Re: Re: [ - rheumatoid disease

[Guest guest]

Judith, that's a tough one.

First of all, if you are questioning your RA diagnosis, you should talk

it over with your rheumatologist. He should be able to explain how he

decided that it is RA and put your fears to rest. He must be pretty

certain about your diagnosis if he is about to start you on leflunomide.

It is possible that you have both RA and fibromyalgia. What does your

current rheumatologist say about that possibility?

A person who has never had any sort of profound swelling in joints

typically affected by RA, no significant stiffness, no positive labs

(RF, CCP, ESR, or CRP), and no X-ray or other imaging studies that show

changes consistent with RA is not likely to have RA. That said, with

DMARDs, many of these signs, symptoms, and labs may start to fade,

disappear, or return to normal, but, if they were never there in the

first place, it would be hard to justify an RA diagnosis. Yet, it

happens.

Or someone who has a slightly positive RF and polyarthritis may be told

that he or she has RA. That happened to me. One physician officially

diagnosed it in my record, another only told me that she believed it was

RA. I don't think I have RA. Rheumatologists I have seen since have

not been able to confirm RA, just the inflammatory polyarthritis along

with a lot of interesting guesses, LOL. I do have lab results and other

symptoms that make it likely that I have some sort of connective tissue

disease, but it's probably not RA.

I wish it were true that you don't have RA. Please ask your doctor for

some reassurance about your diagnosis. If it truly is RA, DMARDs are the

way to go.

Good luck and please let us know what happens.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Dennis - rheumatoid disease

>

>

> > I agree with you, Dennis. Rheumatoid arthritis is so much more than

> > arthritis that " rheumatoid disease " is a better description. It's a

> > serious systemic disease.

> >

> > I also believe that it's true that there are a lot of people who

have

> > been told they have RA when in fact they don't have it.

> >

> > So, is your birthday around September 8th?

> >

> >

> >

[Guest guest]

Judith, that's a tough one.

First of all, if you are questioning your RA diagnosis, you should talk

it over with your rheumatologist. He should be able to explain how he

decided that it is RA and put your fears to rest. He must be pretty

certain about your diagnosis if he is about to start you on leflunomide.

It is possible that you have both RA and fibromyalgia. What does your

current rheumatologist say about that possibility?

A person who has never had any sort of profound swelling in joints

typically affected by RA, no significant stiffness, no positive labs

(RF, CCP, ESR, or CRP), and no X-ray or other imaging studies that show

changes consistent with RA is not likely to have RA. That said, with

DMARDs, many of these signs, symptoms, and labs may start to fade,

disappear, or return to normal, but, if they were never there in the

first place, it would be hard to justify an RA diagnosis. Yet, it

happens.

Or someone who has a slightly positive RF and polyarthritis may be told

that he or she has RA. That happened to me. One physician officially

diagnosed it in my record, another only told me that she believed it was

RA. I don't think I have RA. Rheumatologists I have seen since have

not been able to confirm RA, just the inflammatory polyarthritis along

with a lot of interesting guesses, LOL. I do have lab results and other

symptoms that make it likely that I have some sort of connective tissue

disease, but it's probably not RA.

I wish it were true that you don't have RA. Please ask your doctor for

some reassurance about your diagnosis. If it truly is RA, DMARDs are the

way to go.

Good luck and please let us know what happens.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Dennis - rheumatoid disease

>

>

> > I agree with you, Dennis. Rheumatoid arthritis is so much more than

> > arthritis that " rheumatoid disease " is a better description. It's a

> > serious systemic disease.

> >

> > I also believe that it's true that there are a lot of people who

have

> > been told they have RA when in fact they don't have it.

> >

> > So, is your birthday around September 8th?

> >

> >

> >

[Guest guest]

Hi

No I don't think my rheumatologist has made a mistake at all I have

responded to all the drugs given to me specifically for RA. It was just

that when I had a locum consultant Rheumatologist a couple of years ago he

brought up the fact that he thought I did not have RA but Fibromyalgia.

Anyway my current rheumatologist says there is no question about it, it is

RA. So my question really was I wonder how many people do get wrongly

diagnosed. My consultant said that it is hard to diagnose and is done on

bloodworks and symptoms, my current consultant believes and I think he is

right, that I have had it for a lot longer than I have been diagnosed with.

For the past 10 years I have known the problems I had with my feet were not

plantar faciitiss as I was originally told, my joint stiffness was not just

because I was getting older and going through the menopause neither was it

normal to have hot tender swollen joints in my feet and feel constantly

exhausted. He told me that it can take time to get the correct diagnosis..

