tag:blogger.com,1999:blog-3500936220214961312.post3226715044937932317..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Tysabri in the NewsLisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-3500936220214961312.post-903105668193454382009-11-14T07:52:27.215-05:002009-11-14T07:52:27.215-05:00When I went on Tysabri I knew about the risks, but...When I went on Tysabri I knew about the risks, but it was not known what would happen (if anything) the longer you were on it. I have been on it for almost 3 years and am a little concerned about this new data. I'm not afraid of dying, I'm afraid of living with horrible disability if I should be one of the unlucky ones. Because I do Tysabri every 3 weeks, I am one of the elite that is over the 36 infusions mark. (Before I get crucified for doing Tysabri every 3 weeks, I have to say that it is okay to do it. I did my research about it.)Blindbeardhttps://www.blogger.com/profile/13653985941985467240noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-85200571422398822452009-11-11T09:59:59.871-05:002009-11-11T09:59:59.871-05:00David,
How much criticism do you read here of Bio...David,<br /><br />How much criticism do you read here of Biogen specifically? Pointing the risks of other biological drugs is an ineffective method of neutralizing the risk/benefit profile of Tysabri.<br /><br />Also, I have serious doubts to believe that David Phillips, writer for BNET, has been trolling the blogosphere just to leave canned comments such as this excerpt from one of his articles.<br /><br />An ineffective reputation management tactic on behalf of Biogen. If anything, it serves to fuel the fire of manipulated motives of persons spreading specific messages.<br /><br />Just my opinion.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-27682740198721712652009-11-11T06:03:08.981-05:002009-11-11T06:03:08.981-05:00Before criticizing Biogen, the American public nee...Before criticizing Biogen, the American public needs to remember that all current and emerging biological therapies for immune-mediated diseases, such as rheumatoid arthritis, Crohn’s disease, and MS, are imperfectly understood at best. The actual mechanism by which most of these drugs work is often murky, and they can cause unknown side effects as well:<br /><br />Increasing numbers of invasive fungal infections are being reported in patients who have autoimmune inflammatory diseases and are being treated with newer immunosuppressive drugs, such as the well-known tumor necrosis factor (TNF)-alpha antagonist Enbrel (Etanercept), the anti-CD52 antibody Campath (alemtuzumab), or the interleukin-2 receptor antibody Simulect (basiliximab). [Current Infectious Disease Reports, 2009 Nov; 11(6): 435-8]<br /><br />Or, as Ralf Gold, a well-respected neurologist in residence at Ruhr-University, located in Bochum, Germany, pointed out in a paper published in the New England Journal of Medicine: “new MS drugs unfortunately have new side effects that can sometimes be fatal.<br /><br />That said, Biogen seems to have gone out of its way to downplay link between duration of use & increased risk of developing PML: $$$?<br /><br />see: http://industry.bnet.com/pharma/10005050/moretysabri-problemstime-for-biogen-idec-credibility-check/David J. Phillipshttps://www.blogger.com/profile/01447096336527192686noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-51319974775880874532009-11-02T18:50:05.649-05:002009-11-02T18:50:05.649-05:00PS Just noticed this comment from Oct 17 over on T...PS Just noticed this comment from Oct 17 over on Trevis's blog on the 'Tysabri progress check' page from a relative of a patient who is being treated for PML and that actually mentions specifics of what the effects have been so far?<br /><br /> (www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/tysabri-a-progress-check/?comment_id=21994#comment-21994 )<br /><br />- as compared to the pharma mentions of pml that only list things in terms of being alive or not.Che koalahttps://www.blogger.com/profile/09224701833663123033noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-29242363551288582982009-11-02T18:40:27.755-05:002009-11-02T18:40:27.755-05:00Thanks Lisa - can't help but think there seems...Thanks Lisa - can't help but think there seems to be something of a disjunct between the drug company's rhetoric about the TOUCH program/close monitoring (have you send the forms Tysabri patients have to sign off on before every infusion??) - but then in the other direction, reducing the information it considers in the public interest or even to patients about that close monitoring. <br /><br />Realise some of it veers off to become about the company's money making/shares et al, rather than about informing patients and public interest but still...<br /><br />(Here's to big but(t)s and plenty of them, hey Diane)<br /><br />cheersChe koalahttps://www.blogger.com/profile/09224701833663123033noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-57324102751232074252009-11-01T11:11:00.461-05:002009-11-01T11:11:00.461-05:00Hi Lisa,
