Appointment for First Infusion?
Posted: Tue Jul 11, 2006 1:14 pm
Has anyone set up their appointment for the first Tysabri infusion yet?
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I disagree. It MAY HAVE SHOULD HAVE BEEN, but we know there was a lot of that going on in the trials. There were NOTED people in MISS that had severe MS and it did improve them. It still is no miracle, but if it does 1 iota of help for Gary, then it is worth every penny we will spend, happily.Tysabri has not been tested on severely affected patients but like your husband, these are the people who are willing to take the risk and try the drug to prevent further deterioration of their condition.
To my knowledge and what I have read about anything that Biogen has published, all of the patients in the monotherapy trial were mild cases of MS.I disagree. It MAY HAVE SHOULD HAVE BEEN, but we know there was a lot of that going on in the trials. There were NOTED people in MISS that had severe MS and it did improve them. It still is no miracle, but if it does 1 iota of help for Gary, then it is worth every penny we will spend, happily.
There were many notations of improvement of sight, walking, spasticity, etc. I am listening to the people speak and NOT the research alone.
Exactly as I stated, I don't listen to JUST research. This was case was not in the trial time and was told by a DR that had nothing to gain one way or the other. I still don't know why you read so much in Tysabri, as your wife if not going to be taking it, as stated by you.I haven't seen any reports describing the results.
OK...I thought that perhaps I had missed some article or press release about Tysabri's results on more severe cases of MS.Exactly as I stated, I don't listen to JUST research. This was case was not in the trial time and was told by a DR that had nothing to gain one way or the other. I still don't know why you read so much in Tysabri, as your wife if not going to be taking it, as stated by you.
It's unfortunate you feel that way and you are entitled to your opinion. At the same time I continue to get private e-mails from readers who appreciate the fact that I continue give another point of view on Tysabri.As much as I like you, I am developing a new MS symptom - I'm sick to the stomach of HarryZ constantly posting the same stuff on Tysabri. You must have posted the same anti-Biogen / anti-Tysabri posts a thousand times.
I have NEVER told a MS patient that he/she should not use Tysabri or any other MS approved drug. I have ALWAYS supported the fact that a patient has the right to choose what therapy they feel comfortable with as long as the patient has been properly informed about the medication and discussed the options with their doctor.Let the people who have MS talk to their neuro and decide if this drug is for them or not. YOU will never need to go on it. YOU should be enjoying all the things that many with this disease have been robbed of - going for a long walk, a round of golf.
I think that I have been "more than interested" in MS for over 40 years, Ian! I have seen how many of these therapies evolve, how they have been introduced and how disappointing they have been after being promoted to the hilt to the world of MS medicine. Unfortunately, the only people that have benefited the most have been the bank accounts of the companies that have introduced them!YOU say that you have been interested in MS for 40 years - it's time for a break. Let me pick another disease and you can find another drugs company / drug to focus on. I don't know how much Serono are paying you but it isn't enough. Let Amelia and her husband (and the others on this site) make their own decision in consultation with a medical professional. They don't need you telling them about a rumour you heard while standing at the urinal next to a Chinese sailor.
I believe "hate" is far too strong a word to use here...but after learning about Biogen, how they operate and how they handled Tysabri's introduction, I certainly don't have much, if any, respect for them.YOU HATE BIOGEN YOU HATE TYSABRI WE KNOW THAT - IT CAN GO AS A STICKY. But I can't stand any more - I'm not a well man.
I trust then that you are encouraging "selective posting" on this site and anything you don't like to read should not be posted. Like I said earlier in this message, there are others who support what I write and of course others who don't agree with what I may say. You don't have to go back too far on this forum to read about others who have been told to stop writing about a therapy they are using and believe in simply because someone doesn't like what they have to say. I may not agree with what they are saying either but I don't ask them to stop expressing their opinion. So with that in mind, Ian, I am still going to post about Tysabri or any other topic that I wish to and I will continue to do so in a polite manner. If my postings on Tysabri upset you that much then I can only suggest that any time you see my name on an article, please do not read it.Please I beg you - don't post anymore on Tysabri on this site. I don't use any other sites - so please post on them if you really have to.
Gee Ian...if the people on BrainTalk read your comment I'm sure that they would be throwing more than tomatoes at you. There are some very knowledgeable people over there and they write some excellent messages. As well, some people there agree with what I say and others disagree a lot....same as on ThisIsMs. But I don't think it's very fair to call that an "inferior site"!!That inferior MS website - BrainTalk - is where you belong. They like you there. I like you but not when you keep banging on about Tysabri.