tag:blogger.com,1999:blog-3500936220214961312.post1137484569522486927..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Of the 75 Tysabri patients who developed PML, 15 patients have died to date.Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-3500936220214961312.post-87064768928713362702010-11-19T18:36:13.019-05:002010-11-19T18:36:13.019-05:00Dana, you're welcome! I really do hope that T...Dana, you're welcome! I really do hope that Tysabri does work well for you.<br /><br />Che Koala, that would have been a great time to pick the brains of the Biogen reps. However, it is highly unlikely that real answers would have been given. :(<br /><br />mypc2468, where to start? I don't allow spamming on my blog. I do allow differences of opinion, even if they come with agendas. Courteous decade is welcome.<br /><br />However, what you have posted here does nothing to further the discussion. Perhaps if you were to post with a viewable profile, and fewer irrelevant and red-herring questions, then we could have a respectful talk.<br /><br />I am undecided whether to allow your comment to remain on my blog since spinal cord injury is beyond it's scope. But I do thank you for deleting the 2nd comment on your own. <br /><br />To answer ONE of your questions - NO, tysabri is not reserved for the sickest of MS patients. And I would venture to guess that the vast majority of tysabri patients have NOT taken other chemotherapy agents.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-66361438008528009732010-11-19T18:02:06.181-05:002010-11-19T18:02:06.181-05:00Is it true that according a policy link on myhealt...Is it true that according a policy link on myhealthcare.com , Medicare won't pay for Tysabri until a patient has taken other MS drugs?<br /><br />myhealthcare.com/policies/medicare/Tysabri_Policy.pdf<br /><br />Is it also true that the US VA hasn't approved Tysabri for veterans with Crohn's disease even though the FDA approved Tysabri for that indication back in Jan 2008?<br /><br />Are MS patients taking natalizumab the sickest of those with MS?<br /><br />Isn't Tysabri or natalizumab commonly given to MS patients who have FAILED other MS therapies like interferons & glatiramer acetate?<br /><br />Haven't a good percentage of those same MS patients also taken chemotherapy or large doses of steroids like prednisolone?<br /><br />Are you sure there is no problem with taking all these different drugs before getting Tysabri ?<br /><br />Didn't Tysabri go through the same clinical trials as all the other MS drugs? <br /><br />Does Tysabri seem to be getting different treatment by the FDA & VA government officials than older MS drugs?<br /><br />Aren't the big pharmaceuticals dropping their smaller molecule drugs and moving to the newer monoclonal antibodies, because they are safer? <br /><br />Doesn't the latest research show the increased reservoir of stem or progenitor cells (aka CD34+) mobilized by natalizumab aren't relevant in getting PML (PMID: 21078695) ?<br /><br />If you're one of those MSers lucky enough to get natalizumab, shouldn't you at least act to help some others get up from their wheelchairs?<br /><br />Do US combat spinal cord injured still get the old steroids?<br /><br />Will 200 Saudis get natalizumab to see if it helps them "ambulate" in clinical trial NCT00871780 ?<br /><br />And as for Made in USA Tysabri, is it true that the Department of Defense will FUND a small clinical trial of an OLD FRENCH drug called riluzole in NCT00876889 for spinal cord injury ? <br /><br />Is it really true that 1 dose of natalizumab, the only FDA ok'd alpha4beta1 integrin blocking drug, moblizes an average 6 fold increase in the blood of MSers per PMID: 18195093?<br /><br />Is it true that the US institution/guv'mint stopped that research on stem cell mobilization per PMCID: PMC2438208 ?<br /><br />Is there any basis to believe that the US guv'mint doesn't want to support any preclinical research with alpha4beta1 integrin blocking drug, (like natalizumab?) that get crippled rats to support their weight with just 2 doses per PMID: 19038604 ?<br /><br />If you're pleased with your natalizumab, will you please petition your US government to mandate an overseas clinical trial of natalizumab for US combat troops who may be spinal cord injured?<br /><br />Don't they, of all disabled Americans, deserve at least the freedom to choose?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-15961918191747801952010-11-19T02:42:28.280-05:002010-11-19T02:42:28.280-05:00Thanks for this Lisa - even though the elephant in...Thanks for this Lisa - even though the elephant in the room is of course how those who got PML but did not die are doing, still very helpful just to read some up to date info given the usual paucity out there.<br /><br />Have just been at seminar today where there were plenty of Biogen rep's - aren't I wishing that I'd read your post before rather than after ... wouldn't I have been most keen to ask a few pointed questions of them if I'd read it prior!??<br /><br />cheersChe koalahttps://www.blogger.com/profile/09224701833663123033noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-3913502027808378342010-11-18T16:06:38.761-05:002010-11-18T16:06:38.761-05:00HI Lisa-thank you for adding this list!
