Appointment for First Infusion?

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby bromley » Sat Jul 15, 2006 11:23 am

xxxx
Last edited by bromley on Sun Jul 16, 2006 6:29 am, edited 1 time in total.
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Postby HarryZ » Sat Jul 15, 2006 7:48 pm

Ian,

You can't say I didn't try. I just can't for the life of me understand why a grown man without MS would log on everyday to a range of MS websites. MS isn't a hobby and it's not an interesting subject. It's a vile disease and most of us with it log on to find out about reseach, drugs in the pipeline etc. I can't see what your motivation is.


Has it ever crossed your mind, that as the spouse of a SPMS person who has suffered from MS for over 35 years, I might be trying to learn some information on how to help my wife and as well, offer suggestions to people who are new to the disease?

It is being reintroduced and it would have been thoughtful to let the dust settle and let those with the disease decide whether to try it or not.


I have never interfered with anyone who has wanted to try Tysabri. If a MS patient wants to try the drug, nothing that I can ever say will prevent he/she from doing so.


Biogen and Elan are commercial companies and make money from drugs which they develop - they are not charities or Government. They make all sorts of drugs e.g. for cancer and if they prolong life or reduce pain the drugs are worth every penny.


Of course they are in business to make money and I have stated as much many times. There is nothing wrong with trying to make money. I simply don't like their ethics and how they do business when it comes to their MS medications.

It doesn't take a genius to look at your postings on the different drugs - hardly any for Copaxone, Avonex, Rebif, Betaferon or Novantrone. Yet you have posted hundreds about Tysabri. Why don't you post stuff under general discussion if you have an interest in MS generally?


I didn't realize that you were "keeping score" between Tysabri and the CRABs. I've commented on all those drugs (albeit not as often as Tysabri) on this forum and others. I've also commented on other MS issues, both here and on the other forums...ie: scooter choices, fatigue, family attitudes towards the MS patient, disabled parking permits, insurance issues, acupuncture, exercise therapy, spousal relationship ...I could go on for a long time.

I think you have to ask yourself what motivates you to come on these sites. I curse the day I was dx with this disease and the hundred of hours spent on this site - when I think of all the hobbies I can no longer do such as running and scuba diving. You have a choice. What fun / entertainment can you get - none of us with MS want to be here.


I've already partially answered this above. As well, I spend a large part of my day at home (home business) and mostly because I provide around the clock care for my wife as well as running the household. I don't live what one would call a normal life for a person my age because of the home care provider situation. So I have had to adjust and visiting the MS forums to learn information and assist others is part of this adjustment. I trust this answers the question that you have asked me many, many times!

always quote the Cochrane report that said Copaxone was next to useless). Fortunately you'll never have to use these drugs but you sow seeds of doubt in the minds of those who do.


I didn't write that report Ian.... MS research experts did and I think it's only fair that people be told about it. If you have a beef about it, then I suggest that you direct it against Dr. Munari who was the author. If you only read what Teva has to say about Copaxone then you are only getting one side of the story. A potential Copaxone user should have the opportunity to hear both sides.

My cousin died of breast cancer but I would not contemplate going on a breast cancer website and posting that the drugs are useless and the drugs companies are only interested in money and not patients. I think this view is totally unfair if you actually know some of the dedicated researchers and scientists.


Your comparison is totally off base, Ian!!

Please don't pull out loads of quotes from this post and respond to them.


So it's OK for you to post your disagreement with me but I shouldn't have the opportunity to do the same?

If I didn't have MS I wouldn't go near these websites. I certainly wouldn't go on them for a hobby. If they ever come up with a cure I'll be glad to see these sites shut down for good. If I was in your shoes, I'd get myself a more interesting hobby.


And if my wife didn't have MS for the past 35+ years, you wouldn't see me here either. But you have MS and so does my wife so we are both here....and don't for one second believe that I look at this as a hobby...it is anything but!

While you don't agree with everything that I say and I the same with you, I think it's best that we spare the readers any more squabbling between us.

Take care.

Harry
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Postby bromley » Sun Jul 16, 2006 4:14 am

Harry,

I'm taking a three-month break from the site - it's starting to become an obsession and that's not healthy. In October I should be getting the dosing of the drug on the trial I am hopefully joining. Tysabri should be available in Europe soon and I hope all who use it see good benefit and that it is safe.

Two MS conferences take place in the autumn - ECTRIMS in September and ACTRIMS in October. Hopefully some useful research and some positive drugs trials results will be presented. I'll be back in the autumn to post on these.

Have a good summer everyone.

Ian
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Postby Mary » Sun Jul 16, 2006 5:46 am

Perhaps a new thread called Pissing Matches is in order? Geez, take it offline, go to personal messages...I wanted to read about Tysabri but instead spent ten minutes trying to get through the Harry and Ian show to see if there was anything new or interesting about Tysabri...
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Postby HarryZ » Sun Jul 16, 2006 6:19 am

Mary,

Mary wrote:Perhaps a new thread called Pissing Matches is in order? Geez, take it offline, go to personal messages...I wanted to read about Tysabri but instead spent ten minutes trying to get through the Harry and Ian show to see if there was anything new or interesting about Tysabri...


You are absolutely right and I offer my apologies for subjecting the readers to yet another spat between Ian and myself. The last time this happened we indeed did take it offline and settled the problem. Should have done the same this time as well.

