Re: RA factor question

[Guest guest]

As I understand is that we have high RA factors due to the increase in

inflammation in our body. That when mine is 279 I feel more pain and stiffness

as if my RA factor is 14. The numbers can get very high and changes all the

time. Last visit blood work showed mine was 279. Pain the last few months

have been kind of unbearable and my hands are the worse right now from a

lot of sewing that I have been doing until late night.

Irish

[Guest guest]

That's what I've always heard as well although i seem to be an oddball - my

highest number was 27 and that was the worst I have ever felt in my life. Once I

had rituxan infusions- mine became in remission - I think I'd have to dig a hole

out back & bury myself if I ever was over 50 much less over 200!

in SC

Sent from my iPhone

On Feb 11, 2010, at 2:04 PM, iafowl31260@... wrote:

As I understand is that we have high RA factors due to the increase in

inflammation in our body. That when mine is 279 I feel more pain and stiffness

as if my RA factor is 14. The numbers can get very high and changes all the

time. Last visit blood work showed mine was 279. Pain the last few months

have been kind of unbearable and my hands are the worse right now from a

lot of sewing that I have been doing until late night.

Irish

[Guest guest]

Thank you so much for your replies!

I hurt, yes, but then once had shin splints and when I finally went to the

doctor, he said I should be in tremendous pain since it was on the brink of

creating hairline fractures. I was merely uncomfortable. He put me on bed rest

and said there was a problem in my brain!  LOL

To compound current matters, is that currently I'm being checked for Lyme

Disease. I've never considered the possibility, through all these last years of

illness, discomfort, different diagnoses (from brain aneurysm to TMJ to Sick

Sinus Syndrome and a myriad infections) although I've always been healthy. Only

allergic reactions for years, but that's another story.

So, two weeks ago, a woman was talking to me about her daughter, my age, who has

been sick for a decade. She was finally diagnosed with Lyme Disease and is

getting treatment, and improving. She said all my symptoms sound like what her

daughter had. I started doing a little research and found a list of possible

symptoms. If you can mark 20 on the list, LD should be considered. I marked 48

at last count.

My doctor is checking and researching, but the tests for are notoriously

inaccurate, and it should be a clinical diagnosis.

I've found records of emails sent to friends, of " something " that bit me while

we were visiting in Prince County, Ontario, on Aug. 12, 2007. A week

later, weird raised bumps appeared on my body - I took pictures of the one on

my hand. From then on, things started going wrong.

 

I guess now I'm wondering if there is any relation between RA and LD. And if the

diagnosis of CFS I was given in Oct. 2008, could really also be part of the

possible LD. I hurt, and something is wrong, bouncing around my body, stabbing

then a knee, then a big toe, then a shoulder, then a groin ...

I've found this:

Q: Could the ELISA test for Lyme disease give a false-negative result in a

person with rheumatoid arthritis? If yes, would it make sense to do the Western

Blot test? Could Lyme disease have triggered the rheumatoid arthritis? Would

taking the antibiotics for Lyme disease be helpful at this late stage?

A: Rheumatoid arthritis is not a cause of a false-negative test for Lyme

disease. And Lyme disease is not a known trigger of rheumatoid arthritis. In

fact, there are no known triggers of rheumatoid arthritis. (The cause of the

disease is unknown.)

 

Sorry about babbling. I've also joined an LD support group, but am still reading

and trying to figure out what's going on, so might send this same message there

to see if anyone has some info. I was just really wondering about the RA factor

that the doctor called me in for. I'm waiting to hear from my rheumy. The GP

just called on my cell as I was finishing this to say he is still waiting for a

reply from another specialist about LD. So, I wait and see.  

Again, thank you for your replies, and good luck to us all with this miserable

disease where we " don't look sick " or hear " but you look so healthy! " as common

comments.

/ Meerkat

> ltdavis_jrdavis@... wrote:

>> Irish wrote:

As I understand is that we have high RA factors due to the increase in

inflammation in our body. That when mine is 279 I feel more pain and stiffness

as if my RA factor is 14. Irish

>>

     

[Guest guest]

,

My sister had Lyme disease, and it didn't amount to much, because it

was caught early and she was started on antibiotics right away. She

had been bitten by a tick and developed the typical target rash.

I understand that it can cause arthritis symptoms if not treated. This

could very well be what you have. I also understand that a positive RF

factor does not always indicate RA.

Please keep us posted on what your doctors decide.

Good luck!

