Important new weapon against aggressive MS

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Important new weapon against aggressive MS

Postby beyondms » Tue Apr 24, 2007 1:23 pm

New Weapon against Multiple Sclerosis
22 Apr 2007 11:23:00

A new breakthrough medicine getting multiple sclerosis sufferers’ hopes up has worked its way through the market since early April. The new medicine promises to reduce deterioration by 54% and slow the annual relapse rates by 68% in two years’ time. Injected and administered once a month, all pension funds cover its cost.

In particular, the new medicine contains a really effective and drastic compound that, although it does not promise to knock the disease down, it improves the patients’ quality of life. It blocks a "key" the lymph cells have to enter the central nerve system, thus preventing the disease from expanding.

Greek patients also took part in the clinical studies. None of the patients developed any undesirable symptoms. Its efficiency against more aggressive forms of multiple sclerosis has been of vital importance in a battle that initially seemed doomed.

Link:

http://news.ert.gr/en/4/24693.asp
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Postby Lyon » Tue Apr 24, 2007 2:37 pm

Thanks beyondms,

Sounds really interesting but they don't say anything specific.

The little they do say makes me wonder if Greece is a little behind the times in hearing about Tysabri?

Bob
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Postby robbie » Tue Apr 24, 2007 2:53 pm

Greece is a little behind the times in hearing about Tysabri?

Why do u say that Bob is it the same?
Had ms for over 19 years now.
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Postby Lyon » Tue Apr 24, 2007 2:58 pm

Hi robbie,
It's hard to tell because the article doesn't give any meaningful specifics, but what little it does say sounds an awful lot like Tysabri.

I really, really don't think it's something new that we haven't heard about.
Bob
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Postby robbie » Tue Apr 24, 2007 3:49 pm

:cry:
Had ms for over 19 years now.
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Postby Lyon » Tue Apr 24, 2007 3:59 pm

robbie wrote::cry:

I'll try to find out if Tysabri has recently been approved in Greece just to make sure but if you notice they don't actually say this drug was developed just now but what they mention is that it "has worked its way through the market since early April".

Gut feeling is that for some, at this point unknown reasons, Tysabri is just becoming available in Greece.

Bob

Sorry robbie, I can't locate the original source of that article but the percentages are the same as Tysabri, it's a monthly infusion like Tysabri and Greece follows the Western medical testing protocols, meaning that we would have heard about it long before it was issued as a treatment if it was something new. The article almost certainly regards Tysabri.
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Postby beyondms » Tue Apr 24, 2007 5:52 pm

Lyon wrote: The article almost certainly regards Tysabri.


I am almost sure it's about Tysabri given this link:

http://www.tysabri.eu/

I am not willing to risk death with PML if it is Tysabri.

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Postby Lyon » Tue Apr 24, 2007 7:29 pm

beyondms wrote:I am not willing to risk death with PML if it is Tysabri.
The logical side of my mind tells me that there isn't nearly as much to fear from Tysabri as we seem to believe but I sympathise with your feelings. Like I told Ewizabeth, logical or not I'd have been scared to death if my wife would have opted to go on Tysabri.
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Postby CureOrBust » Wed Apr 25, 2007 4:00 am

My neuro was VERY quick to point out that it wasnt tysabri alone that caused PML, it was in combination with an interferon.

I recently was sent some documentation regarding the FTY720 trial in australia, and it was interesting how much reference it made to tysabri. It works in a similar manner, except that instead of blocking it at the BBB, it blocks the badies from the whole body. They mention that although no one has contracted PML while on FTY720, because of tysabri, they will be watching out for it very carefully. Another benefit of FTY720 was that it was a daily thing so reversing the effects is fairly quick (compared to monthly tysabri injections)
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Postby HarryZ » Thu Apr 26, 2007 6:21 am

CureOrBust wrote:My neuro was VERY quick to point out that it wasnt tysabri alone that caused PML, it was in combination with an interferon.


I'm surprised to hear your neuro make a comment like that because to date, nobody has been able to determine just why those 3 patients using Tysabri ended up with PML.

Soon after Tysabri got initially pulled, James Mullen, CEO of Biogen, made the comment that Avonex had a history of hundreds of thousands of patient months behind it without any known case of PML. Of course he made this statement to protect the marketing aspect of Avonex but also to indicate that Avonex had no known association with the deadly virus infection.

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Postby Lyon » Thu Apr 26, 2007 3:02 pm

Whoa there Harry, there's no love lost between the approved MS drugs and myself but what is surprising about Cure's Neuro making a factual statement?

Other significant incidence of PML are found in AIDS patients and people whose immune system is intentionally severely compromised for organ transplantation.

The issue is often raised that in the Tysabri Crohn's death, Avonex wasn't involved, but in truth the Crohn's patient's system was severely compromised with other drugs.

