Re: RA Talk from noted expert

[Guest guest]

Thanks so much Annette, this was a WONDERFUL talk that I would suggest

everyone listen to, a little long but you can stop and start.

in PA

On Sun, Mar 13, 2011 at 9:21 AM, Annette <anetto@...> wrote:

> The most Exciting Time Ever in the History of RA

>

> Finally the talk is up. This is a presentation by a well known expert and

> his talk was excellent!! I was there.

>

> If you want to skip most of the intro start at 11 minutes in.Just click on

> the talk at the top of the list

>

>

>

http://www.arthritis.ca/local%20programs/ca/publications%20and%20resources/prese\

ntations/default.asp?s=1

>

> If you have time you can listen.

>

> --

> Annette -

>

> --

> Annette - Toronto

>

> A positive attitude may not solve all your problems, but it will annoy

> enough people to make it worth the effort.’ *~Herm Albright***

>

>

>

[Guest guest]

Annette, thanks very much for posting the link for this talk. Very informative.

I thought the part about the lab tests was interesting in that the anti-CCP

test - specific for RA - can be positive for as long as 15 years before the

onset of symptoms. And if it is picked up early, the disease can be " shut off, "

although he didn't say just how.

Jan

On Mar 13, 2011, at 9:21 AM, Annette wrote:

> The most Exciting Time Ever in the History of RA

>

> Finally the talk is up. This is a presentation by a well known expert and

> his talk was excellent!! I was there.

>

> If you want to skip most of the intro start at 11 minutes in.Just click on

> the talk at the top of the list

>

>

http://www.arthritis.ca/local%20programs/ca/publications%20and%20resources/prese\

ntations/default.asp?s=1

>

> If you have time you can listen.

>

> --

> Annette -

[Guest guest]

Annette, this was so informative.  I learned a lot.  Thank you for sharing it.

Jody

Schaumburg, IL

________________________________

From: Annette <anetto@...>

Sent: Sun, March 13, 2011 8:21:32 AM

Subject: [ ] RA Talk from noted expert

The most Exciting Time Ever in the History of RA

Finally the talk is up.  This is a presentation by a well known expert and

his talk was excellent!!  I was there.

If you want to skip most of the intro start at 11 minutes in.Just click on

the talk at the top of the list

http://www.arthritis.ca/local%20programs/ca/publications%20and%20resources/prese\

ntations/default.asp?s=1

If you have time you can listen.

--

Annette  -

--

Annette  -  Toronto

A positive attitude may not solve all your problems, but it will annoy

enough people to make it worth the effort.’ *~Herm Albright***

[Guest guest]

Thanks so much for posting the link to this presentation, Annette. It

was very good.

One of our former longtime members, June Dixon, was from Toronto and a

patient of Dr. Keystone's. She was also very active in the Patient

Partners program.

Not an MD

On Sun, Mar 13, 2011 at 8:21 AM, Annette <anetto@...> wrote:

> The most Exciting Time Ever in the History of RA

>

> Finally the talk is up.  This is a presentation by a well known expert and

> his talk was excellent!!  I was there.

>

> If you want to skip most of the intro start at 11 minutes in.Just click on

> the talk at the top of the list

>

>

http://www.arthritis.ca/local%20programs/ca/publications%20and%20resources/prese\

ntations/default.asp?s=1

>

> If you have time you can listen.

>

> --

> Annette   -

[Guest guest]

Jan,

What Dr. Keystone is alluding to is that people who are anti-CCP

positive could be treated with DMARDs/biologics even before they are

symptomatic. Theoretically, that could prevent the disease from

developing in full, even halt it completely.

Early, aggressive therapy is important not only to prevent

irreversible joint damage, but because it can slow or stop certain

deleterious immune system alterations from occurring. There has been

some speculation and evidence that there is a " window of opportunity "

during which treatment can positively and permanently alter the course

of the disease.

What wasn't understood until relatively recently is that, for decades,

RA was treated in the wrong way - with the pyramid approach. That is,

bed rest and aspirin were tried first and, over a period of years, one

worked one's way up to methotrexate. Now we know methotrexate and,

arguably, the biologics should be used immediately.

Not an MD

On Sun, Mar 13, 2011 at 4:28 PM, Jan <jmas@...> wrote:

> Annette, thanks very much for posting the link for this talk.  Very

informative.

>

>  I thought the part about the lab tests was interesting in that the anti-CCP

test  - specific for RA - can be positive for as long as 15 years before the

onset of symptoms.  And if it is picked up early, the disease can be " shut off, "

although he didn't say just how.

>

> Jan

[Guest guest]

I am anti-CCP positive and I asked my rheum of my siblings should get that test.

