So I started taking 20mg of prednisone 6 days ago. After 36 hours, my stiffness was completely GONE. I even had some improvmement 4 hours after taking my first dose. The difference is remarkable. No problems getting in and our of bathtub, getting in or out of car, walking, dressing, etc., etc. However in my case some things were not typical, such as my age (50 years old), my stiffness was not worse in the morning, and my ESR and CRP were elevated but not really high. Even though I have dramatic results with the prednisone, I worry that it may be something other than PMR in which prednisone is not totally necessary. I am just not 100% confident in the diagnosis and do not want to take steroids long term if this is the case. Anyone else feel the same?????
Do not worry about your young age.Mind you I got a bit of a surprise when they gave me the leaflet stating average age of onset was 72.At the time I was 45;but the reaction to prednisone is fairly definitive.Within 24 hours of the test prednisone injection I was on hands and knees scrubbing the lino and dusting skirting boards (it was like a miracle)
Except for your age, your description sounds almost identical to mine, including the inflammation markers, which one doctor had dismissed as normal (although they were slightly raised). I have no doubt that I've got PMR. I've been puzzled by that description of being more stiff in the morning as being a typical symptom. I found no matter what time of day if I was at rest for more than a few minutes I would be just as stiff when moving again.
Do not worry - the diagnosis will be correct.
The new guidelines will show 50 onwards and we know people as young as in their 30's.
Statistics are done on a bell curve, the top of the curve is the most, but people fall down on either side, so a 30 year old can be on the left side and a 80 year old on the right side.
You need to find out as much as possible and educate yourself. Follow this link to another part of this site.
http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Then go to PMR&GCAuk North East website and read up on it, but by bit. Knowledge is Power.
Good Luck you are embarking on a journey none of us ever wanted to take, but there is light at the end of the tunnel - we just do not know how long the tunnel.
Hi K8211,
My experience was identical to yours, but am cnofident it was PMR.
Had slightly elevated ESR, CRP, horrible pain and stiffness that disappeared more or less within 36 hours after taking 20 mgs Prednisone. Only difference was a stiff shoulder that was eventually helped by physical therapy for a few weeks (did the exercises at home, also). I was 67, when PMR began.
First Prednisone December 2013, now at 2 mg and reducing to 1.5. So far no flares (very thankfully).
Good luck on your journey.
Paula
Sorry your part of the club but your on the best site for information. I was not stiff but in severe pain and was so glad after months they diagnosed pmr. It was within an hour i could feel the prednisone working qnd my husband thought i was nuts until later research. I have more stiffness now than pain.
It is rarer for Canadians to have this desease and i am on the younger side of the curve. Don't worry about your age.
Many take their dose early morning but my pains would return later afternoon and like you i started on 20mg. Within a werk i would split it 15mg am and 5mg at 3pm. I tell you this just in case you find you have afternoon pains its ok to split your dose.
Get a bone scan asap for a baseline and start on your vitamins. I take calcium, E D B6 MULTI VITAMINS
others also take k2? I have to start.
Hope this helps
Mariane
Mariane, where did you find the stat for Canada? A site I looked at indicates prevalence of PMR roughly same as in UK (population twice as high, number of diagnosed cases also twice as high). Although these stats are all extrapolations and may be highly inaccurate.
I wondered about this too. What I read when I was first diagnosed was that it was very common and generally found in females of N. European extraction. I am in the U.S. I would think that our population here would be about the same as Canadas based upon ethnicity. Just curious. I coudn't find a stat on that either. My findings also were average age of 65, which when you go on either side of that you are going to find some in their fifties, perhaps younger, and some in their 80s or more.
The site I found was extrapolating stats from USA information, so actually when I looked at it some more it was rather useless. As both Canada and the USA have very large non-European populations you would expect them to have a lower incidence than Northern European countries. Also I have a bit of a theory that the incidence may also be lower in counries with more sun year round. It would be interesting to know if northern Europeans in southern climes are equally at risk, or whether they in fact have a lower incidence. I do know, for example, that the incidence of MS is very high in Canada compared to other places, and particularly in the east. That would almost imply an infectious agent of some sort, wouldn't it? Perhaps a lot of these auto-immune and inflammatory conditions are going to turn out to have some sort of bacterial or viral cause at the root, with certain populations, whether genetically or environmentally, more at risk.
