I was diagnosed with PMR about 4 1/2 years ago at age 52...
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I was diagnosed with PMR about 4 1/2 years ago at age 52 after experiencing great pain for several months. When it first hit me, I thought it was a flu, and I did not go downstairs for 3 days, because I hurt so badly. At that time my sed rate was 40. I was put on a trial dose of prednisone for 2 weeks. After 4 days I felt normal. It was wonderful. My primary care provider then sent me to a rheumatologist who told me "you're not old enough, your sed rate is not high enough, and I don't want you to take prednisone", even after I told him that prednisone was the only thing that made me feel normal. I went home almost in tears. Our insurance changed, and I suffered for another year before I was sent to a rheumatologist. He agreed with the PMR diagnosis and put me back on prednisone. Insurance changed again, and another rheumatologist had me on the prednisone for a while (1 year total) and then switched me to hydroxychlorquine, as I had gained 36 pounds on prednisone!! That didn't seem to work as well; my sed rate was 42 when I quit that in April this year. I have yet another new rheumatologist, who is a dear, and agreed to let me stay off prednisone for a while so I could try to lose some weight. Sed rate went from 49 to now at 62. He is willing to give me a little more time to try to lose some more weight, bless his heart, but will push to restart the prednisone by November if not sooner. I will go for another blood test this month and then probably go back on prednisone then. I am tired of hurting, and 18 pounds weight loss is okay. Am hoping now that I'm on a better diet, and know how prednisone affects me, perhaps I'll be able to even lose a few more pounds. My husband is a dear, too, and says it is more important for me not to hurt than to be thin. :-) For the person who was asking what sed rate should be for someone 56, my rheumy said for the over 50 crowd to add 10 to your age and divide by 2, so sed rate for age 56 should be 33. For the person who is concerned about GCA, as long as you know what the symptoms are and are aware of it if it should happen, I wouldn't worry. They say quick treatment will prevent blindness.
[i:9b8008fef0]This message was automatically imported from the original Patient Experience[/i:9b8008fef0]
0 likes, 9 replies
RickF
Posted
I know this is a dated post, but I wanted to share what I found to be the formula for normal sed rate or ESR. R. is correct if the patient is female, but a bit different for males. See image below:
mrs_k
Posted
But I think that must be out of date.
What I have discovered is the the Sed rate norm can be different from PCT to PCT.
Ours works on have your age, and then it depends on height, weight et al.
My GP and Rheumy settle for different rates ie my GP wants is below 27 and my Rheumy can live with 30 and below.
Remember, PMR-GCA has no known cause or cure - so its guess estimate and best practice time.
I do so hope somebody comes along and tells me I am completely wrong.
MrsO-UK_Surrey
Posted
I was told by my rheumatologist that normal ESR is between 1-20 (no mention of age being taken into account) and normal CRP is 0 to 10 (by rheumatologist) and 0-5 (by Nurse Specialist). So shall we just throw all the numbers in a ring and pick which one we want? At least those of us whose blood is sensitive to PMR/GCA have a guideline to work on unlike those poor people whose inflammation markers show no increase at all.
MrsO
EileenH
Posted
Hi Rick: My inflammation markers are absolutely normal - my ESR is 4 which by any standard you have to agree is low. I had had the signs and symptoms of PMR for about 5 years since my early 50s but only had a name put to it about 9 months ago and I responded to a 15 mg dose of prednisolone within 24 hours. After some disagreement on the part of a rheumatologist (who thinks it is something far more horrid and wants to put me on an even more unpleasant drug), with the blessing of my GP I have been on steroids since last July and am down to 14mg every other day which generally leaves me reasonably able (I manage to ski 2 or 3 times a week). Today I feel awful - there is a serious weather front passing through and it is raining the proverbial cats and dogs!
In response to your other post but associated here too - like everything else in PMR, exercise is something you have to go by feel with. I can have a day where I suddenly feel fatigued or have pain again after a small amount of exercise. The only answer is to rest up a bit and recover. You eventually learn how to balance it out. On the other hand - going by feel means not having to go to the doctor and have bloods done! Lots cheaper and far less time consuming!
And the side-effects of steroids vary from person to person - I have almost none. And as far as the rate of reduction is concerned: it needs to be in small decrements each time but it may be possible to go down quite quickly initially. You say you are retired - read all of this forum as your bedtime reading and you'll find answers to almost any question you can think of! MrsK has posted a few points referring to decreasing the dose. Any other questions - come by and ask,
Enjoy your homework,
EileenH
RickF
Posted
MrsO-UK_Surrey
Posted
EileenH
Posted
And as I said - in some ways not having elevated inflammatory markers is handy as it saves having to have bloods taken and progression according to symptoms is not quite so rigid.
The weather here is very springlike - a bit of new snow last night but in the upper teens in the valley in the afternoon and lovely for sunbathing at the cafe on the edge of the piste while the grandchildren were sliding down the snow. Their trousers were very wet!!!!
Eileen
MrsO-UK_Surrey
Posted
Yes, we do so have to consider our non-material riches - and even suffering with this wretched PMR and GCA, it could so easily be worse, couldn't it. As for friends, I don't know where I would have been without them when bed-ridden for months before diagnosis, especially whilst hubby was at work. And as for our \"virtual\" friends on this forum, we are indeed very blessed.
That's a very picturesque description you have given of the snow, the sunbathing and the grandchildren's antics - with your ski-ing as well, it sounds as though you really enjoy life to the full. May your PMR vanish into obscurity soon so that you can enjoy it even more. :surfer:
Mrs_G
Posted