Polymyalgia pain ..........

In the UK there are increasing numbers of GPs who know what PMR is - and in fact it was a GP who agreed with me what the likely diagnosis was after a consultant rheumy refused to consider it despite the 6 hour response I had to 15mg pred! I agree though that in the US there is a major lack of awareness - but the rheumys are pretty rubbish at recognising PMR too!

I asked my Rheumatologist if he has seen much PMR and he said in the last 20 years of practicing med he has had 2000

Cases....wow

PMR is the most common inflammatory arthritis in over 60s, one in every 2 80 year olds will have developed it at some point. It is common, GCA, on the other hand, is an orphan disease, relatively rare.

But however many cases of PMR some doctors have diagnosed many of them have not learnt one fundamental fact: every single patient is different in their presentation and in how they respond to pred. One size does not fit all and the good ones remember that and work with the patient to achieve an optimum result. Guidelines are guidelines - not gospel.

Eileen, last night woke up at 2:30AM

Took a bite of food and took my 15mg

Pred and for the first time felt better in the morning.  Slept better too!  Thank for that suggestion!

I assume we are talking 'white' Prednisolone! How much extra lead time is needed for coated version and how does one deal with some of each?

Thanks . . . .

Correct David! 

The time taken to achieve peak blood levels with enteric coated pred depends on the person to some extent and also whether it was taken on an empty stomach or with food. In general it tends to be somewhere between 6 and 8 hours to get to peak - and it is also a different shaped curve. With enteric coated it is a slower rise to the peak and slower fall off afterwards, non-coated white pred is a quick rise and a similar fall, perhaps a bit faster. That may be the reason that enteric coated pred apparently has a poorer/less reliable effect in some people although the studies were done in patients with Crohns disease so they had dodgy gastric function anyway.

If I were on enteric coated pred now I would take it before bed, maybe at 9pm, but I think you need to experiment a bit to find the best time for you.

The logical thing to do when needing to combine them would be to take the enteric coated before bed and the balance of white tablets as early in the morning as possible - although if the enteric coated have achieved a good morning result, if you took the white ones with breakfast the effect might last into the evening better if you have problems. 

That's interesting and incredible helpful . . . .

as I have been happy on 7.5 for a couple of months and getting ready to drop again after Christmas but with some heavy days driving to see relatives and the usual Christmas hype I started to flare so took and extra 2.5 for a couple of days . . . Great result . . .so dropped back to 7.5 (not great).

With what you outlined I could take a bed time dose and then gauge my state the next morning and top up as necessary. I'm confident come January 1st I'll be balanced and can go onto look at 5.

 

You have answered your own question to some extent - you are well at 7.5mg but with extra activity/stress you are not. That really does suggest that maybe 7.5mg is your dose for the moment. Where 7.5mg is achieving a good control, 7mg may not - and believe me, 1/2mg can make that much difference!

Many doctors say they won't worry greatly about a patient who is steady at 7.5mg. Yes, less may be preferable but this is also the point at which your own system has to wake up and provide a top up. 

In the 10 months of membership in the PMR Club I have never thought of, or described PMR as a type of "inflammatory arthritis".  Clearly I missed something in all my reading!  Must be that fuzzy, prednisone head of mine.  I've always associated anything "arthritic" to joint pain, not muscle pain.   In reading Kate Gilbert's book I also learned that I had been pronouncing GC Ar-ter-i-tis incorrectly.  I had been saying arthritis!  Thank goodness I'm still living and learning!

Hi Jean yes I used to think the same but no its because its inflammatory  it gets put with the Arthritis I have had it 14 years now and still  amazed at how little they know about it and what it does and no research its a very nasty illness  and the markers are not always high when its bad so vert misleading. . I have found that if  I get stressed or tired it comes on worse.

I was thinking of it as an arthritis because of the symptoms and effects and historical classification under rheumatology although technically it is now realised to be a vasculitis that causes muscle and joint symptoms. I had a lot of bursitis, synovitis and tendonitis that affected joints. Because of that the rheumy was desperate to give it an inflammatory arthritis label - but not PMR.

Teenyjeeny - it isn't entirely fair to say "no research". There are very active research groups in Italy and Spain as well as at least 3 main centres in the UK. Unfortunately research is an expensive business and PMR and GCA tend to affect older patients, although it is now being picked up that also people under 50 get it. Until a couple of years ago it was only considered for over 55s, the vast majority of people are already retired so it didn't count as something of economic value in the workplace. As the retiral age increases it will become more of a talking point where people are unable to keep working. 

It remains a clinical diagnosis and the greater fault is that doctors have often lost clinical skills - if they can't take a blood sample or send the patient for some test or other they struggle. 

Thanks Eileen.  So, when I'm asked (as I always am): "What's PMR?" should I say it's a type of inflammatory arthritis.  What I have been saying is that it's an autoimmune disorder causing inflammation and muscle pain.  I don't want to mislead people and add to the confusion and misinformation about PMR.  I can also indicate a possible tie in with vasculitis.  Interestingly, when I was diagnosed I was referred to an Internist not a Rheumatologist.  When I asked why, I was told that Rheumatologists in Canada don't know much about PMR.  They mainly deal with arthritic ailments.  Very early in my treatment I provided my practitioner with the info you post to all PNR newbies and he and I quickly came to a decision that we (mainly me) would manage my treatment.  As in most cases the 2 different internal medicine specialists I saw were only interested in reducing prednisone ASAP.

No - I wouldn't suggest the world it is arthritis  Why? Because you will immediately get "Oh my dad/uncle/aunty/MIL/SIL/grandma has that and she's fine with a couple of paracetamol..." ! Noone who doesn't have it knows the difference between osteoarthritis and all the rest no the degree of disability any of them cause. What you are saying is absolutely correct. 

I personally don't believe we should be under rheumies at all because many of them don't get the difference between using pred alongside other medication in arthritis for flares and using it for PMR which goes on and on. That said, I do know at least 5 who do! Vasculitis specialists tend to be physicians (internists) but in the UK at least they are few and far between and history says "rheumies do PMR". The rest of Europe is much more varied although it is often rheumies here too. But obviously "ordinary" internists don't get it either!

Yes I will never forget 2000 my Husband had just retired and we had booked to take the whole family to Florida for a trip of life time. I was very ill they thought I had Lupus so saw Rhueumatoligist he said no its PMR I had never heard of it . Then my poor husband collapsed he had inflammation of the inner ear our young son had a heart attack our  son-in-law had an absess on his tooth our other son-in-law  had chest infection so it looked as if our holiday was going nowhere !!! what a nightmare . so I can never ever forget being told about my PMR. we were very lucky we had three weeks to go and in that time my Husband made full recovery as did our son and son-in-law's and we were told go and enjoy and it will help you all recover so there was me and our son in wheel chairs  but we did go and we had an amazing holiday that our grandchildren talk about to this day .!!! I wasn't that well but I managed the pain with a high dose of Preds