FW: Tracie on sarc

[Guest guest]

This is an excellent overview on sarc by our own distinguished Tracie.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

Date: Wed, 11 Feb 2009 11:41:23 -0500

There are some theories that state we probably ended up with a virus - possibly a rogue tb strain. Since it was viral, it went untreated, and somehow it turned on our immune systems, and now they don't shut down.What they do know is we produce too much of the TNF-a cells. The immune system sends out the white cells to fight infection, then when that crisis is over, the immune system sends out TNF-a cells, to clear out the white cells. Then it sends out TNF-b cells, to clear out the TNF-a and stragglers-- and we're back to "normal." Only we don't clear them out, we build one upon the other, and they calcify forming granulomas.There is also speculation that we have some "mycobacterium" that started this-- and there are hundreds of varieties of mycobac. However, we don't all test positive for mycobac-- so again it's hit and miss. They are now finding a huge correlation between people exposed to a lot of viruses (medical workers, teachers, clergy, grocery clerks...)

and pesticides, agriculture dusts and deserts-many of the vets that

spent time in Iran and Iraq are having problems, as are alot of the

people who worked at the Twin Towers --so there again, you've got

dust, ashes, and chemicals, etc.

They used to think this was a "rare" disease-- but it has been misdiagnosed or ignored in many- as our docs still think it's benign--and will burn itself out. What's interesting is that if you can forego the steroids-- prednisones, then it stands a higher chance of burning itself out. But for those of us where every sinus and allergy season meant we lived on SoluMedrol packs, and prednisone- we were up against the wall from the getgo. Add not being able to breathe, to think, walk, multi-task-- on and on.. and we end up on high dose steroids. We get the symptoms calmed down, we wean off it- and we're good for awhile. Then it comes back, maybe as sarcoid-induced arthritis (which will be misdiagnosed as arthritis, or fibromyalgia, or chronic fatigue) and we may be short of breath and need a nap following our morning shower, and we may have iritis (inflammatio of the iris of the eye) and we may have leg or extremity weakness-- and we're off and running. They want to put you back on pred-- the magic bullet, but that doesn't stop the progression. It just masks the symptoms.

When it comes back, or is effecting the CNS or PNS (Central or Peripheral Nervous System) then you have to get them to look at steroid sparing meds-- the DMARDS. (Disease Modifying Anti-rheumatic drugs), the anti-inflammatories, BRM's-- Biological Response Modifiers--

ie. Enbrel, Humira, Remicade, Cellcept-- and see what combo is going to work.The site www.arthritis.org has a fantastic drug section that explains all these meds, and what they do and the side effects-- it is the best $20 a yr I spend to get the magazine ARTHRITIS TODAY. That way I have the annual copy of the book. There is a link in the library also.

Anyway, I know there is so much more we can share with you, but my brain just frosted over, so I'll go at it again later..Take care,TracieNS Co-owner/moderator

Windows Live™: Keep your life in sync. Check it out.

[Guest guest]

I love this. They recategorized Methotrexate when being given for diseases like Sarc or Rheumatoid Arthritis from a Chemotherapy to a "DMARD" so people don't freak out that their being put on Chemotherapy. Maybe it's a good thing, so people don't worry about taking it so much but what happened to truth in advertising, LOL

PS This is a very good explanation of one of the theories behind Sarc, When I first researched it (when I was diagnosed) I was surprised to find out that Health Care Practitioners were in the top 10 fields for getting Sarc (although I'm the only Doctor from this area that I've found that has it)

I blame the fact that I grew up on Staten Island 2 mile from Fresh Kills Land Fill (the world largest garbage dump) and right over the bridge from all the industry in Newark and Bayonne NJ.

My Grandparents who never lived in SI lived to be 85, 88, 92 and 100. My Dad passed of Lymphoma 5 years ago (at 75) and my Mother was diagnosed with Lung Cancer and had half of the right lung removed a year ago next Tuesday at 76 (She gave up smoking cold turkey 35 years ago). I came down with Sarc at 38 but wasn't diagnosed until 45

So moral of the story children---don't live on Staten Island or go into Health care LOL.

DMARDS. (Disease Modifying Anti-rheumatic

drugs),

FW: Tracie on sarc

This is an excellent overview on sarc by our own distinguished Tracie.

Ramblin' Rose

Moderator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

Date: Wed, 11 Feb 2009 11:41:23 -0500

There are some theories that state we probably ended up with a virus -

possibly a rogue tb strain. Since it was viral, it went untreated,

and somehow it turned on our immune systems, and now they don't shut

down.

What they do know is we produce too much of the TNF-a cells. The

immune system sends out the white cells to fight infection, then when

that crisis is over, the immune system sends out TNF-a cells, to

clear out the white cells. Then it sends out TNF-b cells, to clear

out the TNF-a and stragglers-- and we're back to "normal." Only we

don't clear them out, we build one upon the other, and they calcify

forming granulomas.

There is also speculation that we have some "mycobacterium" that

started this-- and there are hundreds of varieties of mycobac.

However, we don't all test positive for mycobac-- so again it's hit

and miss.

They are now finding a huge correlation between people exposed to

a lot of viruses (medical workers, teachers, clergy, grocery clerks...)

and pesticides, agriculture dusts and deserts-many of the vets that

spent time in Iran and Iraq are having problems, as are alot of the

people who worked at the Twin Towers --so there again, you've got

dust, ashes, and chemicals, etc.

They used to think this was a "rare" disease-- but it has been

misdiagnosed or ignored in many- as our docs still think it's benign--

and will burn itself out.

What's interesting is that if you can forego the steroids--

prednisones, then it stands a higher chance of burning itself out.

But for those of us where every sinus and allergy season meant we

lived on SoluMedrol packs, and prednisone- we were up against the

wall from the getgo.

Add not being able to breathe, to think, walk, multi-task-- on and

on.. and we end up on high dose steroids. We get the symptoms calmed

down, we wean off it- and we're good for awhile. Then it comes back,

maybe as sarcoid-induced arthritis (which will be misdiagnosed as

arthritis, or fibromyalgia, or chronic fatigue) and we may be short

of breath and need a nap following our morning shower, and we may

have iritis (inflammatio of the iris of the eye) and we may have leg

or extremity weakness-- and we're off and running. They want to put

you back on pred-- the magic bullet, but that doesn't stop the

progression. It just masks the symptoms.

When it comes back, or is effecting the CNS or PNS (Central or

Peripheral Nervous System) then you have to get them to look at

steroid sparing meds-- the DMARDS. (Disease Modifying Anti-rheumatic

drugs), the anti-inflammatories, BRM's-- Biological Response Modifiers--

ie. Enbrel, Humira, Remicade, Cellcept-- and see what combo is going to work.

The site www.arthritis.org has a fantastic drug section that explains

all these meds, and what they do and the side effects-- it is the

best $20 a yr I spend to get the magazine ARTHRITIS TODAY. That way

I have the annual copy of the book. There is a link in the library also.

Anyway, I know there is so much more we can share with you, but my

brain just frosted over, so I'll go at it again later..

Take care,

Tracie

NS Co-owner/moderator

Windows Liveâ„¢: Keep your life in sync. Check it out.