Re: So, now I have to make a decision

[Guest guest]

Hi .

 

If it were me, I would begin the MTX as soon as possible and see how you do

while on it.  It does slow the progression of this disease and helps are

joints, etc.  I have been on it for 7 years, since day one.  I have no issues

with it.  I did switch to self inject. each month as the pills made me so

deathly sick to my stomach 24/7 I could not take it anymore.

 

I wish you good luck if you decide to try it.  Everyone is different as you can

tell from all the posts here.

 

Hugs,

 

Barbara

 

[Guest guest]

Hi

I'm wondering if you doc is a rheumatologist.  RA can be difficult to diagnose

at first,because there's no real test to be certain.  I am sero-negative but I

have all of the criteria that meets the diagnosis, and blood testing ruled out

everything else out that could have similar symptoms.  He put me on pred and

MTX.  I was scared about the MTX.  Everyone is.  This is why doc tests you

liver

function etc. BEFORE you start, and frequently during treatment, so as to catch

any problems.  If you are feeling unsure, get a second opinion!

Amy

________________________________

From: " michelle_collins@... " <michelle_collins@...>

Sent: Fri, April 1, 2011 2:00:05 PM

Subject: [ ] So, now I have to make a decision

 

Hi all,

I went to the doc today for blood results etc. Basically, she's pretty certain

that I have RA but cannot give me a conclusive diagnosis, despite all the

symptoms (symetrical pain, swelling, elbows, wrists, fingers, toes etc). RA was

negative but CRP and ESR are elevated.

She put me on celebrex 2 1/2 weeks ago and I don't find much relief...I may get

a 4 hour window where I feel ok, she suggested I could do up it to 2, 200mg per

day if I want to for awhile....or...methotrexate. I know there are side effects,

so what to do? Basically I've been having symptoms for almost 4 months, it could

take another 4 to actually make a conclusive diagnosis. If I wait, damage could

occur, or it may not, who knows?

Please advise:)

[Guest guest]

I would go ahead and try the MTX and see if it helps you. While celebrex

will help with inflammation it will not stop the progression of RA. The

other issue to consider is that the higher the dose of celebrex the more

stomach issues you could develop. For stomach reasons also I would suggest

starting with the MTX injections if you have any kind of stomach issues. I

tried the MTX but it didn't work enough for me. The only side effects I had

were nausea and being very tired all the time. Folic acid taken with the MTX

will help to counteract those side effects.

Remember that all of the RA meds are going to come with a mile long list of

side effects. They have to list every side effect that has ever been

reported to them to cover themselves legally. That in no way means you will

have any of them and certainly not all of them. The alternative of letting

the RA have it's way and it moving to my organs after my joints is enough

motive for me to try the meds despite the laundry list of side effects in

most cases.

I hope you find your magic meds and much needed relief very soon.

Jeanette in Houston

-- [ ] So, now I have to make a decision

Hi all,

I went to the doc today for blood results etc. Basically, she's pretty

certain that I have RA but cannot give me a conclusive diagnosis, despite

all the symptoms (symetrical pain, swelling, elbows, wrists, fingers, toes

etc). RA was negative but CRP and ESR are elevated.

She put me on celebrex 2 1/2 weeks ago and I don't find much relief...I may

get a 4 hour window where I feel ok, she suggested I could do up it to 2,

200mg per day if I want to for awhile....or...methotrexate. I know there are

side effects, so what to do? Basically I've been having symptoms for almost

4 months, it could take another 4 to actually make a conclusive diagnosis.

If I wait, damage could occur, or it may not, who knows?

Please advise:)

------------------------------------

[Guest guest]

Hi,

No, she isn't a rheumatologist but I would have a 3 yr. wait to see one here

where I am from.

A friend reccomended another doctor so yes, I will be going there this month.

Thank you for your reply.

M

[Guest guest]

Did you have the anti-CCP blood test? It is supposed to be definitive for RA if

it is positive, although you can still have RA if it is negative.

Janice in GA

--- In , " michelle_collins@... " <michelle_collins@...>

wrote:

>

> Hi,

> No, she isn't a rheumatologist but I would have a 3 yr. wait to see one here

where I am from.