Only time will tell if PML remains a concern with mono Tysabri but at this point it seems more accurate to consider that oversuppressing the immune system is more to blame for PML incidence than Tysabri specifically.

Bob
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Postby HarryZ » Thu Apr 26, 2007 7:06 pm

Hi Bob,

Lyon wrote:Whoa there Harry, there's no love lost between the approved MS drugs and myself but what is surprising about Cure's Neuro making a factual statement?


Almost every article that I have read about PML and Tysabri has stated that nobody really knows the mechanism of what happened to those MS patients who contracted the PML. So for any doc to come out and state that it was the combination of the drugs is very surprising to say the least.

Other significant incidence of PML are found in AIDS patients and people whose immune system is intentionally severely compromised for organ transplantation.


Yes that is true but despite Avonex being used on thousands and thousands of MS patients for years, the drug had not been known to cause or be associated with PML.

The issue is often raised that in the Tysabri Crohn's death, Avonex wasn't involved, but in truth the Crohn's patient's system was severely compromised with other drugs.


Well, let me tell you the behind the scenes story about the Crohn's patient. He had been on two immunosuppressive drugs prior to starting on Tysabri. One drug was Infliximab which he had stopped using 20 months earlier. The other was Azathioprine which he stopped 8 months before beginning Tysabri. I am guessing that both these drugs and their side effects were long gone from his system by then.

The patient was also quite healthy other than the side-effects of Crohn's which he had been living with for 28 years. He was an outdoors man who hunted and fished. His blood work was normal before starting on the Tysabri.

By the 6th infusion, he was well on his way to dying from PML and his blood worked indicated this. Yet, when he died, the family was told that he died from a brain tumor!! The original diagnosis of the brain tumor was made on July 17, 2003 but wasn't placed on to the patient's medical chart until July 31,2003! Normally it only takes about 1-3 days to make this kind of brain tumor diagnosis. There is more but I won't go into it.

The family was refused access to the medical records and had to hire a lawyer who eventually forced the issue. When they finally got to read some of the information, the hospital where the patient died suggested that they not make any fuss about this!!!

And I can see you already asking how in the heck do I possibly know about this info. Let's just say it came from an "extremely" reliable and accurate source who provided it to me a few years ago and I can assure you that I did not make up one bit of it.

Only time will tell if PML remains a concern with mono Tysabri but at this point it seems more accurate to consider that over suppressing the immune system is more to blame for PML incidence than Tysabri specifically.


Absolutely correct but until "time" does arrive, comments by docs that say it was the Avonex combination that was responsible are, in my opinion, quite out of line.

Harry
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Postby CureOrBust » Fri Apr 27, 2007 2:50 am

HarryZ wrote:I'm surprised to hear your neuro make a comment like that because to date, nobody has been able to determine just why those 3 patients using Tysabri ended up with PML.
Not really suprising when you note he is one of the main Tysabri contacts in sydney.

Lyon wrote:oversuppressing the immune system is more to blame for PML incidence than Tysabri specifically.
Were you hiding in the room somewhere? they were pretty much his words.

HarryZ wrote:nobody really knows the mechanism of what happened to those MS patients who contracted the PML. So for any doc to come out and state that it was the combination of the drugs is very surprising to say the least.
Although the deaths form a VERY small sample size in themselves, its the best explanation the doctors can come to (if pushed), given the facts.

HarryZ wrote:I am guessing that both these drugs and their side effects were long gone from his system by then.
"...its very supprising to say the least..." you have stated this. Have you seen any research that proves that this time frame provides complete reversal of any effects? What if during the treatment the virus multiplied, and did not reduce to its prior level, so that giving tysabri just sealed the deal. I do not know, but I think its possible.

The tysabri / avonex theory makes sense to me (occums razor), and until a better theory comes forward (ie into my lap) I'll buy it. This does not mean I dont think tysabri alone will not raise your PML risk, simply that in combination, I think I agree with my neuro in that it increases the risk (it definitely wont reduce the risk)

Generally speaking, your indignation that he presented his thoughts (as fact) actually impresses me a little in that I would prefer a doctor to present his best thoughts for an unknown than simply sitting on the fence. Although he could of made it clearer that it wasn't proven (but that would just waste my limited time with him). I am someone who thinks (probably a little too much) for themselves, so everything someone tells me tasts salty.
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Postby HarryZ » Fri Apr 27, 2007 7:09 am

Not really suprising when you note he is one of the main Tysabri contacts in sydney.


He may be a "main Tysabri contact in Sydney" but does that mean he knows something that nobody else has been able to determine? So far, that's all that I've read or heard about the PML/Tysabri connection has been speculative and unproven. Some researchers believe it was the combo of the drugs while others feel it was the Tysabri alone that caused the PML to unleash. Even Dr. L. Steinman, the co-inventor of Tysabri, has been on record as saying that the resulting problems when using a drug like this were predicted.

