PMR and Osteoarthritis

Thank you for your responce, Constance.  Are you in and out of remission during the past 5 years.  Do you have symptoms even while labs are normal?

I have a very atypical PMR.  First diagnosed 5 years ago and, as I mentioned before, started on a very high dose of pred.  ESR was 88, CRP 58 or so (can't remember exactly.  Not sooo high, but they kept rising even though I was taking such a high dose.  Finally I collapsed ( in tne rheumatologist's of all places)!   By this time ESR was 132, CRP 100+.  I was hospitalised for two weeks (Drs got me down to 30mg).

It has been a very long 'journey' and I have never been completely pain free (except for the euphoria of the first day after diagnosis).

This is NOT what most PMRers have to go through.  So don't worry!  Others with more 'normal' PMR will help you on your way

Take care.  Regards from C. 💐

Hi Eileen

So good to hear what you said about "Rheumy" and about their matter of fact , rude and  "know it all"  " attitudes.  When I was first diagnosed with PMR, and with my first appointment with the Rheumatologist, i commented about my fingers (both hands) being swollen and stiff.  He took one look at them and said, "ah, you've got rheumatoid arthritis (RA) " .  I replied .. saying woww, that is a quick diagnosis!! He replied saying that it was typical of RA because it was symmetrical. (My RA result was negative) .  He wanted me to start on Methotrexate.  I was on around 20mgs of Prednisolone at the time. Anyway, i did not take the Methotrexate ( I think it is a drug of many side effects), and I did not want to add on Meth plus my pred.  I am glad i did not.  I have come to learn more and more about PMR , and knowledge and understanding of the disease process is vital for each of us to respond to this condition.  Eileen,  thanks for your expert contribution to this forum .

It never ceases to amaze me that so many doctors have x-ray eyes and lab test noses. The level of certainty they express with no evidence is mind-boggling. Perhaps they think it looks weak to say "It could be..."

Perhaps I am a bit sensitive about it - I used to work in the labs and OH ran a department that provided non-radiological imaging (i.e. not x-rays). To listen to some doctors we could be out of a job...

Thanks for your info.  

My rheumatologist twice, once in 2010 and again in 2016, told me I had osteoarthritis and there was nothing that could be done about it. I looked him straight in the eye and said the symptoms are exactly like what I had in 2010. He told me that you can not get pmr twice. I got a second opinion from another  doctor and I have pmr again.

Why "can't" you get PMR again? Actually, in one sense I suppose you could say he's right - the autoimmune disorder isn't cured, only in remission and the potential for it to wake up again remains. Just like shingles after chicken pox. But you only get the real illness once - PMR is just the symptoms.

Don't they do ANY reading of the medical literature?

Thanks Daniel. Perhaps I'm having a flare with the osteoarthritis.  The sharp pain and stiffness in hands and forearms in the morning is debilitating, even while at rest.  Labs not elevated for PMR.  The pain I've had from the degenerative joint disease I have (2 back surgeries and both hips replaced) seems to be different than what I have in hands and wrists now.  

In some people the labs do not rise while they are on any amount of pred. They should only ever be a guide and symptoms always trump labs. 

EileenH,

          I am on my second case of pmr over seven years and the lab results both times suggested that I did not have pmr. The pain told emphatically that I had pmr. One dose of 60 mg prednisone made all pain go away, a sure sign of pmr

Not disputing your PMR diagnosis, but 60 mg pred is going to make pain of all kinds go away.  Normally that is the dose given for GCA.

I'm not disputing the PMR diagnosis - but I will dispute "One dose of 60 mg prednisone made all pain go away, a sure sign of pmr". If there is a confirmation in the response to pred then it is not to 60mg, it is to 15-20mg. PMR is characteristic in responding to a low to moderate dose. Almost all forms of inflammatory arthritis would respond to 60mg. It is a dose used for GCA to reduce the risk of blindness - it is irresponsible to use that high a dose in "just" PMR since the potential side effects are severe and it adds greatly to the overall steroid load as well as extending the reduction time considerably.

Tell that to the doctors. It was three different doctors that started me at 60 mg.

I'm merely quoting what all the top rheumies in the PMR field say! And 60mg for PMR is using a sledgehammer to crack a nut. But the main point was that using 60mg for a query PMR tells you very little about response to a moderate dose of pred as a diagnostic tool!

My experience is that "top rheumies" do not know a great deal about PMR.

What do you mean by "using 60mg for a query"? In each case they prescribed 60mg to 10 mg with two days at each level. This seem to be a common step down approach to getting ride of the pain and then finding a level that can be maintained for awhile. 

"for a query PMR" was what I said. Using a 60 to 10mg "ssteroid pack" may be a common step down approach in some parts of the USA. It is never used in the UK as that is not how they use steroids. Doing that will never find the longer term dose either - the reduction is far too fast to allow symptoms to return at any dose above about zero. And it certainly isn't the recommended approach in the international guidelines which are drawn up by a committee of rheumatologists and patients drawn from all over the world, most particularly the ACR and EULAR (American College of Rheumatology and its European equivalent).

The top rheumies I am talking about DO know about PMR since they do research on it - I and others from the charities are patient research partners with them. 

I wonder if Daniel's rheumies thought it 'could be' GCA?  I was started on 30mg - which was for a very short time - but as the blood results kept rising and rising my doctor said "we'll zap it with 40mg".  Once again it didn't,  when ESR rose to 132 and CRP 100+ I was hospitalised and consultant put me up to 60mg.  I did have shooting pains in my right temple, but no biopsy was carried out.  I was discharged after 2 weeks and put down to 30 again.

You may remember my story Eileen, but it might help Daniel or others whose drs put them on higher doses!