NO ACCESS TO A RHEUMATOLOGIST, BUT COULD THESE BE THE SIGNS OF PMR?
Posted , 18 users are following.
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.
0 likes, 58 replies
Anhaga Regulator
Posted
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.
Regulator Anhaga
Posted
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.
Anhaga Regulator
Posted
Regulator Anhaga
Posted
Yep, that's a great point, and something that I intend to harp on them about, real soon.
stanley36717 Regulator
Posted
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.
Regulator stanley36717
Posted
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.
EileenH stanley36717
Posted
"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...
EileenH Regulator
Posted
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.
Regulator EileenH
Posted
"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."
I'll admit, the ANA result and its significance remains a bit of a puzzle to me. Strictly speaking, its an indicator of 'auto-immune disorders' (any and all), which of course PMR certainly is, so I would have expected the ANA result to be elevated. In fact, its a surprise to me that its not routinely elevated in cases of PMR. It is most certainly elevated in Lupus and other such AI disorders.
I don't mean to question you on this, but are you certain of this (i.e., that ANA is not typically elevated in diagnosed PMR patients)?
BettyE Regulator
Posted
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.
ptolemy Regulator
Posted
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.
Regulator ptolemy
Posted
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.
Anhaga Regulator
Posted
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.
Regulator Anhaga
Posted
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.
EileenH Regulator
Posted
Now it would be a very gifted patient who could produce such effects in response to a psychosomatic state...
Regulator EileenH
Posted
"Now it would be a very gifted patient who could produce such effects in response to a psychosomatic state... "
Indeed. At this point, its almost an insult of sorts to have any of them assert such a thing, and I have to admit, I've gotten to a point where I am offended by it. I fully recognize the adverse effects of prolonged prednisone treatment, and so, to some extent, I understand their reluctance to enter a situation wherein they are repeatedly prescribing it for as long as 2-3 years, but I resent having been put in a position where I'm going to be chasing this dragon up and down the entire western U.S. Its absurd. Its a Catch-22. The few who CAN effectively diagnose and treat it are unavailable for 9-12 months, and the many who are available and capable of diagnosing/treating it, simply won't do so. Its exceedingly frustrating.
And as I posted here earlier, even if I soon revisit one of my local GP's in an effort to get him to make a diagnosis, I'll probably want to avoid any prednisone for a couple of weeks beforehand, just to insure that the ESR (sed rate) and CRP (C-Reactive Protein) levels have returned to their elevated levels, or I run the risk of continued skepticism by these folks.
Regulator EileenH
Posted
Eileen,
No, as a matter of fact, I'm not sure they do, but then, in fairness, I'm not even sure that I do (!), other than the fact that PMR appears to occurs in males more frequently than does FM.
EileenH Regulator
Posted
Fibro is a problem with perception of pain in the brain, PMR is an inflammatory condition where the inflammation causes the symptoms, including pain. Many doctors don't think fibro is "real" - the guy who wrote it up originally is said to wish he'd never done so. It is an abused and very over-used diagnosis. I believe many younger PMR patients (and a few older ones) have been labelled as fibro - when it isn't.
Regulator EileenH
Posted
As I've said previously, this entire journey for me began several years ago, with some troubling (and quite audible) 'popping' sounds coming from the ball joints in both shoulders when my arms were extended over my head, and by a slowly increasing stiffness in the upper arms. By the time I had visited my first physician, it had worsened significantly, as I was beginning to experience profound stiffness at the very base of my neck that seemed to escalate late each eveining. This stiffness in the neck was accompanied by a distinctly felt, but inaudible 'popping' of something deep at the base of my neck, much like someone cracking their knuckles. Shortly therafter, I started resaerching things on-line, and I soon came upon published symptomatic descriptions of fibromyalgia (FM). Not knowing anything about PMR at the time, I was convinced that I must have FM, so I finally went to see a physician about it. He quickly dismissed any thoughts of FM based almost entirely upon gender alone, but he ordered up some blood tests which subsequently showed ESR at 50% above reference levels, and CRP at nearly SEVEN times higher than reference levels! To his credit, that lone primary care physician raised the spectre of it being PMR, which he readily admitted to being fairly common in folks my age, by he then started waffling on it, saying that prednisone had mountains of negative side effects and that "some people use it to get high". At age 65, I assured him that I wasn't interested in using it to "get high", but he stood his feeble ground at that point and started-in with the need for me to see a rheumatologist, before he would prescribe prednisone.
And now, nearly 15-months later, here I sit, with all of the symptoms and related pain, and apparently, all of the clinical evidence necessary for general practitioners and even internists elsewhere in the world to confidently arrive at an official diagnosis of PMR . . . yet I still, cannot get a diagnosis or treatment. Its definitely one for the books!
EileenH Regulator
Posted
"some people use it to get high" - I can't BELIEVE a doctor said anything so stupid! Where on earth did he get that idea from? Must have been on something during his pharmacology lectures!
High doses of pred CAN lead to feelings of anxiety. Many doctors are convinced "pred will make anyone feel better" where that isn't entirely true. I felt loads better after a single dose of 15mg of pred - but that was because I could move at last! The contrast was enough to make me feel euphoric - but nothing to do with a "high". But in PMR you shouldn't be above 20mg (25mg max) and that for only a short time. And there is now study evidence that, at PMR doses, apart from cataracts there are no adverse effects that wouldn't be found in an age and gender matched population not on pred.
And if pred has loads of negative side effects - perhaps he'd like to consider what that unmanaged inflammation is doing to your body - increasing the risk of cardiovascular disease and some cancers - and what the increased risk of it developing into GCA where without very high dose pred you could well lose your sight. No usual side effect of low to moderate dose pred matches THAT.
ptolemy EileenH
Posted
I don’t know if I am totally in agreement with the article on PMR doses only possibly causing cataracts and the rest you will get anyway.
Danrower ptolemy
Posted
several years ago I made the comment that I had never had any substance addictions (except ice cream), but after the first hit of pred after 8 weeks of misery, that I would do WHATEVER needed to obtain it. Legal or not. I also observed that it helped me identify the horrible quandary of substance addiction. I realize pred in itself, is not addictive, but isn't substance abuse based in pain avoidance?