Although the deaths form a VERY small sample size in themselves, its the best explanation the doctors can come to (if pushed), given the facts.


That's exactly my point....it's the "best explanation" some docs can come up with but nobody has been able to prove anything. There's a difference in saying that "we think it was the combination of the drugs and caused the PML" as opposed to going around and emphatically saying "it WAS the combination of the two drugs". In medicine one has to scientifically prove a theory, not just think it. Look at what has happened to the theory about MS itself.....for years most docs said that MS is solely and auto-immune disease but nobody could prove it. Now, new evidence is suggesting there are other mechanisms involved in the disease that have nothing to do with the immune system.

"...its very supprising to say the least..." you have stated this. Have you seen any research that proves that this time frame provides complete reversal of any effects? What if during the treatment the virus multiplied, and did not reduce to its prior level, so that giving tysabri just sealed the deal. I do not know, but I think its possible.


I can only ask you the same question...have you seen any research as to how long these drugs remain in one's system after the patient has stopped using it? I can only go by what the patient's blood-work was showing prior to him starting on Tysabri and what happened after the first couple of infusions. Yes, there are likely many possible explanations as to what happened to this Crohn's patient but nobody knows for sure. And the family of the patient was more than upset at the "official" explanation from Biogen that he was severely immune-system compromised when going on the Tysabri since there was no mention of this at all to them until the real cause of death was eventually determined. They were also not very happy that Biogen would not originally allow them to review the medical records until a lawyer got involved.

The tysabri / avonex theory makes sense to me (occums razor), and until a better theory comes forward (ie into my lap) I'll buy it. This does not mean I dont think tysabri alone will not raise your PML risk, simply that in combination, I think I agree with my neuro in that it increases the risk (it definitely wont reduce the risk)


Well, I've read comments from docs that state since Avonex has never been known to cause PML and that the problem only happened when Tysabri was used, it was Tysabri that was the culprit. But with only 3 reported cases of PML to work with, it's more than difficult to come up with any kind of scientifically proven theory. And until a lot more research has been done, we will see the Touch program hopefully monitoring these patients closely.

Generally speaking, your indignation that he presented his thoughts (as fact) actually impresses me a little in that I would prefer a doctor to present his best thoughts for an unknown than simply sitting on the fence. Although he could of made it clearer that it wasn't proven (but that would just waste my limited time with him). I am someone who thinks (probably a little too much) for themselves, so everything someone tells me tasts salty.


"Indignation"??? Hmmm....I made the statement that I believed his comment to be "interesting" about the Avonex/Tysabri combo. There was nothing indignant about it from my point of view and I'm sorry that you feel the word "indignant" = "interesting" because that was not my intent. But I guess that is one of the problems that exists in trying to interpret one's meaning on the internet.

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Postby Lyon » Fri Apr 27, 2007 8:59 am

HarryZ wrote:That's exactly my point....it's the "best explanation" some docs can come up with but nobody has been able to prove anything. There's a difference in saying that "we think it was the combination of the drugs and caused the PML" as opposed to going around and emphatically saying "it WAS the combination of the two drugs".
Hi Harry,
This is not meant to be critical Harry but knowing your long dislike for Tysabri I should have realized that you would read
My neuro was VERY quick to point out that it wasnt tysabri alone that caused PML, it was in combination with an interferon.
as an opinion that Tysabri played no part in the PML deaths where I (and probably most people) read it literally...that the PML cases didn't arise from Tysabri mono treatment but from from the combination therapies, and that's the situation as it was.

The argument that Avonex has (later edit) never otherwise been involved in PML incidence is an easy and seemingly valid argument, but maybe isn't quite so valid.

For one thing, under everyday conditions PML is easy to misdiagnose. Keep in mind that anything involving AIDS, organ transplant and clinical trials are all situations which are monitored with intense scrutiny. Much more scrutiny than someone on the street could ever expect to have their health, or death, monitored.

Before the Tysabri/PML deaths it was generally understood that PML was due to oversuppression. Considering that suppression and oversuppression is the accepted for these "autoimmune" diseases, it wouldn't seem surprising if undiagnosed PML isn't a common occurrance regardless of the suppression drugs used, although that would be impossible to prove one way or the other.

Nowdays autopsies are rarely every performed and in a situation when someone has a documented history of "autoimmune" disease treated by immune suppression?? I imagine it's very, very seldom that anyone would question WHY they died and request an autopsy.

I did check the Feb 28, 2008 New England Journal of Medicine and found that you were right about the length of time which had passed since the Crohn's/PML patient was on....I think it was Imuran and Remicade.

Bob
Last edited by Lyon on Fri Apr 27, 2007 12:43 pm, edited 1 time in total.
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