Cladrabine - Movectro

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Re: BG-12

Postby jgkarob » Tue Jun 07, 2011 5:28 am

I know, thanks and normally I would, but I took a risk of being the next reply, after Ian's post and it didn't work out that way.
It's okay, the quote system, if you aren't quoting from a massive reply, then it fills the screen and thanks to MS, you've forgotten what you should be discussing. It's difficult to be pithy and angry with people when there's a huge block of text to refer to - which is why I post rarely here and also the scary, evangelistic nature of many posters - especially those without MS. They don't suffer the joys of instant wobbly legs and shaky hands and I do wish they knew about this.
abrazos,
jg


NHE wrote:
jgkarob wrote:Er, I wasn't addressing that post. That's the problem with this forum, you can't reply to a particular response.


You can always quote the text of the post you're replying to. Just click the quote button.


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Postby Lyon » Tue Jun 07, 2011 6:34 am

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Postby HappyPoet » Wed Jun 08, 2011 7:24 pm

bromley wrote:This thread is about oral DMDs - not about CCSVI. No need for HarryZ to post the usual negative comment - post it somewhere else Harry (please don't respond to this post).

For those interested in CCSVI - no need to post.
For Harold Zanin - no need to post.

NHE,

Your post is not interesting. What the hell has Chinese leather sofas got to do with oral DMTs for MS!! If you get some sort of kick from licking sofas you should reallly keep it quiet.

Any more whacky posts like this and I'll be having a word with JimmyLegs about removing your moderator badge. Maybe you should reduce you daily Sativex intake?

In future - keep to the topic. You're skating on thin ice.

This bromley character's behavior is quite disturbing, and I hope he feels better soon; nevertheless, TIMS should not tolerate his shocking (and sad) behavior.

NHE, thank you for your very interesting and relevant posts. Having as much information as possible about the chemicals used in DMDs and about the ethics of pharmaceutical executives is important for patients, except, of course, for those patients who blindly trust the pharmaceutical industry:

Just last month, Merck Serono, Inc., makers of Movectro, which is the OP's DMD of interest, paid a whopping $44.3 MILLION fine for having paid doctors to push Rebif on patients. Talk about unethical! How many patients were duped into injecting Rebif? With such shockingly unethical behavior like this toward pwMS, who knows what chemicals they're really putting in Movectro.

jgkarob wrote:I don't care about Big Pharma. All I want is to slow down/stop the MS and I really hate it when people who don't have MS tell me that what I'm taking doesn't work. Oh yes it does.

I'm glad your DMD is working for you; however, for those pwMS not as fortunate as you, Harry offers a very calm, highly intelligent, and well-reasoned voice. I'm sure you must feel some compassion for all those less fortunate than you, and I'm also sure you know that Harry never said your DMD doesn't work for you.

Harry, keep posting.
TIMS needs more posters like you.
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Postby Lyon » Wed Jun 08, 2011 8:24 pm

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Postby HappyPoet » Wed Jun 08, 2011 10:44 pm

Lyon wrote:Thank you for your valuable input happypoet.

You're welcome, Lyon.
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Postby jgkarob » Thu Jun 09, 2011 1:21 am

I didn't mention Harry Z and your attitude is exactly why I don't post on here much.
I was also talking from my personal experience, as one of those rare people who dare to post that my MS is under control, thanks to Rebif. If you look at my post about diet, you'll see that I'm talking only about my experience as MS is idiosyncratic.
Surely though, someone who isn't feeling dreadful and who has had a great result from Rebif, should be permitted to say so, without being criticised by those who haven't bothered to read previous posts.
I've been posting on these boards for over 5 years. They used to be a great place for those who suffer from MS, to discuss their treatments/theories. Now, anyone who comes out from behind the sofa, is jumped upon by people like you.
Ian and several other people have been told over and over by Harry Z that their drugs can't work and that the pharma industry is corrupt. However, we don't live in a country where medicine is run for profit.
Our experience is different. We have to take what we can get.
Back in 2000, people in the UK couldn't get access to DMDs at all, with rare exceptions.
Harry Z isn't correct. I will go back to not posting and keep well away from people who like to make extremely rude remarks and attacks about those who dare to try to swim against the current.
This board should NOT be a place where those who are on drug therapies are told to shut up.