Anyway today I saw the rheumatology nurses and they explained all about

Leflunomide to me and I am going to give it a go, hopefully I won't have too

many side effects and be able to take it. I must admit reading all your

posts about battling with insurance companies for your medication must be

nightmare in general that is something we don't have to do in the UK.

Fingers crossed for a good response to Leflunomide.

Judith

[ ] Re: [ - rheumatoid disease

>

>

> > Hi

> >

> > How do you know if you are one those people who have been wrongly

> diagnosed.

> > I have the Rheumatoid Factor in my blood and my rheumatologist used a

> > steroid injection as a diagnostic tool, apparently as my condition

> improved

> > with this and along with the morning stiffness, joint pain it was felt

> I

> > have RA. Yet a couple of years ago one rheumatologist said I had

> > Fibromyalgia and not RA. I don't seem to get much swelling of my

> joints yet

> > they feel hot, tender and inflamed, I also have terrible fatigue. I

> am

> > waiting to try Leflunomide and am seeing the rheumatologist nurses on

> > Tuesday to go over my treatment and discuss my worries and fears. I'd

> love

> > to think that someone had made a mistake and I really didn't have it.

> >

> > Judith

[Guest guest]

Hi

No I don't think my rheumatologist has made a mistake at all I have

responded to all the drugs given to me specifically for RA. It was just

that when I had a locum consultant Rheumatologist a couple of years ago he

brought up the fact that he thought I did not have RA but Fibromyalgia.

Anyway my current rheumatologist says there is no question about it, it is

RA. So my question really was I wonder how many people do get wrongly

diagnosed. My consultant said that it is hard to diagnose and is done on

bloodworks and symptoms, my current consultant believes and I think he is

right, that I have had it for a lot longer than I have been diagnosed with.

For the past 10 years I have known the problems I had with my feet were not

plantar faciitiss as I was originally told, my joint stiffness was not just

because I was getting older and going through the menopause neither was it

normal to have hot tender swollen joints in my feet and feel constantly

exhausted. He told me that it can take time to get the correct diagnosis..

Anyway today I saw the rheumatology nurses and they explained all about

Leflunomide to me and I am going to give it a go, hopefully I won't have too

many side effects and be able to take it. I must admit reading all your

posts about battling with insurance companies for your medication must be

nightmare in general that is something we don't have to do in the UK.

Fingers crossed for a good response to Leflunomide.

Judith

[ ] Re: [ - rheumatoid disease

>

>

> > Hi

> >

> > How do you know if you are one those people who have been wrongly

> diagnosed.

> > I have the Rheumatoid Factor in my blood and my rheumatologist used a

> > steroid injection as a diagnostic tool, apparently as my condition

> improved

> > with this and along with the morning stiffness, joint pain it was felt

> I

> > have RA. Yet a couple of years ago one rheumatologist said I had

> > Fibromyalgia and not RA. I don't seem to get much swelling of my

> joints yet

> > they feel hot, tender and inflamed, I also have terrible fatigue. I

> am

> > waiting to try Leflunomide and am seeing the rheumatologist nurses on

> > Tuesday to go over my treatment and discuss my worries and fears. I'd

> love

> > to think that someone had made a mistake and I really didn't have it.

> >

> > Judith

[Guest guest]

OK, Judith. That's good that you aren't doubting your diagnosis. I wish

you the best of luck with leflunomide. Terri has had an amazing response

to it, and I hope you will be as fortunate as she.

Yes, I'd say that often it takes awhile, possibly years, before a person

gets the right diagnosis. And that can be due to several factors,

including having less than spectacular healthcare providers. Other times

though, RA is obvious from the start.

There are lots of reasons for inflammatory arthritis. So many of the

symptoms are common to a number of diseases that pinpointing what it is

can be quite difficult or take much time. Some doctors may choose to

label some patients as having undifferentiated connective tissue disease

(UCTD), and such individuals may retain that diagnosis indefinitely.

Those patients just don't fit neatly into any of the available

classifications.

Others can have arthritis that may look like RA, but it really is due to

an infection such as parvovirus or Lyme disease, for example, and is,

fortunately, transitory rather than chronic. My sister developed

terrible problems after a tick bite, was treated correctly, and is now

fine. Luckily for her, she noticed the tick and knew what to suspect

when her symptoms began.

Hepatitis C can be responsible for arthritis and labs that may suggest

RA, and it is also possible for Hepatitis C and RA to occur together. If

both diseases are present, treatment options must be considered very

carefully.

We heard a few interesting stories here a couple of years ago from a

person who wrote about her friend who was diagnosed with RA. From

everything that was known and said, it was probably more likely that her

friend had tophaceous gout, not RA with rheumatoid nodules.

