I was back to John Hopkins. I am getting progressively weaker. Mestinon and IVIG help, but there is still a progressive trend downward. Doctors have always said I have more than 1 autoimmune issue. My sed rate is now over 100. I am in a lot of pain and the livedo reticularis rash now covers almost my entire body. Anyone else have a high sed rate like this?
Thanks
kathie

Kathie, What drugs are you on?

I'm sorry if I can't remember this, but have you been diagnosed with lupus?

If you have it and are in a flare right now, you need to see someone right away. Especially due to the kidney issue!

The only time I've had a sed rate over 100 (104) was when I had C. diff. Anything that high is serious, especially if your normal is no where near that high.

I don't want to scare you (or do I?), but you need to have someone take a check of your basic chemistry, vitals, urinalysis, etc. right away.

What's your temp right now? That doesn't necessarily correlate to ESR, but at least keep an eye on it. Do you have a BP cuff or an oximeter?

I hope you'll be okay. Don't let the docs say that it's no big deal.

Annie

Hi Annie, I have not been diagnosed with Lupus. ANA was negative, it was done while I was on steroids. I am finally off steroids after 2.5 years. I am on mestinon, cellcept & IVIG. They are going to switch me to Imuran, cellcept is not working.

Except for c reactive protein and sed rate, my blood work is the most normal it has been in 2 years. The anemia is finally gone. WBc show no infection. BUN and creatinin normal. No fever, no signs of any infections. I think it may be Lupus or dermatomyositis. My weakness and pain have gotten progressive worse, as well as the rashes.

thanks
kathie

Have they ever checked for polymyositis?

WOOHOO for finally getting off of steroids. What a task that is, eh?

Do you ever have a rash (not livedo) after being in the sun? I would still highly recommend seeing a dermatologist at a university who is experienced with lupus. Even lupus patients without a current rash have tested positive to a biopsy with immunofluorescence (because of past rashes).

At least consider consulting with one (or have you?).

Did they do a urinalysis at the time of the sed rate draw? Since lupus is so "uppity" and can change on a dime, it's important to have the tests when someone is having symptoms (or other positive test results).

Since you are immunosuppressed, you might have an infection. When I had C. diff, my WBC was completely normal. I'm betting it's inflammatory, though.

This is my favorite article on ESR. If it were me, I'd want more thinking or testing to figure out why your ESR is so high!

http://www.aafp.org/afp/1999/1001/p1443.html

Being sick sucks!

Annie

I am going to look for a rheumotologist at John Hopkins and see if I can get an appointment. My urinalysis have been off for a couple of years - WBC, RBC, protein and no bacteria.

I am pretty sure with the rashes it is Lupus or dermatomyositis.

Too many doctors and not enough answers. I am sticking with John Hopkins.

thanks
kathie