Harry
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Postby Mary » Sun Jul 16, 2006 6:32 am

Thanks Harry, but no worries, and no apologies needed. :o) It's a personal and emotional disease, so naturally conversation follows suit...
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Postby large » Wed Jul 19, 2006 7:28 pm

Hello, first post here again, cannot remember my previous login and am not new to MS. I just had my MRI eval and neuro will be certified within the next couple of weeks and I plan to have my first infusion in September.

Odd discussion here, a few scare off links as if nobody here can read and what is with you and Tysabri Harry, some people in the trial had mild and some more severe rrms, just like the CRABS trials:

TYSABRI® was evaluated in two randomized, double-blind, placebo-controlled trials in patients with multiple sclerosis. Both studies enrolled patients who experienced at least one clinical relapse during the prior year and had a Kurtzke Expanded Disability Status Scale (EDSS) score between 0 and 5.0.

Good luck to everyone whatever their choice. I am tired of the crabs and being a pincushion for no apparent benefit, time for a change. A quick look at what one can potentially contract with the CRABS and which few do Tysabri mono looks pretty good to me.
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Postby HarryZ » Wed Jul 19, 2006 8:52 pm

Large,

Odd discussion here, a few scare off links as if nobody here can read and what is with you and Tysabri Harry, some people in the trial had mild and some more severe rrms, just like the CRABS trials:


When you have an EDSS scale at 5.0 or lower, then you are not considered as having severe MS. When discussion centers around a more severe level of the disease, it is usually associated with those who have SPMS and are progressing fairly quickly. That kind of patient has not been tested with Tysabri and the drug is not recommended for that kind of situation. That doesn't mean that SPMS patients who have not had a good response to other medications won't use Tysabri...they likely will try it but there is no evidence or data that shows Tysabri is effective for that kind of scenario.

Originally Tysabri was going to be prescribed for initial, mild forms of the disease. Now it will be recommended for those who have not had much if any success with the CRABs. No other MS drug will have the kind of patient monitoring Tysabri will because of the potential PML problem.

Remember when the CRABs first started being used....the companies who made them and many MS docs predicted all kinds of wonderful benefits. Unfortunately it didn't turn out that way. I sure hope that Tysabri has a better success rate because MS patients everywhere don't need another false hope thrown at them. And there is an awful lot about Tysabri that we simply don't know about at this time.

Harry
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Postby amelia » Thu Jul 20, 2006 7:29 am

Kurtzke Expanded Disability Status Scale (EDSS) score between 0 and 5.0.

You know, Gary is about a 6.5 on the scale and his disability is pretty darn bad. If it was a 4, it would still interfere GREATLY in his everyday life. If he was ONLY blind, it would be severe. If he ONLY had walking difficulties, if he ONLY had to be catherized daily, etc. I think you get the point. And I believe the above would put him in the 5.0 bracket or lower. I guess it just depends on where you put the word severe!
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Postby HarryZ » Thu Jul 20, 2006 9:17 am

Amelia,

You know, Gary is about a 6.5 on the scale and his disability is pretty darn bad. If it was a 4, it would still interfere GREATLY in his everyday life. If he was ONLY blind, it would be severe. If he ONLY had walking difficulties, if he ONLY had to be catherized daily, etc. I think you get the point. And I believe the above would put him in the 5.0 bracket or lower. I guess it just depends on where you put the word severe!


How very, very true!

The Kurtzke Scale, although it measures 8 different functional systems, seems to really put a lot of emphasis on ambulatory ability. Not until you reach 8.0 are you unable to walk at all on this scale. But the other MS symptoms that make your daily life absolutely miserable are very much a part of your existence at this point.

My wife, according to the scale, is about 8.0. Since breaking her leg 5 years ago, she has lost any ability to walk or even stand on her own. She has an array of other symptoms which are more or less kept under control or reduced by her use of Prokarin.

Generally,( I use this term with a lot of latitude) MS patients below 5.0 on the scale, can still walk on their own and although they suffer from other symptoms, they are not severe in nature. Of course there are many exceptions and Gary sounds like he suffers a lot from these other symptoms.

So when they use patients at 5.0 or less in the trials, these patients have not reached a level where they would normally not be included. Once they go beyond 5 and/or have many other symptoms (severe in nature) they are usually excluded because this kind of patient isn't likely to show much if any response to the medication being trialled.

Harry
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Postby amelia » Thu Jul 20, 2006 10:21 am

Sorry Harry, out of my lack of knowledge I did not know there were more than 1 EDSS scale
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Returing to the topic...

Postby Chicano » Thu Jul 20, 2006 10:53 am

Friends,

I met with my doctor on Tuesday here in San Francisco, CA. The MS docs and the infusion center are getting trained and certified within the next couple of weeks. So, my doc infusions will commence in mid August. I suspect it will be the end of August. Anyway, that's what they're telling us her in SF. I am pleased that they are moving forward and gettig ready.
Best,

Chicano
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Re: Returing to the topic...

Postby HarryZ » Thu Jul 20, 2006 5:43 pm

Chicano,

When you start with the infusions can you please let us know what kind of costs the infusion centre ends up charging you (the insurance company) for each infusion. Many thanks.

Harry
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Postby HarryZ » Thu Jul 20, 2006 5:45 pm

Amelia,

amelia wrote:Sorry Harry, out of my lack of knowledge I did not know there were more than 1 EDSS scale


Go to this link...it has a good explanation of the EDSS scale.

http://www.mult-sclerosis.org/expandedd ... scale.html

Harry
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Postby amelia » Fri Jul 21, 2006 7:57 am

Thanks Harry. I looked at it and realize that Gary is really between a 5.5 and a 6. Closer to the 6
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