NO ACCESS TO A RHEUMATOLOGIST, BUT COULD THESE BE THE SIGNS OF PMR?

Bones, joints and muscles
1

Hello,

I'm in need of some evaluation, opinions and general feedback from experienced sufferers of PMR.

I'm a 66-year old male of Scottish/Irish descent, and several years ago, I started experiencing increasingly severe bouts of stiffness in the neck, shoulders, and backsides of the upper arms (i.e., the triceps), all associated with considerable pain and restricted motion, particularly when trying to extend either of my two arms over my head.

The condition lasts throughout the day and evening, and is far worse upon rising in the morning, but the onset of severity seems to slowly begin shortly before bedtime each night. All-in-all, the condition has progressively worsened and I've visited no less than 4-5 general practicitioners (GP's), all of whom essentially refuse to diagnose (or treat) it as PMR or fibromyalgia. In other words, they absolutely will NOT prescribe prednisone or prednisolone. Instead, they have referred me to local Rheumatologists who have all had excessive waiting periods of anywhere from 10-12 months.

However, amazingly, and almost entirely by accident, I've since discovered (after taking some prescribed for our family pet), that the entire array of symptoms are virtually 100% eradicated by a daily dose of 15-20 mg of prednisone. In addition, despite their referrals to specialists, I was also able to get one or more of those general practitioners (GPs) to order-up some key blood tests. Here are the results of those tests:

Erythrocyte Sedimentation Rate (ESR): 29 (Ref = 12.7-20.2)

C-Reactive Protein (CRP): 24 (Ref = 0.0-3.0)

Rheumatoid Factor (RF): <10 (Ref = 0.0-14.0)

Anti-Nuclear Antibody (ANA): Positive/High (Ref = Negative)

Anticyclic Citrullinated Peptide (Anti-CCP): 6 (Ref = 0.0-19.0)

Blood Sugar (Glucose): 158 (Ref = 65-99)

Needless to say, without ready access to prednisone or prednisolone, I remain in a fair bit of pain, and I've been enduring it now over a protracted period of time (close to 3-years). So my question is this . . . despite being a male (apparently 4 out of 5 sufferers are female), are these collective circumstances enough to support a 'sound' diagnosis of PMR by a specialist (when and if I ever get to see one)? Or could these symptoms and circumstances still be something other than PMR?

Thank you.

2

I believe the proportion is more like two thirds are female. PMR is a set of symptoms which can be caused by a number of different things.  The "classic" PMR we on this forum suffer from has no known cause although a lot of us can point to what seems to be the trigger, the straw which broke the camel's back. Which begs the question - if your doctors are so adamant it can't possibly be PMR, what do they think it is?  I assume no other painkillers have had any particular effect, which is true of PMR.  They can sometimes take the edge off, but are basically useless in helping you live a normal life.  And you say the prednisone has helped?  

If you google polymyalgia rheumatica differential diagnosis you will find sites which describe the various conditions which doctors should rule out before determining a diagnosis of PMR.  Perhaps you could persuade one of these reluctant medics to proceed with eliminating these other possibilities?  

On the other hand, you know, if it looks like a duck, walks like a duck, sounds like a duck, etc, etc, it probably is a duck.  

I wonder why they are so reluctant?

Meanwhile, don't stay on 20 mg for too long.  A month perhaps?  If you have a good supply of veterinary pred you still should be following a very slow taper plan to reach the lowest possible dose to control your symptoms.  This process usually takes about 18 months or two years or so to achieve.  

3

Thank you for your response.

To be clear, I don't have a continued supply of veterinary prednisone. It was just a one-time thing that I tried for a couple of days back in late 2017, but the results were beyond 'incredible'. In all my years of life, I've never once taken a medication that had more immediate and profound impact on the illness or the ailment, and that includes pain relievers, antibiotics, everything. Within 4-6 hours of taking it (20 mg) for the first time, I was a "new" man - I literally felt like I was 18-years old again. The pain was completely gone and the mobility had also improved to seemingly youthful levels.

As for your two questions about the doctors and their actions . . . I don't think they are (or were) purposefully trying to thwart my efforts to get a diagnosis or treatment. Rather, they simply didn't feel confident enough in the signs and/or symptoms to reach a firm PMR diagnosis. In addition, I think they were all well aware of the significant adverse effects of long-term prednisone use, and therefore reluctant to prescribe it for the relatively long periods of time needed to effectively treat the disorder. In other words, they'd rather that a specialist (a rheumatologist) be the one to enter that tunnel.

If it isn't PMR, did they have an idea of what it might be? No. But I couldn't agree more with your statement about "if it walks and talks like a duck", because unless and until someone can kill it, and show me that its positively NOT a duck, but a pheasant, then I'm inclined to go with PMR.

Thanks again.

4

I too was in considerable pain for months with no diagnosis despite multiple attempts to figure out what I had. I googled "high sed rate" and PMR popped up. The next day I was put on 20mg of pred and the pain was gone overnight. My Dr said, "that proves it's PMR.

5

Interesting! Thanks, Stan.

I think we're probably all aware of the fact that a high sed rate, even when coupled with a high CRP, doesn't necessarily provide definitive proof of PMR, and I suppose some would further argue that this is true, even when combined with a dramatic response to prednisone. But for me personally, when you add those three factors to something as unique as bilateral stiffness in the specific areas of the neck, shoulders and upper arms, I just don't see there being any other diagnosis. I'd be tickled to learn that I don't have PMR, but I'm certainly prepared to deal with it if I do in-fact have it, and perhaps most importantly, I'm growing tired of the pain, and of dancing around with apathetic, indecisive physicians.

But thanks again, and good luck with your treatment and long-term remission.

