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| The down side of Tysabri https://thesymmetryforum.com/viewtopic.php?f=24&t=15 |
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| Author: | Michele [ Tue, 02 Oct 2012, 9:33 pm ] |
| Post subject: | The down side of Tysabri |
I hesitate to post on this subject, as some people do take this drug and if it is working for them then I for one do not want to pour cold water on their experience, but I also think it is important to have facts to hand and be aware of the dangers. I get regular updates about the numbers of people who have been unlucky enough to contract PML and those who have died from it. The latest message is as follows: Bad news: As of September 5, 2012, there have been 285 confirmed cases of PML worldwide (102 in the US). 62 of 285 (22%) of the patients with PML have died. Until today approximately 104,300 patients have received TYSABRI in the postmarketing setting worldwide. Alexander Otto http://chefarztfrau.de/?page_id=716&cpage=18#comments |
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| Author: | Zac [ Sun, 07 Oct 2012, 7:36 pm ] |
| Post subject: | Re: The down side of Tysabri |
Hi, I was reluctantly on Tysabri for 12 infusions until I was informed I am now JCV positive, I would rather face MS than both MS & PML even though my neuro would prefer me to continue with Tysabri, I felt it made me decline at a scary rate, coming off it gave me instant fatigue relief, and improved dexterity. Good luck to those who are benefitting from it.. |
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| Author: | Michele [ Mon, 08 Oct 2012, 6:17 pm ] |
| Post subject: | Re: The down side of Tysabri |
That is Interesting Zac, I rarely hear of people not doing well on this drug. But research does suggest it is not as effective as Biogen would have us believe so I was surprised that no one was actually sharing not doing well on it. I expect it is down to people not doing well not saying anything about the failure of the drug for them. So thank you for being the voice of the majority. |
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| Author: | Zac [ Mon, 08 Oct 2012, 11:26 pm ] |
| Post subject: | Re: The down side of Tysabri |
Hi Michele, Just telling it as it was ! I have kept a daily diary of my entire experience on Tysabri, from day one I felt uncomfortable which just escalated, even my neuro said out of the 90 patients he has taking it at the Queen Elizabeth hospital I was the only one to have adverse symptoms so not to blame the Tysabri and persevere, I did as he advised until I ended up with a virus I didn't have before starting it. EVIL! I am now going to look at an alternative approach to help combat my symptoms. |
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| Author: | Jencor69 [ Mon, 11 Feb 2013, 3:50 pm ] |
| Post subject: | Re: The down side of Tysabri |
Another tragic consequence of natalizumab (Tysabri) therapy reported here. MS Patient Dies From Anti-Drug Antibodies the unnamed MS patient was only 39 years old at time of death "Autopsy findings showed no evidence of infectious pathogens in the central nervous system. The conclusion was that acute MS inflammation was the cause of her symptoms and eventual death." Read the story yourself, see what you think killed her - http://www.medpagetoday.com/clinical-context/MultipleSclerosis/37290?utm_content&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2013-02-11&eun=g335839d0r&userid=335839&email=tania.broad%40btinternet.com&mu_id=5329754 |
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| Author: | Dr Amir (Dental Surgeon) [ Mon, 11 Feb 2013, 4:53 pm ] |
| Post subject: | Re: The down side of Tysabri |
It is ironic that on the death of a patient the coroner may record the actual cause of death perhaps as pneumonia, or liver failure. The drugs that the patient was prescribed is hardly ever recorded. Recording such statistics would seriously disrupt the ‘adverse event’ figures recorded by “scientific medical research”.: The statement: "The conclusion was that acute MS inflammation was the cause of her symptoms and eventual death." Where did this come from? MS is suddenly an entity now which can cause "inflammation"? With due respect and utter sympathy for the deceased and the family I find it a very inadequate explanation. The conclusion does not agree with the "findings"! |
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