I've been in a sort of limbo the last few weeks, waiting for a follow up to my first rheumy visit.
Good to hear from you; I was wondering how you were. Like you I didn't
want the PMR dx, but the elimination of all the other horrible stuff is a
great relief! I am very glad for you in that sense.
I am beginning to think (as I guess some of those less new to this already
have said) that the docs really are just learning abut PMR and they don't
always know even as much as we do from sharing info. Remember it is
the PRACTICE of medicine... not always known, sometimes practicing till
you get it right. If the pred is helping more than hurting right now, give it
a while.
Try to hang in - stay in touch with us - and feel better soon!
Thinking about you
pgrHi Chico, I too do not have the typical results from blood tests. Sure do
have the miserable symptoms though! My Rheumy says that is not too
uncommon. My response (dramatic) to 20 mg of Pred was what comfirmed
his diagnosis. Other possiblities have been ruled out, thank heaven. Twice I
have been down to 10 mg and could hardly function so I now am at 15, and
feeling pretty good. I am carefully considering lowering to 14, perhaps by
the end of this week. Feeling pretty good is a relative term, meaning more
wretched than miserable! Take care, hang in there, there is an end to all of
this, so I have been told!
I find it interesting that the treatment is not based on your ESR or CRP level anyway, it's based on your symptoms. So it seems that it is logical to me for there to be exceptions. As long as the Pred works!
Sorry you're here but "Welcome Predheads!"
Kathy
Thanks all. Yes, the last couple of month since my doctor said to me "I think you have polymyalgia", after listening to my litany of pain, stiffness, fatigue and debility, have been very interesting, if stressful. I have read literally hundreds of articles on the subject of PMR and probably all the available literature on PMR with normal ESR (and there is actually quite a lot, some really extensive studies have been done on it). And I also am quite surprised at how little "they" actually know about PMR. I also kept coming up against the age question. Even though all the literature says "over 50", they also mostly insist it's very rare in the 50s. So what are all us folk who are in our 50s? chopped liver? Why don't they just change the criteria to "over 60" if they feel like that?! I did read a number of times in all the literature that monitoring ESR is not a reliable way to monitor improvement of PMR, better to monitor response to lowering doses of pred. Oh, and I also read masses on lab tests, blood tests etc and again it's amazing how many of these are a tad dodgy and can mean all sorts of different things, or mean nothing at all! I'll do another post about that, cos I'd be interested to know what other positive blood tests some of you have had, apart from the ESR. I am wondering if we need to do our own research on the age thing
Chico,
I had lots of blood tests to rule out things, but the only abnormal were ESR and Alk/Phos, they were both high. I think I'll ask the doctor for a CRP test and see what she says next time.
Good nite all!
Kathy
Hi
My rheumi just called and told me my sed rate was up. It's in the seventy's. She is putting me on Plaquinil along with my pred. Has any of you had to do this. What is a normal sed rate? My mother in law used to have this little plaque on her wall and I couldn't quite get it but Lord do I now it was "The hurrier I gothe behinder I get". It seems sometimes the light gets dimmer and dimmer at the end of the tunnel and reaching it is almost unattainable. We will still keep plodding along. If any of you have had to take plaquinil, what are the side effects? Things could be worse. None of these diseases I have gotten in the last year or found out about, is going to kill me so that is something to look forward to.lol I would appreciate any info.
AnnaAnna,
I am sorry for the news about your sed rate. Has your doctor checked CRP? I
have not had to deal with Plaquenil. The diagnostic level for PMR is a sed
rate of 40. My high was 57, but many on this forum hav been much higher.
My last was 12 and my dr. said "normal" is 8-I think around 16- but can't
remember. The point is yours is high & I hope the new med works and you
start feeling better! I am glad the dr is taking action!
Take care of yourself!
pgrAnna,
That is a disappointment, for sure. Maybe you are just having a flare? Normal sed rate according to most of the articles is 30 or less for women, although I think it does change as one gets older. Then the rule of thumb for women over 50 is to take their age, add 10 and divide by 2 to get sed rate. Yours is still high. I took plaquenil in place of pred. for 6 months and then quit altogether, having just gotten "tired" of all the medication. I had no side effects in that time. You do, however, have to have your eyes checked every 6-12 months. That is mandatory, as plaquenil can damage the retina. And when you do, make sure you get a referral to an opthalmologist to assure that it is covered by your insurance if you don't otherwise have eye care coverage (we don't). I didn't know that, until when I went in for the exam, my regular eye dr. told me to get a referral next time, so the insurance would pay and not me. Nice guy.
hi Anna, I started plaquenil two days ago for RA with no problems whatsoever. I did have the retina eye tests before I started , and will have checks every 6 months. It takes about a month or 6 weeks to show any results they say. I hope you do well on it too.
Hi Teeger,
I'm sorry to hear your sed rate is up.
I looked at the copy of my blood tests and it says the normal esr range for females is 0-25. Anyway that's what it says on my printout. The computer rated me on the high side on all the tests that exceeded the top range #.
Funny how we all are diagnosed with the same thing and have been given different answers! Go figure?
Hang in there and keep us up to date.
Kathy
Kathy,
I have high Alkaline Phosphates. And somewhere I read that people with high Alkaline Phosphates can have PMR as it seems it is one of the similarities. I wished I would have saved that site, but I didn't. I don't know what is considered overly high. Mine are up something like 30 points or so. Mary
Hi Mary,
My Alk/Phos was also high. Interesting coincidence!? My doc wrote a note next to it "bone turnover" whatever that means?
If you remember the site, let me know?
Take care, Kathy
Most of the articles I have read about blood tests and PRM mention elevated Alk/Phos (part of the liver function test) as being a common finding in PMR.