He said " no " because " we wouldn't treat it if there were no symptoms. " I wonder

how that fits with the new approach and if that is all still theory? Also, I am

not sure I would want to be treated if there were no symptoms. If they aren't

testing the general population for anti-CCP, how do they really know how many

people who are positive never develop RA? It's a relatively new test and I

wonder how much they really know. For me, I had symptoms beginning at the end

of December and have gone right on MTX in the hopes of preventing joint damage.

Janice in GA

>

> Jan,

>

> What Dr. Keystone is alluding to is that people who are anti-CCP

> positive could be treated with DMARDs/biologics even before they are

> symptomatic. Theoretically, that could prevent the disease from

> developing in full, even halt it completely.

>

> Early, aggressive therapy is important not only to prevent

> irreversible joint damage, but because it can slow or stop certain

> deleterious immune system alterations from occurring. There has been

> some speculation and evidence that there is a " window of opportunity "

> during which treatment can positively and permanently alter the course

> of the disease.

>

> What wasn't understood until relatively recently is that, for decades,

> RA was treated in the wrong way - with the pyramid approach. That is,

> bed rest and aspirin were tried first and, over a period of years, one

> worked one's way up to methotrexate. Now we know methotrexate and,

> arguably, the biologics should be used immediately.

>

>

>

> Not an MD

>

[Guest guest]

Hi, Janice.

We aren't at the point yet at which we would treat asymptomatic people

solely on the basis of certain disease markers. When that era arrives,

those with no symptoms but who have certain gene and antibody

combinations would probably be treated for a relatively short period

of time with DMARDs/biologics, and then the therapy would be stopped.

As Keystone also mentioned, MRI can show joint damage much earlier

than the standard x-rays. As imaging improves, it would probably also

be used to guide early therapy. There are some people who have no

outward signs of RA, but who already have joint damage. The disease is

underway silently.

Currently, there is evidence that induction therapy - hitting the

disease early and hard and then scaling back the medications - works.

This would also be a more economical approach because then instead of

years on biologics, maybe only a few months or a year are needed to

arrest the worst aspects of the disease.

In your case, you were given MTX early not only to prevent damage, but

to also try to prevent your immune system from becoming more abnormal.

Not an MD

On Mon, Mar 14, 2011 at 4:54 AM, jjo193 <jjo193@...> wrote:

> I am anti-CCP positive and I asked my rheum of my siblings should get that

test.  He said " no " because " we wouldn't treat it if there were no symptoms. "  I

wonder how that fits with the new approach and if that is all still theory?

Also, I am not sure I would want to be treated if there were no symptoms.  If

they aren't testing the general population for anti-CCP, how do they really know

how many people who are positive never develop RA?  It's a relatively new test

and I wonder how much they really know.  For me, I had symptoms beginning at the

end of December and have gone right on MTX in the hopes of preventing joint

damage.

>

> Janice in GA

[Guest guest]

I watched Dr. Keystone's video and it was very informative. I am going to ask

my rheum about the injections as a way to avoid liver damage, as the Dr. points

out the US is behind Canada in this area.

What was curious to me, though, is that Dr. Keystone said he doesn't diagnose RA

in the absence of swelling, but then talks about the anti-CCP test being 95%

reliable. That seems to be a contradiction. I had no swelling and was

initially diagnosed with PMR, but it was changed to RA based on the anti-CCP.

My symptoms were quite severe for the brief time I had them prior to treatment

with extreme stiffness to where I could hardly walk. No foot or hand

involvement, though. At the onset, I thought it was muscle pain in my legs and

arms from overdoing it on lifting when I cleaned the garage until it kept

getting worse instead of better. But no swelling. Anyone have any thoughts on

this?

Janice in GA

[Guest guest]

Janice, I've been wondering the same things. As far as I could ascertain, the

anti-CCP antibody test has only been around for some six years, so how would

they know that the test could be positive for as long as 15 years before the

onset of symptoms?

And yes, it's hard enough to decide to take powerful, potentially toxic drugs

when you have symptoms, let alone when you don't have any.

Jan

On Mar 14, 2011, at 5:54 AM, jjo193 wrote:

> Also, I am not sure I would want to be treated if there were no symptoms. If

they aren't testing the general population for anti-CCP, how do they really know

how many people who are positive never develop RA? It's a relatively new test

and I wonder how much they really know.

[Guest guest]

Annette,

I will watch this ASAP, it sounds really good. 

________________________________

From: Annette <anetto@...>

Sent: Sun, March 13, 2011 8:21:32 AM

Subject: [ ] RA Talk from noted expert

The most Exciting Time Ever in the History of RA

Finally the talk is up.  This is a presentation by a well known expert and

his talk was excellent!!  I was there.