Sue

On Feb 11, 2010, at 2:41 PM, Meerkat wrote:

>

>

> To compound current matters, is that currently I'm being checked for

> Lyme Disease. I've never considered the possibility, through all

> these last years of illness, discomfort, different diagnoses (from

> brain aneurysm to TMJ to Sick Sinus Syndrome and a myriad

> infections) although I've always been healthy. Only allergic

> reactions for years, but that's another story.

>

[Guest guest]

Hi, .

Rheumatoid factor (RF) is a protein, specifically an autoantibody.

The RF test is used to help establish a rheumatoid arthritis (RA)

diagnosis, but it alone cannot do so. RF is not specific to RA.

Further, Around 20% of RA patients never are RF-positive. RA is

largely a clinical diagnosis.

RF can be positive in Lyme disease and in many other situations. It

can even be produced by seemingly healthy individuals.

http://www.medicinenet.com/rheumatoid_factor/article.htm

http://www.ncbi.nlm.nih.gov/pubmed/15881948

Some rheumatologists use RF to monitor disease activity. On the other

hand, many rheumatologists do not use RF to monitor disease activity

in RA and, obviously, cannot do so for those RA patients who are

RF-negative. They usually use ESR or CRP and swollen and tender joint

counts to estimate disease activity.

If RA is suspected but the diagnosis is not solid, an anti-CCP test

can help. Anti-CCP antibodies are more specific to RA than RF.

Unfortunately, anti-CCP is not a perfect test either, but it is very

good.

A patient's history and clinical presentation are extremely important

in making the correct diagnosis.

Not an MD

On Thu, Feb 11, 2010 at 1:41 PM, Meerkat <meerkat01@...> wrote:

> Thank you so much for your replies!

>

> I hurt, yes, but then once had shin splints and when I finally went to the

doctor, he said I should be in tremendous pain since it was on the brink of

creating hairline fractures. I was merely uncomfortable. He put me on bed rest

and said there was a problem in my brain!  LOL

>

> To compound current matters, is that currently I'm being checked for Lyme

Disease. I've never considered the possibility, through all these last years of

illness, discomfort, different diagnoses (from brain aneurysm to TMJ to Sick

Sinus Syndrome and a myriad infections) although I've always been healthy. Only

allergic reactions for years, but that's another story.

>

> So, two weeks ago, a woman was talking to me about her daughter, my age, who

has been sick for a decade. She was finally diagnosed with Lyme Disease and is

getting treatment, and improving. She said all my symptoms sound like what her

daughter had. I started doing a little research and found a list of possible

symptoms. If you can mark 20 on the list, LD should be considered. I marked 48

at last count.

>

> My doctor is checking and researching, but the tests for are notoriously

inaccurate, and it should be a clinical diagnosis.

> I've found records of emails sent to friends, of " something " that bit me while

we were visiting in Prince County, Ontario, on Aug. 12, 2007. A week

later, weird raised bumps appeared on my body - I took pictures of the one on

my hand. From then on, things started going wrong.

>

> I guess now I'm wondering if there is any relation between RA and LD. And if

the diagnosis of CFS I was given in Oct. 2008, could really also be part of the

possible LD. I hurt, and something is wrong, bouncing around my body, stabbing

then a knee, then a big toe, then a shoulder, then a groin ...

>

> I've found this:

> Q: Could the ELISA test for Lyme disease give a false-negative result in a

person with rheumatoid arthritis? If yes, would it make sense to do the Western

Blot test? Could Lyme disease have triggered the rheumatoid arthritis? Would

taking the antibiotics for Lyme disease be helpful at this late stage?

> A: Rheumatoid arthritis is not a cause of a false-negative test for Lyme

disease. And Lyme disease is not a known trigger of rheumatoid arthritis. In

fact, there are no known triggers of rheumatoid arthritis. (The cause of the

disease is unknown.)

>

> Sorry about babbling. I've also joined an LD support group, but am still

reading and trying to figure out what's going on, so might send this same

message there to see if anyone has some info. I was just really wondering about

the RA factor that the doctor called me in for. I'm waiting to hear from my

rheumy. The GP just called on my cell as I was finishing this to say he is still

waiting for a reply from another specialist about LD. So, I wait and see.

>

> Again, thank you for your replies, and good luck to us all with this miserable

disease where we " don't look sick " or hear " but you look so healthy! " as common

comments.

>

> / Meerkat

[Guest guest]

-This is second attempt to reply. I hit the enter key instead of cap key

earlier. Anyway, I am an avid sewer. I found out I had RA because I had so

much pain doing hand manuvers with sewing and knitting. I was diagnosed in 2004

RA factor 449. Have you found anything to relieve pain in arms and hads with

sewing? I hold off stopping because I want to finish projects so bad. I would

love to know if you have any tricks.