> A friend reccomended another doctor so yes, I will be going there this month.

> Thank you for your reply.

> M

>

[Guest guest]

You NEED a rheumy, a 3 year wait, WOW! I think a second opinion is a

definate. I take it that you're in Canada, I didn't think it was that long

a wait.

in PA

Thank God in the USA

On Fri, Apr 1, 2011 at 4:05 PM, michelle_collins@... <

michelle_collins@...> wrote:

>

>

> Hi,

> No, she isn't a rheumatologist but I would have a 3 yr. wait to see one

> here where I am from.

> A friend reccomended another doctor so yes, I will be going there this

> month.

> Thank you for your reply.

> M

>

>

[Guest guest]

Janice,

A caution about the anti-CCP antibody laboratory test:

Not all versions of the anti-CCP tests have the same specificity for

RA, and none of them are 100% specific for RA. Also, low-level

positivity is probably not as meaningful as detection of high titers

of anti-CCP antibodies.

Not an MD

On Fri, Apr 1, 2011 at 3:10 PM, jjo193 <jjo193@...> wrote:

> Did you have the anti-CCP blood test?  It is supposed to be definitive for RA

if it is positive, although you can still have RA if it is negative.

>

> Janice in GA

[Guest guest]

Yes, you are right . HIgh positive, over 60 I think it is, indicates RA and

mine has been tested twice, the lowest being about 150. I have read it is over

90% accurate...but that is in conjunction with symptoms. Otherwise it is

probably predicting future RA...when you are getting a high positive. For a

person who has suspected RA, it can be useful to help determine yes or no. I

think they aren't using the old version anymore, so I am assuming the new

version is standard....but I am not sure. Heck, I am hoping they find out the

test is a bunch of malarkey and I really don't have RA!

Janice in GA

> > Did you have the anti-CCP blood test?  It is supposed to be definitive for

RA if it is positive, although you can still have RA if it is negative.

> >

> > Janice in GA

>

[Guest guest]

Hi ,

If you trust your rheumy, I wouldn't be in a hurry for a firm diagnosis.

Without definitive bloodwork, diagnosing RA requires monitoring your

symptoms over time. It took a full year for me to get an RA diagnosis,

though my Rheumy suspected it from the first visit.

RA does not cause damage overnight. You can afford to take a few months to

monitor progress and response to various treatments. RA drugs can be super

helpful and lifestyle saving, but they are also quite powerful, and

something you don't want to take if you don't have to.

I have a hard time tolerating methotrexate. It made me feel like I had the

flu for about 3 days per week, but it did a great job reducing my

inflammation. I'm now on a combination of a low dose of methotrexate, to

reduce the side effects, and leflunomide (arava), which is working well for

me with fewer side effects, except the constant gi problems every med seems

to cause for me.

My 2cents. I'm no doc. Just a run of the mill RA patient!

Best wishes for good days,

[Guest guest]

Hi, Janice.

I just didn't want you or anyone else thinking that any of the

anti-CCP antibody tests are 100% specific for RA. There is no doubt

that testing for anti-CCP antibodies can be very useful in helping

establish an RA diagnosis though.

There are several versions of the test, so the interpretation of the

results and the cutoff for normal depends on which test was done and

the laboratory that performed it.

It would be nice to find out that you don't have RA!

Not an MD

On Fri, Apr 1, 2011 at 5:44 PM, jjo193 <jjo193@...> wrote:

> Yes, you are right .  HIgh positive, over 60 I think it is, indicates RA

and mine has been tested twice, the lowest being about 150.  I have read it is

over 90% accurate...but that is in conjunction with symptoms.  Otherwise it is

probably predicting future RA...when you are getting a high positive.  For a

person who has suspected RA, it can be useful to help determine yes or no.  I

think they aren't using the old version anymore, so I am assuming the new

version is standard....but I am not sure.  Heck, I am hoping they find out the

test is a bunch of malarkey and I really don't have RA!

