Author Topic: Rituximab in US- Dr. Kogelnik.  (Read 4116 times)

Roy

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Rituximab in US- Dr. Kogelnik.
« on: January 05, 2012, 01:35:13 PM »
This is a blog about her first visit to Dr. Kogelnik.

http://bikechick06.blogspot.com/2012/01/visit-at-dr-kogelniks-office.html

"So far he is getting the same results as the Norwegian study and he is in contact with dr Fluge and Mella once every 2 weeks. he is expecting that clinical trials will happen within a year."

Thanks to XGA for the link. :)
ME/"CFS" patients are too disabled to do adequate advocacy. Other diseases have far more activists -- usually family members. How can we get more good healthy people involved?
 
ME/"CFS" since 1970 after mononucleosis at age 16.
Volunteer ME/"CFS" Washington DC Lead Lobbyist in the early 90s.

Tango

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #1 on: January 05, 2012, 01:47:17 PM »
What are they using in the study to assess if people are getting better?
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

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since

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #2 on: January 05, 2012, 06:14:58 PM »
This is a blog about her first visit to Dr. Kogelnik.

http://bikechick06.blogspot.com/2012/01/visit-at-dr-kogelniks-office.html

"So far he is getting the same results as the Norwegian study and he is in contact with dr Fluge and Mella once every 2 weeks. he is expecting that clinical trials will happen within a year."

Great news! I wonder how many patients he is using it with and also if he is using the new infusion schedule?
Quality over quantity.

bakercape

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #3 on: January 05, 2012, 07:24:56 PM »
This is encouraging news. Thanks Roy
“Any man who is attached to things of this world is one who lives in ignorance and is being consumed by the snakes of his own passions”
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Levi

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #4 on: January 05, 2012, 07:48:45 PM »
Personally, I would never do this due to the small but fatal  risk of PML.  However, it is fascinating to me, and I have the highest hopes for recovery in the patients that forge ahead with it.  I understand how important it is to possibly have your life back.  Best of luck and thanks for sharing.

Dr. Yes

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #5 on: January 05, 2012, 08:10:13 PM »
Personally, I would never do this due to the small but fatal  risk of PML. 

It is remarkable that despite the risks Rituximab was considered safe enough to launch multiple clinical trials based ultimately on a single report of improvements in a CFS patient during an RA study, while ARVs have been deemed "unsafe" and "too toxic" for use in CFS by a loud chorus of pundits (most of whom appear to have no clinical experience with ARVs or CFS..)
« Last Edit: January 05, 2012, 08:17:29 PM by Dr. Yes »
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Tango

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #6 on: January 05, 2012, 08:18:50 PM »
It is remarkable that despite the risks Rituximab was considered safe enough to launch multiple clinical trials based ultimately on a single report of improvements in a CFS patient during an RA study, while ARVs have been deemed "unsafe" and "too toxic" for use in CFS by a loud chorus of pundits (most of whom appear to have no clinical experience with ARVs or CFS..)

Yep!
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

liquid sky

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #7 on: January 05, 2012, 08:22:18 PM »
It is remarkable that despite the risks Rituximab was considered safe enough to launch multiple clinical trials based ultimately on a single report of improvements in a CFS patient during an RA study, while ARVs have been deemed "unsafe" and "too toxic" for use in CFS by a loud chorus of pundits (most of whom appear to have no clinical experience with ARVs or CFS..)

Maybe an autoimmune answer is more "acceptable" to some than a retroviral one? Certainly, a lot less liability involved.

Tango

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #8 on: January 05, 2012, 08:37:13 PM »
Maybe an autoimmune answer is more "acceptable" to some than a retroviral one? Certainly, a lot less liability involved.

Autoimmune would still be retroviral in origin. It is more acceptable to some to bury the entire disease along with the sick.
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

beesknees

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #9 on: January 05, 2012, 08:54:56 PM »
It does seem like there is a good number of CFS people with a high ANA. I thought there was a poll on the forums that asked this question but I cant find it. In 2008,  Dr. David Bell said 25% of CFS patients' have a positive ANA and also have some autoimmunity problems. 29% in Fibromyalgia.

This study was done by Kings College. 2002- Detected 15% ANA positive cases amongst CFS patients. In that paper they combined the results from two different chronic fatigue clinics (Boston and Seattle) in which there were differences in means of recruitment of CFS patients (different method of prescreening) as well as significantly varying results for ANA (Boston −8%; Seattle −20%).Two additional studies found some evidence of ANA prevalence (50%), in Japanese children with nonspecific chronic symptoms similar to CFS (diagnosed as ‘autoimmune fatigue syndrome’ in these studies). 

bakercape

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #10 on: January 05, 2012, 08:56:29 PM »
It is remarkable that despite the risks Rituximab was considered safe enough to launch multiple clinical trials based ultimately on a single report of improvements in a CFS patient during an RA study, while ARVs have been deemed "unsafe" and "too toxic" for use in CFS by a loud chorus of pundits (most of whom appear to have no clinical experience with ARVs or CFS..)

 Your right. It Doesn't make any sense.

I am wondering if it will lead to a round about path to accepting/discovering a retrovirus in ME patients. It begs the question of why does depleting B cells help many of us.  I'm sure this will be a logical step of study going forward.

If the medical establishment can't accept direct evidence all at once can they digest it better in slower steps?

This is great progress. At least if it holds up and expands it can shut up the Psyche crap.
« Last Edit: January 05, 2012, 08:59:11 PM by bakercape »
“Any man who is attached to things of this world is one who lives in ignorance and is being consumed by the snakes of his own passions”
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Robyn

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #11 on: January 05, 2012, 09:03:13 PM »
The first year I got sick I had a slightly positive ANA.  All others have been normal. Personally I don't think I would take this as I'm not desperate enough yet.  That could change though.  It is also something like $60,000 for the treatment. But that could change too.  I wouldn't knock it if others tried it either.  If there is any medication that will stop the suffering and let patients live a more normal life  I'm all for it.

Karin

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #12 on: January 05, 2012, 09:03:52 PM »
At $6000.00 a shot, you bet Rituximab's use is being encouraged. Aren't monoclonal antibodies a super cash cow for Big Pharma. Added bonus is those are produced on human/mouse hybrid cells. So if MLVs are finally found in ME patients, one could blame it on Rituximab treatment, how convenient.

I am sorry I am so negative, it is great that Rituximab is being so helpful to some ME patients.

liquid sky

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #13 on: January 05, 2012, 09:05:03 PM »
Yes, it definitely takes it out of the psych arena. I'm looking forward to additional data coming out of the rituximab studies in Norway. They are looking at immune markers and what changes with this therapy. More pieces of the puzzle.

There seems to be an autoimmune aspect to ME. I have a positive ANA. The inflammation is quite severe for me.

Tango

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Re: Rituximab in US- Dr. Kogelnik.
« Reply #14 on: January 05, 2012, 09:08:11 PM »
Your right. It Doesn't make any sense.

I am wondering if it will lead to a round about path to accepting/discovering a retrovirus in ME patients. It begs the question of why does depleting B cells help many of us.  I'm sure this will be a logical step of study going forward.

If the medical establishment can't accept direct evidence all at once can they digest it better in slower steps?

This is great progress. At least if it holds up and expands it can shut up the Psyche crap.

It won't only be that Rituximab depletes B cells.  It also effects NFkappaB levels, which HGRVs would raise. 
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin