Hi all, I posted previously as terrible bilateral upper arm pain for 6 weeks. GP was reluctant but did prescribe pred with almost immediate belief.
She still doesn't believe it's PMR and wants me to taper pred until I see Rheumy next month. She's says I'm too young at 47!
Is it that uncommon at my age?
TeePea, although we're told the average peak age for PMR is the early 70's, we are hearing of people who are being diagnosed in their late 40's so perhaps more rare but certainly not unlikely. The fact that you have experienced what you describe as almost immediate relief from your starting dose (I'm assuming it was 15mg?) more or less confirms the diagnosis. The important thing now is NOT to reduce too far too soon. Have you had your Vitamin D levels checked? If not, do ask for the relevant blood test as a deficiency can lead to pain in similar areas to that of PMR.
Hi Teepee, I empathise what you are going through. I had classic PMR pains at 46 which my GP believed was PMR. However because bloods were normal and my age was referred to Rheumatologist. This is where I started to get a lot of skeptism about my age. It took 14 months from start of symptoms to getting Prednisone which worked within 4hours. Rheumy reluctant admitted I have Attpical PMR. I am now under a different Rheumy who is skeptical because his youngest patient was 55, so the fight continues. Good luck with your Rheumatology appointment. X
I was 51 when my PMR started and it was with bilateral thigh claudication which was horrendous if I tried to do anything in the gym or climb stairs. And I couldn't hold even a small digital phone to my ear for more than a few minutes, to chat on the phone without my biceps cramping. I had to keep swapping the handset from one hand to the other. In fact, these are symptoms that are usually to be found listed under GCA rather than PMR. I also had jaw claudication and scalp pain for some time. Despite repeated visits to the GP it was never picked up by my usual doctor.
The AVERAGE age is 72 for PMR, not sure about GCA. Half of people of age 80 have PMR. That means there must be a fairish population below 72 - and about 5% at each end of the distribution will be what are called "outliers", and at the bottom end they are the people in their late 40s. The guidelines now say PMR should be considered in any patient with the right clinical picture who is over 50. And medicine and biology don't wait for your 50th birthday and suddenly say, OK, you can have this illness now.
If you took a moderate (15-20mg) dose of pred and got almost immediate relief that is the test that the Bristol group use for their atypical patients (young, normal blood tests etc):
rcpe.ac.uk/sites/default/fi...
This is aimed at GPs to assist them in diagnosing and managing PMR - you will find their "pred sandwich" test described quite clearly. You have fulfilled the first part: relief in a very short time. If you stop the pred and the pain comes back in a similar time span you will have fulfilled the second part. Show it your GP, if she is still stubborn, ask for other GPs to give an opinion. One GP in my practice was hopeless (as was a rheumy) - the other took one look at the diary I had written about the relief and time scale and agreed it looked like PMR to her and if the pain was gone with pred she was quite happy to say it was.
Out of interest - where do you live?
Nope. I Was 46 when diagnosed with PMR and I've heard of people who are even younger.
TELL your doctor that you're staying on 10mg until you see the Rheumy, who will then decide your treatment.
After all, 1 months 5mg Pred is only about £1.31 so it's not costing much and as for it taking longer to wean off steroids the longer you take them - which would your anther have - PMR with pain or PMR without pain?
This is a vicious circle. Very few eople are getting the dx with PMR under a certain age. Ipso facto, there arefewt people under the certain age with PMR!!! Grrrrgh. This neglect of so much patient experience is ridiculous in an age when the data handling powers of computers are immense and should be put to recording and analysing just who gets what , when and why?. I developed bloodshot eyes like Dracula especially in the morning after I started on just 15 mg of pred. My doctor dx dry eye unrelated to the pred. and I went along with this but wonder of wonders the red eye has diminished exactly parallel with the reduction in pred. I stopped taking the drops as they didn't make any difference and I didn't have scratchy feeling eyes anyway, and no doubt my dry eye is now cured by the drops in the records even though I don't use them . Meanwhile what has actually gone one is totally different and unrecorded. Whether I am right or wrong if recorded would be proved by the existence or otherwise of others with the same experience.
Same happens with adverse drug reactions - the docs say "it's a known side effect, no need to report" which is totally wrong as only if all adverse reactions are reported will they know the actual incidence as opposed to the incidence claimed by the manufacturers who want to hide as many as they can. A prime example is statins of course.
Shame they don't understand statistics isn't it? There are ALWAYS outliers in the little corners of the bell-shaped curve...
Hi PMR pro. Several of my friends gave up on statins long before the unpleasant side effects were accepted. Even recently on the tv prog. "Trust me I'm a doctor" there was a noted "expert" who still denies any adverse effects and moreover thinks we should all be taking them.. I expect you have heard of the "friends and family" test which hospitals and now GP's have to operate. As a qualitative, anecdotal approach (trip advisor style). i.e. "Would you recommend this (ward, hospital, surgery) to your friends and family" its a good idea but boxes are being ticked and analysed without regard to any variables. I have heard hospital staff say that the some people are answering the question multiple times as they go in out and how are GP's to keep track of who has been asked and who not in the limited time at their disposal.
HOORAY - My GP understands PMR
Kudos to GP for studying PMR
Does anyone else find 17.5mg pred doesn't stop PMR pain?
Mixed feelings following first GP appointment since PMR diagnosis