Came by to say hello and wish you a good ...Hi Lisa,<br />Came by to say hello and wish you a good Halloween weekend.<br />Love,<br />HerradHerradhttps://www.blogger.com/profile/13728207969811635579noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-40085673046866003652009-10-31T22:19:11.878-04:002009-10-31T22:19:11.878-04:00I so love your 'butts' Diane. ;)
It is c...I so love your 'butts' Diane. ;)<br /><br />It is certainly frustrating to know where to place any credit (if credit really is due at all) when someone does well, or blame if someone is not doing well. I was having a conversation recently with someone who was trying to better understand why MS patients were so fervent in their opinions on this. <br /><br />I explained this is was almost a 'damned if you do, damned if you don't' type of situation. No matter what, the disease progresses. Fact. The path along the way has little rhyme nor reason.<br /><br />Personally, I can't stand some of the stories which are used by <i>some</i> MSers to further their agenda. Example maybe this - I was blind and in a wheelchair at the age of 20 because of MS, blah, blah blah, but now I can hike 3 miles, run a successful business, and would like to teach you how to break free of the barriers to financial freedom. Stuff like that burns my hide.<br /><br />I probably should have been dx in 2000, but for various reasons I was not (one of which was lack of brain lesions and we left it at that). I still don't have the impressive brain lesions which some patients do, but yet I still have symptoms which come from brain involvement.<br /><br />Where do I fit on the "Diane's observational" scale? Personally, I think the majority of my remitting occurred before I was dx. I haven't been back to baseline since, but I'm still having relapses.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-12667169309841809242009-10-31T21:46:13.786-04:002009-10-31T21:46:13.786-04:00Lisa, I like these talks too. But here(see a butt ...Lisa, I like these talks too. But here(see a butt coming? LOL) is the thing, I TOO was "progressing" rapidly 6 months post DX AND recovering from a hysterectomy---but I relapsed eventually, coming back from being legally blind, unable to drive, I took a HIT HIt HIT, but I relapsed! That's why they call it RRMS! So many bloggers say they are progessing like it is going to be all down hill and then they take a drug, or 2, until they relapse and EUREKA! The drug gets the credit! I never went blind again. I never had foot drop again. Had I taken a drug---it would have gotten all the credit. I can't wait to see how this all shakes out. NO drug stops MS. I have now read about several scientists/researchers/doctors who get MS and they become very interested in finding the right treatment. (I would too!) But, I just wonder is semantics are an issue nowadays. I rarely read anyone say, "I have MS, I'm blind, but I have RRMS so things will get better, since I haven't even had my DX for 5 years yet." Instead I read, "I have a very aggressive kind of MS." (First thing I do is look for their date of DX. Then I wait and a year later they are singing a different song.) There is NO FDA approved drug for aggressive,progressive MS---because no drug is proven effective. That is the bad news, the GOOD news is progressive MS is RARE. AND you can go into a 5 year relapse and then have an onslaught of symptoms, all of which may resolve, SPMS is the step after RRMS and that is a big step. (meaning many years inbetween)Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-35765008599832642462009-10-31T15:59:35.244-04:002009-10-31T15:59:35.244-04:00BTW, folks. I'm really enjoying this conversa...BTW, folks. I'm really enjoying this conversation!! Thanks so much for chiming in.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-84221891982124029552009-10-31T15:59:20.250-04:002009-10-31T15:59:20.250-04:00Judy, sounds like you are treating your MS (and li...Judy, sounds like you are treating your MS (and life in general) from many different fronts....all positive. Good for you.<br /><br />Diane, I agree with you. Very interesting that I met an MSer at my physical therapist's office earlier in the year (maybe March?) who is also an MS researcher. He is a scientist, doing the type of research involving mice and myelin, who later developed MS himself.<br /><br />This particular MS patient happens to be one of those MSers who I ran across at the infusion center getting his monthly Tysabri drip. He was progressing quickly in the six months post-diagnosis so our neurologist switched him to Tysabri.