new PML case

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

Postby HarryZ » Tue Nov 18, 2008 7:29 am

CureOrBust wrote:
ursula wrote:There simply is nothing positive to be said about the Tysabri/Avonex trial.
Yes there is, we all now know not to mix the two, and it gave everyone a heads up that suppressing the immune system while on Tysabri, was not a good thing. Its a major pity the way we found out.


Perhaps this kind of reasoning may be understandable if the combination trial had taken place AFTER Tysabri was approved. But to combine it with Avonex in the beginning was nothing short of a hopeful $$$ grab by Biogen. Every researcher involved with Tysabri knew of its possible dangers in how it altered the way the immune system operated. And to combine it with another drug like Avonex....hmmm, you start to wonder about Biogen's priorities!

Harry
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Postby msladyinca » Wed Nov 19, 2008 4:20 pm

Ursula,

So who are you?
The official spokesman of Biogen Idec in every MS forum?


For your information, I am a MS patient that has had MS for 32 plus years. I am 100% disabled and can no longer work. I am not an official spokesperson for any pharmaceutical company. I've been studying Tysabri/Antegren since the year 2000.

I find your remarks towards me rather rude and I did not deserve them.

I have been a member of ThisIsMS since 2006, and I note you have only recently joined this forum two months ago. Try to afford me the same amount of respect that I afford you.

Lauren

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Civility please

Postby lyndacarol » Wed Nov 19, 2008 5:05 pm

In my opinion, civility is the first requirement of this website. The length of membership here does not grant any special privileges. We all have a connection to MS and seek answers and emotional support. Let's give common respect to each other, even tho we come with different ideas and suspicions?
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Postby HarryZ » Wed Nov 19, 2008 9:36 pm

[color=blue][size=14] It is easy to make claims such as that, but difficult to prove any authenticity to such claims. Please provide a link for these "recent studies" you claim to have knowledge of. I have not seen any data from any recent studies claiming this "longer-term use being detrimental to the patients' immune system".


Lauren,

I was able to find the second study that you claimed I was making up.

Tysabri is causing an increase in B immune cells and in the long run, that is not good. Like I have said many times, there is a lot unknown about this drug and I fear that its long term use may cause some real problems.

BTW, I should be asking you for the same level of respect that you have demanded from Ursula. Stating that my statements are wrong when in fact they were not and inferring that I am making up information about clinical trials isn't exactly what I would call respectful comments. I have no problem with people disagreeing with my opinions. But I'm not too keen to have people infer that I am not being truthful.

Harry

Natalizumab disproportionately increases circulating pre-B and B cells in multiple sclerosis.
Krumbholz M, Meinl I, Kümpfel T, Hohlfeld R, Meinl E.

Institute of Clinical Neuroimmunology, Ludwig Maximilians University, Munich, Germany.

BACKGROUND: Natalizumab, a humanized anti-alpha4 integrin monoclonal antibody, reduces relapses and disease progression in patients with multiple sclerosis (MS). Whereas its presumed mode of action is inhibition of T cell/monocyte entry into the brain, little is known about its specific effect on B cells, which are increasingly recognized to participate in MS pathogenesis. METHODS: We obtained serial blood samples from 17 patients before and during natalizumab therapy for relapsing-remitting MS for up to 16 months, and blood samples from 10 untreated patients with MS and 13 healthy donors. We determined numbers of mature and immature lymphocyte subsets by flow cytometry for CD3, CD4, CD8, CD19, CD138, and CD10 in 111 samples. We analyzed marker transcripts for immature hematopoietic cells by quantitative PCR for CD34, Vprebeta1 (pre-B lymphocyte gene 1), and DNTT (terminal deoxynucleotidyltransferase) in 65 samples. RESULTS: Natalizumab therapy increased CD19(+) mature B cells more than other lymphocytes/monocytes in blood (2.8-fold versus 1.3-1.8-fold increase in cells/microL; p < 0.01). Even greater was the increase of immature CD19(+)CD10(+) pre-B cells (7.4-fold; p < 0.01). This pattern remained stable during treatment for up to 16 months. Transcripts of lymphocyte precursors (Vprebeta1 and DNTT) were elevated more than transcripts for CD34. CONCLUSIONS: Circulating B cells and especially pre-B cells are most prominently elevated among the studied immune cell subsets, raising the possibility that the effects and side effects of natalizumab are partly mediated by actions on B cells.
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Postby ursula » Thu Nov 20, 2008 1:03 am

Lauren,

I´m sorry to say that but I find your posts on Tysabri rather uncritical and onesided.
By the way, I´ve known your posts (with always the same message) in almost every MS-Forum for years now.

Fortunately, everybody here is allowed to say what one thinks.
Are you really surprised to get some opposing wind to your flood of Tysabri posts?
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Postby itsjustme » Thu Nov 20, 2008 5:43 am

Harry,

I still don't see where you admit you were wrong when you misstated the following...

...You explained yourself, but you still do not apologize for your misstatements...

...You then state...

... however you should know the following...

... THAT is why Harry. (Sigh)
Lauren



Is it just me, or is it that this really does sound like a mom correcting her 12-year-old child - over and over again?
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Postby msladyinca » Thu Nov 20, 2008 4:13 pm

To lyndacarol:

The length of membership here does not grant any special privileges.


I never said it did... I was only commenting on the length of membership on this MS forum between Ursula and me, and I did not appreciate being labeled/implying that I am "Biogen/Élan spokesperson" by Ursula.

Civility is a 2 way street. Treat me with respect, and I in turn will treat others with respect as well, even if I disagree with their position.

To Harry:


the same level of respect that you have demanded from Ursula. Stating that my statements are wrong when in fact they were not and inferring that I am making up information about clinical trials isn't exactly what I would call respectful comments.


