PMR without pain?

p.s. - I don't know how this ties in, or if it even does, but his blood work was all normal except the ESR was 112. Last September it was 107. So it's extremely high for "inflammation".

Hi Beth, and welcome. I'll try to clarify some things for you - I hope it helps.

It is possible to have PMR without shoulder involvement - I've come across several US rheumys who think it MUST be both and I have to say I'm stumped as to why. There is such a thing as patient variation! And atypical presentations.

In fairness, if he already has PAD I imagine if it is affecting the lower arteries it COULD have a similar effect. Can he order a CT plus? There is one form of CT/PET scan that shows up inflammation in the arteries and that might help - sorry, can't remember offhand which it is though. However - to my knowledge ordinary PAD doesn't cause elevated ESR - that is very high and there is inflammation present somewhere.

The people who take much more than 15mg pred will be GCA patients (giant cell arteritis). It affects the eyes and high doses of pred (40-60mg starting dose) are needed to avoid loss of vision. PMR responds to 15-20mg - as you have seen. The lowest dose that works is used to avoid long term problems due to high dose pred.

You will find more info if you follow the links in this post on this forum:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

The paper at the end may be of interest to your PCP - it is aimed at him so he can manage a PMR patient better. MUST he be under a rheumy? Many PMR patients in the UK are managed by their PCP. I was referred but the rheumy was about as much use as yours! The PCP was so much better - and I had the magic response too. I also struggled to reduce for a long time.

Before the attempt was made to reduce the pred - what was the ESR then? You are not likely to be able to reduce successfully until the ESR has reduced to something more like normal, under 30 at least - if it is still up, there is still inflammation that hasn't been controlled. How soon was the attempt made? A good 6-8 weeks would be needed, probably more at that level of ESR. And the ESR would have to be well on the way down before you even thought about changing it. If 15mg works - no, he doesn't really need more except to possibly speed up the damping down of the inflammation.

But the bottom line is: I don't want this to sound harsh but he's 83, there is far less concern about the long term effects of pred so if 15mg makes him better able to function what more does the rheumy want? If he is immobile without, then all sorts of deterioration will set in - physical and mental. Had the PCP looked at other causes of polymyalgic syndrome? It accompanies a lot of things including malignancies - and age is a risk factor for that.

However, members of one research group in the UK acknowledge that PMR is possibly the wrong name: better would be "steroid-responsive polymyalgic syndrome". Which brings me back to my earlier comment. If I were a frail 83 year old and 15mg of pred made me feel better - I'd take that as being fine.

I do hope this helps - and do come back and a) ask questions and b) tell us what happens.

Eileen

Hello Beth

Just to add to what Eileen has said, I didn't have shoulder pain in the early days of my PMR. One of the tests carried out by many rheumies is asking you to raise your arms - I could do this perfectly well so the diagnosis was missed!

It does sound very much like your Dad's Dr is correct in his diagnosis, especially as there was such a dramatic relief in his pain. It might just be that he was not kept on the starting dose for long enough to get complete control over the inflammation and maintain that control.

The ESR was very high at diagnosis - was the test repeated before reducing the dose? If not, it should have been, and the reduction delayed until the blood tests showed improvement . Also, do you know if a CRP (c-Reactive Protein) blood test was carried out? This can be a better mark of inflammation than the ESR.

I had the same experience with extreme weakness in my legs and at one time losing all feeling in one leg and being unable to stand, but that was in the days pre-diagnosis and treatment, so in your Dad's case could point to an insufficient dose to control the inflammation.

At least your Dad is lucky to have such a caring daughter, and I hope thingssoon improve for him......and for you.

I don't know what a CT Plus scan is, but he's having a CT scan with some kind of dye.

When this first hit him, he had the ESR of 107, and was not tested again until last week (6 months after the 1st test) and his ESR was 112. So no, the ESR was not tested before lowering the prednisone, or trying to.

The Rheumatologist also asked him if he had jaw pain or scalp pain or headaches or vision problem - all "no". She had him raise his arms above his head, which he did with no hesitation. He has full range of motion. The only symptom is weak thighs. His knees and calves are strong.

Thanks for the great replies. The more I read on this forum the more I am convinced PMR is what he has. Not everyone has the same symptoms. 15 mg of prednisone doesn't seem to be enough - maybe something else is going on with him also. At first 15 was very good, but now it's not enough to keep him walking. It seems like he does well until we try to reduce it - then he falls or has a bad episode, and back pedals. Then we increase it back to 15 and he can't get back to the place where he feels really good, like he did when he first started taking it. He only saw a Rheumatologist once - he is being cared for by his PCP. The Rheumatologist is from India - that is where she got her education but we are in the United States.

He did have a CRP test done 5 months ago - his value was 13.8 and he has not had that done again.

I'll post again after the results of his CT scan. The PCP thinks it will show nothing, because he thinks he has PMR. Then he will speak to the Rheumatologist again.

Sorry Mary - I just meant a CT scan with "added extras" such as dye/contrast, it isn't called "CT Plus". A plain CT scan will show some things, with dye it shows more and it depends what sort of contrast is used. Badly put on my part.

It is common enough for the same dose not to achieve the same effect after a failed attempt at a reduction. This leads to a yo-yoing of the dose and it gets increasingly difficult to gain control and to reduce.