It is possible for an individual to have more than one disease or an

overlap syndrome. That sort of situation presents physicians with a very

difficult problem with regard to diagnosis and, particularly, monitoring

and treatment.

I think I'll stop now, since I could bore you to tears with a few more

pages on this topic.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: [ - rheumatoid disease

>

> Hi

>

> No I don't think my rheumatologist has made a mistake at all I have

> responded to all the drugs given to me specifically for RA. It was

just

> that when I had a locum consultant Rheumatologist a couple of years

ago he

> brought up the fact that he thought I did not have RA but

Fibromyalgia.

> Anyway my current rheumatologist says there is no question about it,

it is

> RA. So my question really was I wonder how many people do get wrongly

> diagnosed. My consultant said that it is hard to diagnose and is done

on

> bloodworks and symptoms, my current consultant believes and I think he

is

> right, that I have had it for a lot longer than I have been diagnosed

with.

> For the past 10 years I have known the problems I had with my feet

were not

> plantar faciitiss as I was originally told, my joint stiffness was not

just

> because I was getting older and going through the menopause neither

was it

> normal to have hot tender swollen joints in my feet and feel

constantly

> exhausted. He told me that it can take time to get the correct

diagnosis..

>

> Anyway today I saw the rheumatology nurses and they explained all

about

> Leflunomide to me and I am going to give it a go, hopefully I won't

have too

> many side effects and be able to take it. I must admit reading all

your

> posts about battling with insurance companies for your medication must

be

> nightmare in general that is something we don't have to do in the UK.

> Fingers crossed for a good response to Leflunomide.

>

> Judith

[Guest guest]

OK, Judith. That's good that you aren't doubting your diagnosis. I wish

you the best of luck with leflunomide. Terri has had an amazing response

to it, and I hope you will be as fortunate as she.

Yes, I'd say that often it takes awhile, possibly years, before a person

gets the right diagnosis. And that can be due to several factors,

including having less than spectacular healthcare providers. Other times

though, RA is obvious from the start.

There are lots of reasons for inflammatory arthritis. So many of the

symptoms are common to a number of diseases that pinpointing what it is

can be quite difficult or take much time. Some doctors may choose to

label some patients as having undifferentiated connective tissue disease

(UCTD), and such individuals may retain that diagnosis indefinitely.

Those patients just don't fit neatly into any of the available

classifications.

Others can have arthritis that may look like RA, but it really is due to

an infection such as parvovirus or Lyme disease, for example, and is,

fortunately, transitory rather than chronic. My sister developed

terrible problems after a tick bite, was treated correctly, and is now

fine. Luckily for her, she noticed the tick and knew what to suspect

when her symptoms began.

Hepatitis C can be responsible for arthritis and labs that may suggest

RA, and it is also possible for Hepatitis C and RA to occur together. If

both diseases are present, treatment options must be considered very

carefully.

We heard a few interesting stories here a couple of years ago from a

person who wrote about her friend who was diagnosed with RA. From

everything that was known and said, it was probably more likely that her

friend had tophaceous gout, not RA with rheumatoid nodules.

It is possible for an individual to have more than one disease or an

overlap syndrome. That sort of situation presents physicians with a very

difficult problem with regard to diagnosis and, particularly, monitoring

and treatment.

I think I'll stop now, since I could bore you to tears with a few more

pages on this topic.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re: [ - rheumatoid disease

>

> Hi

>

> No I don't think my rheumatologist has made a mistake at all I have

> responded to all the drugs given to me specifically for RA. It was

just

> that when I had a locum consultant Rheumatologist a couple of years

ago he

> brought up the fact that he thought I did not have RA but

Fibromyalgia.

> Anyway my current rheumatologist says there is no question about it,

it is

> RA. So my question really was I wonder how many people do get wrongly

> diagnosed. My consultant said that it is hard to diagnose and is done

on

> bloodworks and symptoms, my current consultant believes and I think he

is

> right, that I have had it for a lot longer than I have been diagnosed

with.

> For the past 10 years I have known the problems I had with my feet

were not

> plantar faciitiss as I was originally told, my joint stiffness was not

just

> because I was getting older and going through the menopause neither

was it

> normal to have hot tender swollen joints in my feet and feel

constantly

> exhausted. He told me that it can take time to get the correct

diagnosis..

>

> Anyway today I saw the rheumatology nurses and they explained all

about

> Leflunomide to me and I am going to give it a go, hopefully I won't

have too

> many side effects and be able to take it. I must admit reading all

your

> posts about battling with insurance companies for your medication must

be

> nightmare in general that is something we don't have to do in the UK.

> Fingers crossed for a good response to Leflunomide.

>

> Judith