I never "demanded" anything from Ursula... and I never inferred that "you" were making up information about the clinical trial..., what I said was: "It is easy to make claims such as that, but difficult to prove any authenticity to such claims. Please provide a link for these "recent studies" you claim to have knowledge of. I have not seen any data from any recent studies claiming this "longer-term use being detrimental to the patients' immune system". Furthermore, I was respectful when I asked nicely by saying please provide me with a link for these recent studies.

From reviewing the information you posted/provided, I see nothing which indicates that Tysabri's "longer-term use is detrimental to the patient's immune system", only that "...little is known about its [Tysabri] specific effect on B cells...for up to 16 months... Whereas its presumed mode of action is inhibition of T cell/monocyte entry into the brain, which are increasingly recognized to participate in MS pathogenesis. CONCLUSIONS: Circulating B cells and especially pre-B cells are most prominently elevated among the studied immune cell subsets, raising the possibility that the effects and side effects of natalizumab are partly mediated by actions on B cells".

In my opinion, 16 months is hardly considered "long-term", and the terms "subsets", "little is known/presumed mode of action", raising the "possibility" are hardly considered concrete evidence of Tysabri being detrimental to the patient's immune system.

And I will ignore Ursula's last comment as I consider this another "dig" towards me, and is undeserving of a response. I really wish others would not misquote me or put words in my mouth that I did not say.

Lauren
Feel free to visit my Blog and leave me a comment, I'd love to hear from you! :)

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

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Postby HarryZ » Thu Nov 20, 2008 4:38 pm

[color=blue][size=14]I never "demanded" anything from Ursula... and I never inferred that "you" were making up information about the clinical trial..., what I said was: "It is easy to make claims such as that, but difficult to prove any authenticity to such claims. Please provide a link for these "recent studies" you claim to have knowledge of. I have not seen any data from any recent studies claiming this "longer-term use being detrimental to the patients' immune system". Furthermore, I was respectful when I asked nicely by saying please provide me with a link for these recent studies.


Lauren,

If you can't see the inference in your message, then there is no point in bringing it to your attention anymore.

From reviewing the information you posted/provided, I see nothing which indicates that Tysabri's "longer-term use is detrimental to the patient's immune system", only that "...little is known about its [Tysabri] specific effect on B cells...for up to 16 months... Whereas its presumed mode of action is inhibition of T cell/monocyte entry into the brain, which are increasingly recognized to participate in MS pathogenesis. CONCLUSIONS: Circulating B cells and especially pre-B cells are most prominently elevated among the studied immune cell subsets, raising the possibility that the effects and side effects of natalizumab are partly mediated by actions on B cells".


When it comes to Tysabri, Lauren, you seem to hide your head in the sand when anyone questions its safety and/or possible dangers. You can continue to react this way and that again is your prerogative. I get the feeling though that some people here take what you say with a grain of salt.

In my opinion, 16 months is hardly considered "long-term", and the terms "subsets", "little is known/presumed mode of action", raising the "possibility" are hardly considered concrete evidence of Tysabri being detrimental to the patient's immune system.


Hardly considered long term?......well, since the drug has only been used by the general public for not much longer than that, I guess coming up with more data than what these researchers found would be kind of difficult, don't you think??!! And if elevated B cells after this time isn't a cause for concern compared to the other participants in the study...well again, one can hide their head in the sand.

And I will ignore Ursula's last comment as I consider this another "dig" towards me, and is undeserving of a response. I really wish others would not misquote me or put words in my mouth that I did not say.


My goodness, look who's calling the kettle, black!!!

Harry
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My opinion on civility

Postby lyndacarol » Thu Nov 20, 2008 5:08 pm

Lauren--I do not agree with your description of civility:
Civility is a 2 way street. Treat me with respect, and I in turn will treat others with respect as well,

We all want to be treated with respect, but cannot control the behavior of others--only our own behavior! I do hope you will allow me to have my own opinion.

By the way, the civility quote is yours exactly--you have not been misquoted.
I really wish others would not misquote me or put words in my mouth that I did not say.
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Re: new PML case

Postby NHE » Thu Nov 20, 2008 5:36 pm

As Arron wrote in the Rules of the Board thread, let's please keep the discussion focused on debating the known facts about Tysabri and stay away from personal attacks.

Thanks, NHE

Arron wrote:Just a friendly reminder: We love the debating that's been going on lately because it forces people to think critically and challenge their own beliefs.

However, there can be too much of a good thing. If you disagree with someone, please succintly state why and let it go at that. Point, counterpoint, counter-counter point, etc. is not useful-- the reality is that after the first disagreement, you will rarely convince another of something they feel strongly about unless you have shocking new information to share. The drawn-out debates also turn people off from reading the messages in the first place. If you really have to get something off your chest, please send that person a Private Message-- there is no need to have a long argument in public.

For the most part, everything on the board so far is just fine, but I want to keep it that way. We are all in this fight together; Let's focus all of our energies on trying to beat MS into submission, not each other. :)

If you disagree with what I said (how ironic!), please drop me a private message. However, I have received enough comments from members that are in support of the above to feel confident about what I just posted.
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Postby Lyon » Tue Nov 25, 2008 7:30 pm

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Last edited by Lyon on Sun Nov 27, 2011 11:04 am, edited 1 time in total.
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Postby cheerleader » Tue Nov 25, 2008 8:36 pm

Lauren-
I can see from your public video on you tube you have had a tough time of it. I'm sorry for your struggles.
http://www.youtube.com/watch?v=M0C-CK1PWcI

Let's remember that MS is our common enemy. We many have different approaches, but we all want the same thing. A cure. I wish everyone health and stability...and pass me the french fries, Bob!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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