HappyPoet wrote:
bromley wrote:This thread is about oral DMDs - not about CCSVI. No need for HarryZ to post the usual negative comment - post it somewhere else Harry (please don't respond to this post).

For those interested in CCSVI - no need to post.
For Harold Zanin - no need to post.

NHE,

Your post is not interesting. What the hell has Chinese leather sofas got to do with oral DMTs for MS!! If you get some sort of kick from licking sofas you should reallly keep it quiet.

Any more whacky posts like this and I'll be having a word with JimmyLegs about removing your moderator badge. Maybe you should reduce you daily Sativex intake?

In future - keep to the topic. You're skating on thin ice.

This bromley character's behavior is quite disturbing, and I hope he feels better soon; nevertheless, TIMS should not tolerate his shocking (and sad) behavior.

NHE, thank you for your very interesting and relevant posts. Having as much information as possible about the chemicals used in DMDs and about the ethics of pharmaceutical executives is important for patients, except, of course, for those patients who blindly trust the pharmaceutical industry:

Just last month, Merck Serono, Inc., makers of Movectro, which is the OP's DMD of interest, paid a whopping $44.3 MILLION fine for having paid doctors to push Rebif on patients. Talk about unethical! How many patients were duped into injecting Rebif? With such shockingly unethical behavior like this toward pwMS, who knows what chemicals they're really putting in Movectro.

jgkarob wrote:I don't care about Big Pharma. All I want is to slow down/stop the MS and I really hate it when people who don't have MS tell me that what I'm taking doesn't work. Oh yes it does.

I'm glad your DMD is working for you; however, for those pwMS not as fortunate as you, Harry offers a very calm, highly intelligent, and well-reasoned voice. I'm sure you must feel some compassion for all those less fortunate than you, and I'm also sure you know that Harry never said your DMD doesn't work for you.

Harry, keep posting.
TIMS needs more posters like you.
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Postby HappyPoet » Thu Jun 09, 2011 5:51 am

jgkarob, I did not say you mentioned Harry; I said he's a positive voice for those whose DMDs do not work. Also, I did not "attack" you in any way nor did I ever tell you to "shut up."

I acknowledged that your DMD is working for you by saying that I am glad for you, and I still am glad.
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Postby HarryZ » Thu Jun 09, 2011 6:45 am

Ian and several other people have been told over and over by Harry Z that their drugs can't work and that the pharma industry is corrupt.


Nice twist but perhaps you should go back and read what I've said for quite some time. I have not said that the DMDs can't work but that their efficacy is a far cry from being effective in the treatment of MS. And if you think the MS pharma industry is so wonderful, then you have been living on a different planet. Did you completely miss the story on Serono having to pay millions in fines for their actions in paying docs under the table to RX Rebif?

I have never minded people disagreeing with my opinions. It makes for interesting threads. But please don't try and put words into my mouth. Thanks.

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Postby Lyon » Thu Jun 09, 2011 6:50 am

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Postby HarryZ » Thu Jun 09, 2011 6:58 am

This thread is about oral DMDs[/b] - not about CCSVI. No need for HarryZ to post the usual negative comment - post it somewhere else Harry (please don't respond to this post).


Hey Ian,

I see that you are back to your old tricks when posting. Saying things off the top of your head because perhaps you are having a bad day and then eventually sending me an e-mail to say you really didn't mean it!!

If this thread isn't about CCSVI (and I agree) why did you find it necessary to make the comment that "CCSVI is not safe (couple of deaths) and not had the proper trials"?! Did you think that nobody would perhaps challenge that comment?

Disagree with other opinions all you want but I don't think the additional comments you sometimes make are necessary.

Take care.