If you want to skip most of the intro start at 11 minutes in.Just click on

the talk at the top of the list

http://www.arthritis.ca/local%20programs/ca/publications%20and%20resources/prese\

ntations/default.asp?s=1

If you have time you can listen.

--

Annette  -

--

Annette  -  Toronto

A positive attitude may not solve all your problems, but it will annoy

enough people to make it worth the effort.’ *~Herm Albright***

[Guest guest]

My RA started in 2001. Anti-CCP was not among the tests that my rheumy

at the time ordered. I think that he was already pretty certain that I

had RA at that time, though. The results of the other tests definitely

confirmed it.

Sue

On Mar 14, 2011, at 5:54 AM, jjo193 wrote:

> I am anti-CCP positive and I asked my rheum of my siblings should

> get that test. He said " no " because " we wouldn't treat it if there

> were no symptoms. " I wonder how that fits with the new approach and

> if that is all still theory? Also, I am not sure I would want to be

> treated if there were no symptoms. If they aren't testing the

> general population for anti-CCP, how do they really know how many

> people who are positive never develop RA? It's a relatively new

> test and I wonder how much they really know. For me, I had symptoms

> beginning at the end of December and have gone right on MTX in the

> hopes of preventing joint damage.

[Guest guest]

Janice,

It's true that those two positions of Keystone's are in conflict;

however, most referring physicians don't order the anti-CCP and he

might be talking about the typical scenario where another physician

sent him a patient to evaluate. RA is largely a clinical diagnosis. I

think that is his larger point.

Even with a positive anti-CCP but without any joint swelling, he might

wonder if that individual is in the other 5% or whether it is just too

early in the disease course for the swelling to have developed.

Have you had any imaging of your hands and feet?

Not an MD

On Mon, Mar 14, 2011 at 10:45 AM, jjo193 <jjo193@...> wrote:

> I watched Dr. Keystone's video and it was very informative.  I am going to ask

my rheum about the injections as a way to avoid liver damage, as the Dr. points

out the US is behind Canada in this area.

>

> What was curious to me, though, is that Dr. Keystone said he doesn't diagnose

RA in the absence of swelling, but then talks about the anti-CCP test being 95%

reliable.  That seems to be a contradiction.  I had no swelling and was

initially diagnosed with PMR, but it was changed to RA based on the anti-CCP.

>

> My symptoms were quite severe for the brief time I had them prior to treatment

with extreme stiffness to where I could hardly walk.  No foot or hand

involvement, though.  At the onset, I thought it was muscle pain in my legs and

arms from overdoing it on  lifting when I cleaned the garage until it kept

getting worse instead of better.  But no swelling.  Anyone have any thoughts on

this?

>

> Janice in GA

[Guest guest]

Jan,

The studies which produced the findings Keystone mentioned about

anti-CCP were done by analyzing blood that had been donated and stored

many years before.

http://www.ncbi.nlm.nih.gov/pubmed/21291540

http://www.ncbi.nlm.nih.gov/pubmed/14558078

In the future, if they could accurately predict who would develop RA,

the choices might come down to:

1) receive treatment immediately and for a relatively short period of

time, even though you have not fully developed the disease and are

asymptomatic, but possibly achieve permanent, drug-free remission

2) wait for the symptoms to appear and THEN receive treatment, risking

permanent damage and possibly require treatment for the rest of your

life

Not an MD

On Mon, Mar 14, 2011 at 2:10 PM, Jan <jmas@...> wrote:

> Janice, I've been wondering the same things. As far as I could ascertain, the

anti-CCP antibody test has only been around for some six years, so how would

they know that the test could be positive for as long as 15 years before the

onset of symptoms?

>

> And yes, it's hard enough to decide to take powerful, potentially toxic drugs

when you have symptoms, let alone when you don't have any.

>

> Jan

[Guest guest]

Yes, I had over 20 x-rays. I will discuss the findings at my next appt., but

the technician who called me led me to believe there was " some " arthritis in my

spine, feet and wrist, but none in my hands or ankles. He included my spine in

the x-rays because I was having some backaches.

When I asked her if the arthritis showing up could be age-related and not from

the disease she said yes. I replied, nothing too dramatic then? and she said

yes. So, I still need to see what the doctor says.

Janice in GA

>

> Janice,

>

> It's true that those two positions of Keystone's are in conflict;

> however, most referring physicians don't order the anti-CCP and he

> might be talking about the typical scenario where another physician

> sent him a patient to evaluate. RA is largely a clinical diagnosis. I

> think that is his larger point.

>

> Even with a positive anti-CCP but without any joint swelling, he might

> wonder if that individual is in the other 5% or whether it is just too

> early in the disease course for the swelling to have developed.

>

> Have you had any imaging of your hands and feet?

>

>

>

> Not an MD

>

>

>

>

>

>