hate that we have compulsory voting. I can see the arguments for and against it, but IMO, too many people that have no interest or care end up voting. At least in the states voters actually have an interest in who runs their country.

                              I think you may be right about the negligence thing. I have never tried suing anyone, but assume I would have to prove negligence here. I have heard of the coffee cup scenario, but thought it was an episode of Seinfeld when Kramer won his case and settled for free coffee for life.

                              I have never travelled for medical care. It is just a couple of times we needed to use the US system. Once my daughter injured herself in Hawaii, and once my son was sick in Florida.

                              Back to the subject at hand, I spoke to my niece directly about her experience with Gilenya. I did not mention the new scare as it would not be fair to upset without substantial facts available. Anyway, she told me she has felt like Gilenya has given her her life back. She says it is like a simple vitamin tablet each morning and never gives it a second thought. Of course this does not detract from the decision I have to make. Just saying

                              I have no idea how much in common you would have with my ex. She moved north to queensland years ago and left me with the kids (which is alright by me )

                              Comment

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