Re: MY joint/muscle/tenderpoint pain and treatment

[Guest guest]

I am very curious about Sed rates and how people feel when they are elevated vs

normal. I have been feeling terrible and my sed rate has been going up - it's

now 60. I hurt all over and have terrible fatigue. I don't have a diagnosis

except " polyimmune/inflammatory syndrome " . I don't have joint or skin

involvement, but apparently something is attacking my blood vessels, especially

in my head. I have elevated sed rate and elevated c-reactive protein. My

rheumie has prescribed endbrel which I hope will bring down the inflammation and

make me feel better. My observation is that the higher my sed rate is, worse I

feel, too. I know that it's a very non-specific measurement of the amount of

inflammatory activity in your body, but I would like to know what range yours

has been when you were flaring.

claire

[ ] MY joint/muscle/tenderpoint pain and treatment

I have been with the same wonderful rheumatologist for over ten years now.

He measures my sed rate in his own machine with in twenty minutes of drawing

my

blood himself, so we know where we are right away.

[Guest guest]

-Hi ,

Thank You so much for sharing your and your Docs' treatment

strategies. It is helpful to me to hear about it. Your Rheumie does

sound like a wonderful Doc. Maybe I need to move to one of the

coasts where there are many Docs available to choose from.

All the Best,

Marti

[Guest guest]

In a message dated 6/27/2003 11:59:27 AM Eastern Standard Time, CTNATIVE writes:

> Although the disease process of the PA

> unfortunately has gotten worse, at least when I am in a remission, it is a

complete

> remission now--and I had never had complete freedom from pain before at any

> time while being treated just for FM.

>

> I hope this kind of sheds some light on how I am treated

> Randi,

>

> S/

> group founder

How often are you in remission, and how long do the remission last? What meds

have you been on that have put you into remission?

[Guest guest]

Hey!

I'm curious about sed rates and flare ups too. My rheumy doesn't check mine

often. Do they just assume if you're having a flare that your sed rate is up????

My internist is checking it now with all this other stuff I have going on, so

we'll see what it looks like. I know when I first was diagnosed, he said my sed

rate was 4 times the normal, but he's never said anything about it since then.

Jackie

[Guest guest]

Dear ,

This sounds like what I had about 11 years ago. I spent 6 months on a merry go

round trying to get a diagnosis, and was finally diagnosed with polymialgia

rheumatica (PMR). My doctor immediately put me on prednisone and I was weaned

off it again about 6 months later, when my SED rate was normal and I felt good

again. There are times I think my current PA is definitely related to that. I'm

not saying this is what you have - mention the possibility to your doctor - but

I had the same symptoms.

e

[Guest guest]

Unfortunately, when I weaned of prednisone, I felt much worse and my sed rate

went up to 60. Yikes! I wonder if polymyalgia rheumatica can attack the head?

claire

[Guest guest]

that is where my pain was. It wasn't a normal headache -hard to describe,

but I felt lousy, had a slight temperature, was tired, and my head hurt just to

move.

adriane

[Guest guest]

Wow. I will ask my rheumie! And I will read up on PR.

claire