Must the PCP work with the rheumy? I think it is unlikely she will change her opinion - after all, she is the "expert" and would have to admit maybe she doesn't know it all. Though I am flabbergasted that the ESR was so high but it hasn't been checked at least monthly since to see how whatever is causing it is developing! It isn't a specific test so it could be a lot of things causing it - but it does indicate something is wrong. Once pred was started the raised ESR should have been checked to see if the pred was having any effect on what was causing it.

Thank you - that is such important information for me to know. I can talk to his m.d. about it (the ESR and the CRP blood tests).

Beth - sorry, what on earth made me call you Mary! You must think I'm a right wally!

All the best - do let me know how you get on! Best wishes for your dad too.

Eileen

ha ha ha I didn't even notice that! I have no idea what a "right wally" is - must be a British expression. Thanks for all the information and good wishes. My dad's CT scan is tomorrow so we'll know in a few days what will happen next.

The CT scan showed nothing wrong. His PCP referred him to a neurologist to check his head and spine. Have any of you had to go through this also? If so, what did a neurologist do? I guess he is trying to rule out other things besides PMR. The first neurology appointment is next week.

Yes - "right wally" is a bit British! Umm - "right idiot"????? Only kinder and laughing when saying it ;-)

No - in the UK CTs and stuff are last resort rather than first resort for several reasons - unless they suspect a stroke or something similar. I will be very cynical I'm afraid - a CT makes more money doesn't it? Doesn't apply in the UK. And we are unlikely to be sent to a neuro unless that or epilepsy or MS is a possibility. Other things as well probably but that's off the top of my head. They look to rule out a lot of things (or should do) but this sort of stuff would be the exception rather than the rule.

Such a definite response to pred would probably be accepted as a fairly acceptable diagnosis of pred-responsive PMR, especially in such an elderly gentleman with co-morbidities. For goodness sake, at 83 a moderate dose of pred that makes someone feel so much better would be accepted by most docs.

I do hope the neuro is helpful and sensible. Do report back and good luck.

The normal range for CRP <= 0.0-5.0="" mg/l="" -="" mine="" was="" measured="" at="" 218="" when="" i="" was="" suffering="" vision="" loss.="" sed/esr="">< 14 mm/hr - sed was measured at 117

my ruhamatoligist did not reduce my pred until my crp was in the low normal range. he also states that crp is the blood component that he most watched when he suspected pmr-gca. the dr. who confirmed my diagnosis works in queens land and was of indian parentage (as opposed to native-american which is part of my heritage). i have reviewed all my physical blood tests from 2000 to date and i can tell you that sed and crp were never looked at until pmr-gca was suspected.

yes, i did have a ct in queens land and an mri in the us because they were worried about me having suffered a stroke. until i was placed on 60 mg of pred my crp/sed was high and going higher.

one of the side effects of pred is blood pressure increase. mine went from 117/68 to 150/90. thankfully it is going down with the reduction of pred. 14="" mm/hr="" -="" sed="" was="" measured="" at="" 117="" my="" ruhamatoligist="" did="" not="" reduce="" my="" pred="" until="" my="" crp="" was="" in="" the="" low="" normal="" range.="" he="" also="" states="" that="" crp="" is="" the="" blood="" component="" that="" he="" most="" watched="" when="" he="" suspected="" pmr-gca.="" the="" dr.="" who="" confirmed="" my="" diagnosis="" works="" in="" queens="" land="" and="" was="" of="" indian="" parentage="" (as="" opposed="" to="" native-american="" which="" is="" part="" of="" my="" heritage).="" i="" have="" reviewed="" all="" my="" physical="" blood="" tests="" from="" 2000="" to="" date="" and="" i="" can="" tell="" you="" that="" sed="" and="" crp="" were="" never="" looked="" at="" until="" pmr-gca="" was="" suspected.="" yes,="" i="" did="" have="" a="" ct="" in="" queens="" land="" and="" an="" mri="" in="" the="" us="" because="" they="" were="" worried="" about="" me="" having="" suffered="" a="" stroke.="" until="" i="" was="" placed="" on="" 60="" mg="" of="" pred="" my="" crp/sed="" was="" high="" and="" going="" higher.="" one="" of="" the="" side="" effects="" of="" pred="" is="" blood="" pressure="" increase.="" mine="" went="" from="" 117/68="" to="" 150/90.="" thankfully="" it="" is="" going="" down="" with="" the="" reduction="" of="" pred.="">

my ruhamatoligist did not reduce my pred until my crp was in the low normal range. he also states that crp is the blood component that he most watched when he suspected pmr-gca. the dr. who confirmed my diagnosis works in queens land and was of indian parentage (as opposed to native-american which is part of my heritage). i have reviewed all my physical blood tests from 2000 to date and i can tell you that sed and crp were never looked at until pmr-gca was suspected.

yes, i did have a ct in queens land and an mri in the us because they were worried about me having suffered a stroke. until i was placed on 60 mg of pred my crp/sed was high and going higher.

one of the side effects of pred is blood pressure increase. mine went from 117/68 to 150/90. thankfully it is going down with the reduction of pred. >

cc - I imagine it depends on the country as to what is included on a normal blood panel. CRP is often included in Europe as it is easy to measure and also has relevance to cardiac problems. ESR is a bit of a pain to do hundreds at a time!