It is fr...HI Lisa-thank you for adding this list! <br /><br />It is frustrating for there to be this existing knowledge out there about "the other 80%" not being shared with the public. I have to say however, I'm not surprised that we're not seeing a whole lot of publication in regards to increasing cases of PML, especially as they pertain to the US.<br /><br />I'm going to dig around in my school's library database as well, and see what I can find. <br /><br />I'm glad to hear that Rituxan is working well for you so far, I hadn't thought much on the issue of other drugs also coming with a risk of PML. This was enlightening! <br /><br />Thank you for the well wishes, I'll definitely be writing on mine and Jackie's blog about my Tysabri experience once all the ducks are in a row for me to get started on it! <br /><br />Thanks again!Unknownhttps://www.blogger.com/profile/07835102711494775543noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-20863780065480508552010-11-18T14:23:40.752-05:002010-11-18T14:23:40.752-05:00Hi Dana,
I wish that we knew more about those oth...Hi Dana,<br /><br />I wish that we knew more about those other patients as well, but it doesn't seem like the company or medical folks are talking. Or if they are, I haven't read the information anywhere.<br /><br />I went back and researched the numbers a bit, compiling the counts reported each month. You can find those numbers added in the post. (I wish I knew how to create a table within a post. It would be easier to read.)<br /><br />At one point, it was true that the majority of PML cases were in Europe. Almost 2/3. But you can see that the balance has been shifting.<br /><br />I'm almost more amazed that I haven't read any articles about the sharp increase in reported cases compared to one year ago.<br /><br />Tysabri seems to be a powerful drug which is helping lots of folks. I hope that it helps you!!<br /><br />I really am glad that I started using Rituxan (which also carries a PML risk). It works great for my RA and I'm hoping that it is working for the MS too. I haven't had a massive attack this year, so that's good.<br /><br />Please keep us posted on how Tysabri works for you. I'd love to know. Good luck with it and do keep researching, keep digging for information.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-8866774166396466532010-11-18T12:56:20.220-05:002010-11-18T12:56:20.220-05:00Hey Lisa,
After reading this, I feel like I'...Hey Lisa, <br /><br />After reading this, I feel like I've got a few things wrong, or rather the info I've found and have received from my doctor has been slightly skewed. I was under the assumption that the vast majority of PML cases came out of Europe, however what you've posted here shows the US and Europe almost neck and neck for cases. <br /><br />You brought up a huge question in my mind, in regards to the well being of the patients who have developed PML but haven't died from it. Where are these people? What is happening to them? What is their quality of life like, and have any of the supposed treatments to try and stall the advent of PML worked? I feel a little jipped in terms of this info. <br /><br />Coming off of Avonex, my doctor has advised Tysabri and it's just a waiting game right now with insurance approval and/or patient assistance. I made an appeal for Copaxone and that was shot down, so at this rate, it's looking like Tysabri. <br /><br />Thanks for posting this, it's pushed me to keep further researching the issue...<br /><br />DanaUnknownhttps://www.blogger.com/profile/07835102711494775543noreply@blogger.com