Dale Ellen

>

[Guest guest]

Hi - I'm so sorry to hear you are dealing with so much. Is Plaquenil the

only medication your Rheumy has you on besides the Tylenol Arthritis? IMHO, it

sounds like its time for a new Rheumy. From everything I've learned, your RA

should have been treated more aggressively by now. You need a Rheumy who will

not only read and act on the tests you have done, but listen to you and help

when are telling them about your pain.

I was diagnosed 4 years ago and I am taking MTX injection weekly, Enbrel

injection weekly, Sulfasalazine twice daily and prednisone as needed for flares.

Keep us posted. I pray there is another Rheumy close by that will treat you

better than this one is.....

Doreen

>

> Good afternoon, everyone,

>

> I hope someone has an answer because I really don't know what to

> make of this.

> Long story short. I was diagnosed in 2005, through elevated RA

> factor in my blood. I never really asked what the count was, but

> have been with a rheumatologist since then.

>

> Since 2007 I've had many more health problems, lots of different

> diagnoses and tests, emergency MRI, infections every month, and

> more.

>

> Last week my doctor sent me for more blood tests, including RA

> factor. He called me back and I managed to see him today. He said my

> " RA factor was off the charts " at 229.

> What does that mean?

>  

> I saw my rheumatologist on Jan. 19, told her about pain in different

> places, and she seemed a bit irritated with me because she could

> manipulate my joints without protest from me. (I have a high pain

> threshold.) She didn't adjust my meds (Plaquenil 2x a day). I'm also

> just on Tylenol Arthritis, because I have a stomach ulcer and have

> to be careful.

>  

> Thank you for reading, and for any responses.

> Meerkat /

[Guest guest]

,

There are many drugs, both narcotic and non narcotic, that can be used to

control pain.  Why is your doc who knows you have RA, checking RF

repeatedly?  Did he perform a sed rate or any other lab work?   Obviously

the drug that you are on isnt working.  I understand that your doc might be

hesitant to prescribe biologics etc due to the frequent infections.  However,

if the disease process is not controlled it can and will damage your joints.  A

heart to heart talk with your Dr is necessary.  Ask your doc what his long term

plan with you is..

Deb RN

 Debra

________________________________

From: Mimi <mimi212@...>

Sent: Fri, February 12, 2010 9:08:20 AM

Subject: [ ] Re: RA factor question

 

Hi - I'm so sorry to hear you are dealing with so much. Is Plaquenil the

only medication your Rheumy has you on besides the Tylenol Arthritis? IMHO, it

sounds like its time for a new Rheumy. From everything I've learned, your RA

should have been treated more aggressively by now. You need a Rheumy who will

not only read and act on the tests you have done, but listen to you and help

when are telling them about your pain.

I was diagnosed 4 years ago and I am taking MTX injection weekly, Enbrel

injection weekly, Sulfasalazine twice daily and prednisone as needed for flares.

Keep us posted. I pray there is another Rheumy close by that will treat you

better than this one is.....

Doreen

[Guest guest]

> To compound current matters, is that currently I'm being checked for Lyme

Disease. I've never considered the possibility, through all these last years of

illness, discomfort, different diagnoses (from brain aneurysm to TMJ to Sick

Sinus Syndrome and a myriad infections) although I've always been healthy. Only

allergic reactions for years, but that's another story.

It is true that lyme disease is expert at hiding while doing extensive damage. I

have an acquaintance who lives in Canada and her daughter become extremely ill,

almost catatonic. Canadian doctors refused to acknowledge that it could be lyme

disease because they live on the west coast and lyme was only allowed to be a

disease on the east coast. She ended up taking her daughter to specialists in

Seattle (on her own dime) for testing and finally treatment. When they finally

started treating her with antibiotics her daughter came out of her catatonic

state. Every symptom and all her reactions to the medication are consistent with

lyme disease. It is truly an awful disease to cope with. Her daughter likely has

permanent neurological damage from it. If you suspect you have lyme disease, you

need to fight as hard as you can for a correct diagnosis and treatment.

J.

[Guest guest]

>

>

>

> -This is second attempt to reply. I hit the enter key instead of cap key

earlier. Anyway, I am an avid sewer. I found out I had RA because I had so

much pain doing hand manuvers with sewing and knitting. I was diagnosed in 2004

RA factor 449. Have you found anything to relieve pain in arms and hads with

sewing? I hold off stopping because I want to finish projects so bad. I would

love to know if you have any tricks.

>

vitamin D. My doctor put me on plaquenil and vitamin D when I was diagnosed, but

the pain in my hands didn't abate at all. Later she said to double the dosage of

vitamin D, and within about 4 days the pain in my hands was gone.

J.