<br /><br />We had a really good conversation focusing on research and different treatment theories. Interestingly, he began to do better with Tysabri treatment and had been on it for 7 months at the time I ran into him in July.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-43195889392292561532009-10-31T11:31:29.740-04:002009-10-31T11:31:29.740-04:00Yes, MS outcomes are better! They used to give us ...Yes, MS outcomes are better! They used to give us 5yrs to live after DX. But that was diagnose, adios, years when we were told to go home to bed. Now "they" realize being as active as we can is best. DRUGS had nothing to do with that. Ms "Specialists" aarrgh and sigh, what does that degree look like? I have spoken to some of them and they are sorely under-educated in MS. Talk to a scientist doing MS research, they will give it to you straight (if no drug maker pays them) and you may not like what you hear. (Which is why you don't hear from such people.) Know this: MS is NOT a death sentence, it IS manageable, you CAN find a normal life with MS, just don't expect it to be normal as you once knew it (UNLESS that is the type of MS you have--then, count yourself lucky.)Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-33536030975914970932009-10-31T08:05:24.192-04:002009-10-31T08:05:24.192-04:00Lisa, you asked me what I do. After redoing my MR...Lisa, you asked me what I do. After redoing my MRI and discussions with my doctor, an MS specialist, we have mutually decided to just have me continue taking 4-aminopyridine and to continue with the mix of complementary therapies I do. These include a number of supplements, a nutritional juice, and pharmaceutical-grade essential oils. I also meditate, do creative visualization, and see a psychologist. I think the mental health component of this is just as important as any disease-modulating therapies. I eat organic food when I can and avoid processed foods. I’ve tested for food allergies and eat accordingly. I exercise daily. I tailor my daily activities to avoid having my fatigue reach a tipping point. I have reduced my chemical load by living near the ocean, stripping my house of carpets, and using nontoxic personal and household cleaning products. My MRI shows no inflammation. I have not had a relapse in five years, and that came on the heels of crushing stress resulting from three family deaths, husband’s cancer, and three hurricanes in a period of a year and a half. Indeed many of my current neurological deficits stem from that relapse. More than anything, I believe in the amazing capability of one’s body to heal if given the right circumstances. I endeavor to provide those circumstances.<br />JudyJudyhttps://www.blogger.com/profile/07141627284221873201noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-41230136698297429392009-10-31T00:15:27.845-04:002009-10-31T00:15:27.845-04:00Courtney,
That is so awesome to hear. Very glad ...Courtney,<br /><br />That is so awesome to hear. Very glad that you are doing so well. And thanks for mentioning the IGG test. It would be wonderful to get a better, or more specific, idea of who is a good candidate and who is not.<br /><br />It is from reading knowledgeable bloggers and forum participants where I learned that previous (and/or concurrent) use of strong immunosuppressants was associated with the patients who developed PML.<br /><br />This is why I know that I'm not a good candidate. I believe that the American woman who died late last year was also an RA/MS patient who had used methotrexate.....just like me.<br /><br />I also like having access to this type of information. I hope that we learn more about these more recent cases.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-7264584294848933792009-10-31T00:10:00.667-04:002009-10-31T00:10:00.667-04:00Judy,
It's such a personal choice and we each...Judy,<br /><br />It's such a personal choice and we each have to place faith in our own thoughts and opinions as well as those of our doctors. My neurologist doesn't recommend Tysabri for everybody but I asked him last September if he had considered taking anybody off. His answer: NO.<br /><br />What do you do now, Judy?Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-16705134662779569042009-10-31T00:06:40.348-04:002009-10-31T00:06:40.348-04:00Diane, it's tough when most of the data which ...Diane, it's tough when most of the data which is published was really gathered with the intent on getting the drugs FDA approved in the first place. It would be great to see long-term data comparing those who never used drugs and those who have.<br /><br />Actually, some of that data might be anecdotal, coming from the MS professionals. My neurologist and MS nurse have been in this business for several decades. In fact, my MS nurse just retired this summer after a long career in the field. :( I have to believe her when she says that the outcome for patients has changed dramatically over the decades.