Harry
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Postby Lyon » Thu Jun 09, 2011 7:14 am

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Postby jgkarob » Thu Jun 09, 2011 7:18 am

Okay. You show me once - just once where I have written the that pharma industry is wonderful since 2006, when I joined?
You write anti-drug comments often. I try to ignore them, because there's better things to do with life than read comments that aren't based on personal experience.
I don't want to clash with you Harry. You don't have MS and don't suffer the instant stress symptoms.
I know that in another thread you suggested to someone that they shouldn't be here if they can't stand up to vigourous discussion, but that's what MS does to those of us who actually have it.

In a country where medicine is not-for-profit, we have to take what's available.
There is no patient power and if by some incredible stroke of luck one of these drugs actually works better than the statistical norm, then people should know that occasionally good things happen.
I don't care about Serono, or Merck in the US. Why do you?
What happens in the US, is of little importance to the health care systems of the UK and Spain.
But if someone was to take my Rebif away, I'd be incapacitated within 2 years. LDN alone didn't stop relapses and I'll never try life without Rebif whilst I'm still lucky to be in RRMS - not until a better, safe drug comes along.

I value my quality of life very dearly. Very, very dearly indeed.
That's all I'm going to write on this.
You don't and can't possibly understand what it means to have your relapses stopped/greatly slowed as you have never once in your life had a relapse. It's as simple as that.





HarryZ wrote:
Ian and several other people have been told over and over by Harry Z that their drugs can't work and that the pharma industry is corrupt.


Nice twist but perhaps you should go back and read what I've said for quite some time. I have not said that the DMDs can't work but that their efficacy is a far cry from being effective in the treatment of MS. And if you think the MS pharma industry is so wonderful, then you have been living on a different planet. Did you completely miss the story on Serono having to pay millions in fines for their actions in paying docs under the table to RX Rebif?

I have never minded people disagreeing with my opinions. It makes for interesting threads. But please don't try and put words into my mouth. Thanks.

Harry
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Postby HarryZ » Thu Jun 09, 2011 8:42 am

I've read what you've written plenty long and the whole time you've complained that the DMD's not only don't work but that they are dangerous and mostly that the makers are aware of the dangers and try to hide it.


Sorry to disagree with you Bob. I've said that the CRABs efficacy is very poor (even the MS docs state that) and that Tysabri poses a danger due to the PML risk. You are using a very wide brush and generalizing to try and prove your point.And it isn't a secret that Biogen tries to hide the risks of PML. The FDA had to officially warn them for their marketing strategies. As Biogen sales people say, that's part of the price of doing business.

That said and to get specific, what would you like us to believe is the difference between
HZ wrote:I have not said that the DMDs can't work but that their efficacy is a far cry from being effective in the treatment of MS.


If you can't see any difference between "can't work" and "their efficacy is a far cry from being effective" then I guess we'll just have to agree to disagree.


And just recently you accused Ian of taking it out on others when he's having a bad day?? From another planet eh?


That's between Ian and me and he knows what I am talking about.

I hope Ian hasn't become next in the chain of thisisms pioneers to be chased off by the frothing ccsvi'ers.


Please don't feel sorry for Ian. Over the years he has been involved in a lot of heated debates and can handle himself.

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Postby Lyon » Thu Jun 09, 2011 9:00 am

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Postby HarryZ » Thu Jun 09, 2011 11:31 am

I suppose you're right if, unlike the greater part of the population, you don't find strong similarities between the meaning of "works" and "being effective". That's OK, we both know that "agree to disagree" really means "if you push this any farther I'm going to have to admit that I'm wrong" and I respect you too much to push you further into a corner.


Analysis of positions?! Don't quit your day job :D

I think poor Ian has a heart of gold and is mostly misunderstood as evidenced by newcomer HappyPoet's usual effort to assemble a lynch mob when someone doesn't share her opinions
HappyPoet wrote:TIMS should not tolerate his shocking (and sad) behavior.


Perhaps in the long run Ian may be understood when he realizes just what he has said or maybe how he has said it. I've shared a lot of private e-mails with him and that's the impression that I get.

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