6

Where on earth are you to have rheumy waiting lists of a year? However - your GPs are hardly helpful - in many countries PMR would be diagnosed and managed by GPs. There is a downside in that PMR isn't the illlness, it is the name given to a set of symptoms that are caused by some underlying disorder and there are several.

About 1 in 3 patients with PMR are male - and there are quite a few men on the forums. What you describe is pretty typical for a clinical diagnosis of PMR. The only black sheep might be the high postiive ANA which often is not positive in PMR - but that doesn't mean it isn't. You have typical symptoms and your response to 15mg pred would be accepted by many doctors as enough proof. It isn't 100% accurate - but PMR is felt to be characteristic in responding dramatically to 15mg and your response sounds pretty dramatic to me! 

This

http://www.rcpe.ac.uk/sites/default/files/quick.pdf

was written to assist GPs to diagnose and manage PMR when recourse to a rheumy is not possible or will take a long time. 

Otherwise what I would have written has already been said by the others. But as I say - where are you? That makes a difference to options.

7

As others have said, your symptoms sound pretty typical of PMR and your dramatic response to 20 mgs. of pred would be a clincher for many GPs. I think in your position I'd  ask to see another doctor and if all in your Prctice are of the same mind I'd change to another Practice if  at all possible.

It would be  interesting to know whether they have any patients whom they have diagnosed with PMR and, if so, how they differ in their presentation.

Some of us on here have survived more than eight years of Pred. without falling apart.

Hope you get some sympathetic treatment soon.

8

I think your doctors need to bear in mind that untreated inflammation can cause damage as well, often irreversible, unlike nearly all the side effects of pred.  

9

"My Dr said, "that proves it's PMR"

It doesn't really unfortunately. It is just another piece of the jigsaw to help increase the likelihood of it being PMR. If only it were cast iron...

10

I was in a similar position you are in. Although my CRP was over 100. My GP diagnosed a virus which went on for 3 months! I suggested PMR but they discounted it. In the end I went to see a rheumatologist privately who diagnosed me in about five seconds. I was then able to go to my GP on the NHS. If you can visit someone privately it may be worth it if you are having trouble with GPs. I paid £200, that was in London. I think quite a few people are forced into going privately initially and then going back to the NHS.

11

To Eileen and Betty: Thank you for your responses.

If it sounds like I'm frustrated with these various GP physicians, you are correct. I'm actually VERY frustrated with them, but unfortunately, I don't have many options. I live in a small, fairly remote town in eastern Montana and there are only two rheumatologist within 100 miles, both of whom require referrals before they will see you, and both of whom have exorbitant backlogs. It's really quite ridiculous. In addition, I'm one one of those rare (perhaps irrational?) conspiracy theorists who firmly believes that the medical/insurance industries are all one big Ponzi scheme, designed to channel the money upwards and inwards (i.e., within the same organization), wherever possible. Given my location, and the various restrictions of my health services and insurance providers, I can't even look to alternative doctors without igniting a small range war. It's really quite sad.

12

Thanks ptolemy!

As you can see from what I just posted moments ago, I'm located in the western U.S., so I'm afraid I have very little understanding of how things work there in the U.K., but nevertheless, I think you're right - I think trying to opt out of my current insured provider might be the next logical step. I think I'll just look into a private rheumatologist (without referral if possible), regardless of how far away they might be, because it would be well worth the expense at this point.

Thanks again.

13

Yep, that's a great point, and something that I intend to harp on them about, real soon.

14

Is a trip to a Mayo clinic an option? I know nothing about your US system - except that it is seriously unfair and probably causes a lot of people a lot of problems when they aren't rich. 

15

Check the "rate my doctor" type things before you commit to anyone if you are going to do it without the insurance dependent referral.  As you might have gathered from this forum there are rheumatologists and there are rheumatologists, and they don't all "get" PMR and the fact that a pred regimen for PMR is very different than it is for other diseases they might treat with it.  Because pred doesn't cure the disease, just gives us reasonable quality of life until PMR decides to go into remission.

16

That's a brilliant idea, Eileen.  There's a clinic in Rochester, Minnesota!

17

Any chance your vet. would give you a prescription? 

 

18

No, I'm afraid the Mayo Clinic(s) are all a bit too far away for me, and unfortunately, you're correct about our U.S. health care system. It's a certifiable "mess", and I think its fair to say that in the final analysis, it serves the needs of very few Americans. Depending on the nature of the illness or ailment, even those who consider themselves "well insured" can find themselves in financial distress very quickly. One could argue that its the insurance providers (not the physicians) who actually practice medicine here, and of course, their decisions are guided solely by the almighty dollar.

Anyway, I'm in pretty good spirits about it ll now, because I firmly believe that PMR is in-fact what I have. So I plan on taking another run at my primary care physician(s) one last time, and if that doesn't yield some progress, then I'll try to locate another rheumatologist somewhere who is willing to see me without a referral and without insurance in hopes of getting a reputable diagnosis one way or another.

19

Yes. I have to admit, based upon their apparent apathy or skepticism, I've had to actually 'ask' one or more GP's whether or not they actually believe that PMR is an authentic disorder, and I've found both types. Some have said they firmly believe in its authenticity, while at least one said that he thought it was a complete sham, something that was a purely psychosomatic perception in the patient's mind. So I'm afraid that chances are, I'm still likely to struggle in finding the right physician going forward.

20

Haaa! I wish! I'm afraid there's no chance on that one, but that certainly helps to underscore just how ridiculous this U.S. health care system is. In fact, I recently read somewhere that a survey of some sort actually showed that pets of American families enjoy better overall quality of health care than their owners. And I don't doubt it.