You are posing some very interestign threories, yes, the U.S. has many many ethnic groups. I happen to have Swedish, Irish, English, and Scottish in my background. I do live in a sunbelt area in S. California. I am careful in the sun now, but as a teen I was a sun worshipper at the beach and always vety tan. I have wondered about injury triggering mine. My rheumatologist said in my case it is possible. I had a very bad fall just a couple of weeks before the onset. I tripped carrying some things and landed on all fours. I literally felt the muscles in my back being jarred. I ahd never had that sensation before. X-rays showed no fractures, however, I do have a tear in the left shoulder rotaor cuff. A cortisone shot really took care of that, howver, I am expecting that pain to return. On my last visit to my primary, just last week, the blood work he ordered showed that I do have some sort of low grade viral infection. I feel totally fine. I am pretty much pain free now. I have not started to reduce my pred yet. I am still on 20 mg. I had put a call into my rheumatologist on Monday requesting either a 1 mg or 2 mg prescription so that I could begin reduding My tabs now are 10 mg. I can cut them in half, but it would be very difficult to be accurate in further cutting those. I am annoyed that he has not returned my call, but I have been busy and remiss in calling him back too. You are a wealth of information, I appreciate all that you do for all of us. Yes, my bookmarks are also growing. LOL
Your description sounds pretty similar to many of us. I suffered with so much pain prior to diagnosis that I could barely walk, get in or out of car, dressing myself was an issue, couldn't roll over in bed without such pain it was unbelievable. To try to make a long story shorter I saw an Orthoepedic first, then my GP so by the time I went to the RA doctor I had had multiple testing MRI, xrays, lots of blood work. My ESR and CRP were elevated but like you not really that high. The RA dr started me on 15 mg Prednisone and said if my pain was relieved within a week it is PMR.as that's pretty much the final way to diagnose it. It took about 4 days for me and it was like a miracle the pain was gone. I was ecstatic at the time as my life had diminished being able to do very little. She has never had any reason for her to change that diagnosis. I've been on the Prednisone a year now. I had trouble coming to terms with having to be on them long term and I can say you will have many transitions to get through. I am sorryfor your PMR diagnosis. It isn't an easy walk but it isn't terminal and there is always the hope that you might be one of the ones that is through with it in a year or two. Wishing you the best.
I don't think I really have very much information - no more than anyone who's had this condition and been on these forums for a few months. But I do tend to ask an awful lot of questions and wonder about things. I must have driven adults in my life nuts when I was a child!
just as a matter of course I question most things continuously. Its not worry or anxiety, just simple questioning, and being alert to any change. Just the way I am.
Diagnosis of anything (medical or otherwise) can be complex and there's always room to question. Diagnosis is as much a grey art as a precise, black and white, science. Diagnosis requires judgement, not the simple decision trees that computers can follow. So there's always room to doubt.
Having said that, at the same time there's the part that accepts the diagnosis and thus the treatment. And if the treatment works there's an increased chance the diagnosis is correct.
I can imagine someone reading that wondering what I do with this apparent conflict mangling my mind. But its really just a case of "go with the flow" while checking that its a reasonable flow.
Nothing is certain, and I would be over the moon if I had something more treatable. But unfortunately the diagnosis and treatment are sufficiently consistent to convince me, and will never be 100% certain.
So I reorganise my life around it, while quietly hoping that it would all go away, like a bad dream.
The fortune cookie at last night's Chinese meal said "your greatest wish is about to come true". I suspect I may have a long wait.
Enter, Polymyalgia Rheumatica+Vikings in your search engine. There is a weath of information and Caucasian (white) people are most the susceptible.
So blame those Vikings - some of whom where probably ancestors as I live in the North East but our family records don't go that far back
I
Julian, I haven't really questioned prednisone, just the fact that after all these years a safer version for chronic users hasn't been developed. But I questioned the bone drugs "they" were trying to push on me, even before a DXA scan, and finding alternatives to that has led to a huge number of questions, and answers which seem to shift daily.
I am sure that the adults in your life loved your inquisitive mind. I am a retire teacher, and I just loved the questioning minds of my students.
Also responsible for at least some of the rh negative blood carriers in the population.
Oh, my gosh, that's me too. I am Rh negative. Interesting.
Hi Anhaga,
Do you mean that Scandinavian/Viking ancestry may be responsible for negative Rh factor?
I am A negative.
If there are Vikings in my background, and there well may be, it does not show up on my DNA test that I did. I am 99% Eastern European. I wonder whether minute traces of DNA show up on these tests.
Hi, K: You did not describe your symptoms in detail, but your problems with daily function are typical of PMR.
Symptoms vary from person to person- for me turning over in bed at night hurt like screaming blue blazes. I could not lift the bed covers off and had to sidle to the edge of the bed then roll off onto my feet- standing up from there caused more yelps of pain. Then I'd do the Godzilla stomp down the hall. My upper arms shrieked with pain if I moved my arms away from my sides.
Others never have pain in these places at all.
The very rapid alleviation of such symptoms with prednisone is almost diagnostic of PMR by itself.
About your age- think back to everything you know about "the normal curve." As you get farther from the average value (in this case age) there are fewer occurrences- but not NO occurrences. Many doctors seem to have forgotten this and discount the diagnosis is you are more than a few years under the average age of onset (about 72).
Do you have another probable diagnosis in mind?
I feel lucky that I have PMR, one of the few autoimmune disorders (that I know of, anyhow) that has an effective treatment. No one wants to be on steroids longterm, but better that than crippled and in pain!