>

> Janice in GA

[Guest guest]

All I can say is that I was diagnosed with PMR until the anti-CCP test came

back. I asked the doctor if the change in diagnosis to RA was based just on the

anti-CCP and he said yes. I also asked him if it could become negative later

and he said it didn't matter. The levels of anti-CCP don't indicate how active

the disease is, so they don't keep on testing it. This doesn't make sense to

me...if I am diagnosed based on one thing, how does it not matter later??? But

that is what he said. Anti-CCP is relatively new and I don't have 100%

confidence in it....but maybe that is just wishful thinking on my part.

Janice in GA

>

> Hi, Janice.

>

> I just didn't want you or anyone else thinking that any of the

> anti-CCP antibody tests are 100% specific for RA. There is no doubt

> that testing for anti-CCP antibodies can be very useful in helping

> establish an RA diagnosis though.

>

> There are several versions of the test, so the interpretation of the

> results and the cutoff for normal depends on which test was done and

> the laboratory that performed it.

>

> It would be nice to find out that you don't have RA!

>

>

>

> Not an MD

>

[Guest guest]

I went on MTX from the beginning, even before they were sure it was RA.  It used

to make me a bit sick to my stomach, but that didn't last long- a few weeks. It

can save your joints from early damage.  I am also on Mobic for the

inflammation. I used to be on Celebrex, but the Mobic is cheaper and works

better for me. I also take 7.5 mg ( down from a whopping 40 mgs a day! ) of

Pred. I will be slowly phasing out the Pred over time. This combo works well for

me and without it, I am in a lot of constant pain.

 

Everybody's experience is different. You will find your " magic combo " if you

hang in there and communicate with your Doc until you find it.

 

in SC

Hi all,

I went to the doc today for blood results etc. Basically, she's pretty certain

that I have RA but cannot give me a conclusive diagnosis, despite all the

symptoms (symetrical pain, swelling, elbows, wrists, fingers, toes etc). RA was

negative but CRP and ESR are elevated.

She put me on celebrex 2 1/2 weeks ago and I don't find much relief...I may get

a 4 hour window where I feel ok, she suggested I could do up it to 2, 200mg per

day if I want to for awhile....or...methotrexate. I know there are side effects,

so what to do? Basically I've been having symptoms for almost 4 months, it could

take another 4 to actually make a conclusive diagnosis. If I wait, damage could

occur, or it may not, who knows?

Please advise:)

[Guest guest]

Janice,

Well, because of your symptoms and the positive anti-CCP results, you

can be very sure that something is going on. But because you have the

classic symptoms of PMR but not of RA, it would not be unreasonable to

think it might be PMR and not RA. On the other hand, your anti-CCP

results were enough to convince your rheumatologist that it is RA.

It's not uncommon for a patient to present with PMR symptoms and later

evolve to classic RA.

So far, repeated measurements of anti-CCP antibodies don't seem to be

useful. You would only measure them again if they reflected disease

activity (and it were a cheap enough test to do a lot). There have

been studies, and most indicate that there isn't a good correspondence

between the levels of anti-CCP antibodies and changes in disease

activity. Also, since not everyone produces anti-CCP, rheumatologists

would have to measure diseases activity in different ways for

different patients - not convenient.

http://www.ncbi.nlm.nih.gov/pubmed/21387224

Even though the anti-CCP antibodies are measured quantitatively and

the titers could fluctuate over time, you should just think of it as a

qualitative fact about yourself now. It is enough for the

rheumatologist to know that you produced anti-CCP antibodies in a

significant amount in the past. You are a woman, you are over 50, and

you are an anti-CCP antibody producer.

Not an MD

On Sat, Apr 2, 2011 at 10:32 AM, jjo193 <jjo193@...> wrote:

> All I can say is that I was diagnosed with PMR until the anti-CCP test came

back.  I asked the doctor if the change in diagnosis to RA was based just on the

anti-CCP and he said yes.  I also asked him if it could become negative later

and he said it didn't matter.  The levels of anti-CCP don't indicate how active

the disease is, so they don't keep on testing it.  This doesn't make sense to

me...if I am diagnosed based on one thing, how does it not matter later???  But

that is what he said.  Anti-CCP is relatively new and I don't have 100%

confidence in it....but maybe that is just wishful thinking on my part.

>

> Janice in GA