<br /><br />In fact, she had patients on Tysabri before it was pulled and even a few who participated in trials before that. She saw how much the patients really enjoyed the benefits. After the drug came back on the market in 2006, they didn't do those infusions in the office for quite awhile because of the uncertain risk. But now they have a group of patients who come in monthly. I met and spoke with a couple while I was getting my Solumedrol drips this summer (8 days total for me). Very positive experiences for them.<br /><br />I'd consider Tysabri, but I'm not a candidate due to an already suppressed immune system because of methotrexate.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-31980860008917302422009-10-30T23:03:43.684-04:002009-10-30T23:03:43.684-04:00I had my 30th Tysabri infusion last week and have ...I had my 30th Tysabri infusion last week and have not had a relapse or need for steriod treatment in more than two years. <br /><br />One characteristic among all who have developed PML is an IGG Subclass Deficiency. I don't know much about this but took the blood test Wednesday and will get the results on Tuesday next week. This should serve as another marker when assessing risk.CChttps://www.blogger.com/profile/04423381195130346890noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-47813395962320788042009-10-30T21:38:24.464-04:002009-10-30T21:38:24.464-04:00Every time I hear news like this I am reminded of ...Every time I hear news like this I am reminded of how I was discouraged from resuming Tysabri by the head of the neurology/MS department of a major university. He looked into my eyes and quietly said, "Please don't. They don't know enough about it."<br />JudyJudyhttps://www.blogger.com/profile/07141627284221873201noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-87812664433855685872009-10-30T21:24:58.292-04:002009-10-30T21:24:58.292-04:00I am not surprised. Any data on people 20 yrs on t...I am not surprised. Any data on people 20 yrs on the drug and their state of disability compared to using no drugs or, say, Copaxone? All drugs carry risks, one must weigh how much they need/want a promised outcome. And, of course data only includes those with RR MS. MS drugs must give the FDA a giant headache. I don't know how they do it. I used to follow MS drug data, but it became so absurd and mystical, I felt I was following a myth.Diane J Standifordhttps://www.blogger.com/profile/11862850657925658079noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-67631716003275621802009-10-30T19:35:45.913-04:002009-10-30T19:35:45.913-04:00Hi, yes it is a bit confusing. The additional cas...Hi, yes it is a bit confusing. The additional cases have been reported in Europe since the FDA website was last updated. Biogen stopped making public announcements in July and there is speculation as so why so many cases have been reported recently.<br /><br />One thought is that the delay was due to holiday periods in Europe. Another theory is that now that the EMEA has increased their survalance that more cases are being recognized and reported.<br /><br />I would have to go scrutinize any conference calls which Biogen/Elan have held during this time period to put a timeline on it. There's not a simple chart (unfortunately). Also the fact the as time goes on, there will be more and more patients reaching 24+ infusions. <br /><br />I wish that I knew more, but most of the recent stuff I read is linked from in the post at HealthCentral. I had not even been watching Tysabri much lately until earlier this week.<br /><br />Hope that helps, although it's still surprising.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-89562173160176284272009-10-30T18:42:05.730-04:002009-10-30T18:42:05.730-04:00Hi Lisa, thanks for this update. I am a bit confu...Hi Lisa, thanks for this update. I am a bit confused about the sudden jump in figures to 24, which I also saw mentioned on an MS Society website. On the FDA site it mentions 13 reported cases up to early September:<br /><br />"From July 2006, (when Tysabri marketing resumed) to September 8, 2009, 13 reported cases of Tysabri-related PML were confirmed worldwide in patients being treated for MS with Tysabri monotherapy. Of these, four cases were patients in the United States"<br />Information on Natalizumab (marketed as Tysabri)<br /><br />Updated Information: [9/2009]<br />http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm107198.htm<br /><br />- have another 11 cases occurred in the space of the last six weeks?<br /><br />any light you can shed muchly appreciated, taChe koalahttps://www.blogger.com/profile/09224701833663123033noreply@blogger.com