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
Regulator
Posted
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.
EileenH Regulator
Posted
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.
Anhaga EileenH
Posted
That's a brilliant idea, Eileen. There's a clinic in Rochester, Minnesota!
BettyE Regulator
Posted
Regulator EileenH
Posted
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.
Regulator BettyE
Posted
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.
Elijo Regulator
Posted
If your are on Medicare, or have good insurance and a good supplement, you can get good health care in USA. If you are "poor" it can be a different story. Next election we need to get a caring president who is not just for the rich. Enough said.
Regulator Elijo
Posted
I certainly agree with you on the need to jetison this particular president, but I'm not sure that I can agree about the condition of U.S. health care. I believe its declined dramatically in recent years to the point where you have to be at one the few premier facilities in the country to obtain what I (and most others) would consider to be truly "good" health care.
karenjaninaz Regulator
Posted
Reg, I live in NJ and I have no trouble getting the care I need - on Medicare. I am a retired nurse-anesthetist and made my own diagnosis. My primary doc misdiagnosed me as having fibromyalgia. He practically pushed me out the door as a nut case. I self referred to a great rheumatologist who put me on 15mgm of prednisone- a miracle. I fired my primary.
Maybe you can "educate" your primary doc with some of the references Eileen has posted elsewhere on this forum. There was a consensus paper drawn up by the UK and American Rheumatological Societies for PMR treatment. Latest studies show no long tern effect from the prednisone doses used in PMR- other than maybe cataracts.
I see you have a problem living in a a remote area of the US.
Regulator
Posted
Does active treatment with prednisone reduce the ESR (sed rate) and CRP (C-Reactive Protein) results in blood?
I would imagine that it does, which means that before I submit to any further treatment(s) of any kind, including prednisone, I should avoid them all until the blood draw, right? Otherwise, the elevated results of both tests might be depressed back towards normal readings, causing the physicians even MORE skepticism about whether PMR actually exists in my case.
EileenH Regulator
Posted
Regulator EileenH
Posted
Eileen,
Thank you for your most recent response.
The high ESR and CRP numbers that I posted earlier were the very first blood results ever taken for this particular array of (PMR-like) symptoms (back in late 2017), and they were the highest recorded so far. The only other time they've been taken was in early 2018 (about 6-months later), and although the numbers were still high (above reference ranges), they were somewhat lower than the 2017 numbers, because I had incidentally been on prednisone for another unrelated ailment just before the second blood draw. Consequently, I think I had better avoid any further spot-doses of prednisone for at least a couple of weeks before seeing another physician.
Elijo Regulator
Posted
From my experience (as a 2 1/2 yr. PMRer, recently no more PMR or pred), I believe if the prednisone has helped you, then that would confirm a dx of PMR. Hope you find a kind MD real soon. Can not understand why those MDs refuse to help you. Final note: I'm not too impressed with what I hear about rheumies. Keep trying, the squeaky wheel gets the oil!
Regulator Elijo
Posted
Elijo,
Thank you for your comment, and I agree with you on virtually all scores. I firmly believe that these collective circumstances point directly to a diagnosis of PMR and nothing else, and I too, do not understand the continued reticence by these folks to diagnose and treat it as such. Its just mind-boggling. And as far as rheumatologists go, the public profiles of the two rheumatology specialists closest to me (i.e., the ones with 9-12 month wait lists), are just as you've said - they're simply atrocious! Multiple reviews citing things like "overly arrogant", "condescending", "impatient", "inconsiderate and apathetic", all human traits that I least to encounter at this point in my journey.
margaret01981 Regulator
Posted
My GP made a doctor to doctor conference call to Rheumatologist to help get me in earlier and got me meds (after waiting in pain 2 months). I had to insist... She was reluctant to diagnose PMR and give meds, but did call Rheum.. After she referred me to him, faxed records, talked to Rheum, she was able to prescribe Prednisone that lasted to my first visit (waited Apr-Jul) but got some meds finally Please ask if your doctor could call Rheum and maybe together, they will give you prescription and instructions until your first visit. That may also help you get you an earlier visit. Best wishes. No fun being in pain in the meantime.
Regulator margaret01981
Posted
Margaret,
Thank you for your response and your suggestion. I actually tried this approach with one of my GP's. One of my two GP's is a VA (Veterans Administration) doctor and such arrangements are impractical or near impossible within that system. Its just too large and impersonal, and given my rural location, it often involves out-of-state travel. However, my other GP (who is covered by private insurance), tried to contact the local rheumatology group here that he had referred me to earlier, in hopes of getting an earlier appointment, and they simply wouldn't work with him. In fact, that was 8-9 months ago, and I was so upset over it, I drove several hundred miles the very next day to the ER at a major VA hospital and got a one-time (non-refillable) prescription for prednisone from that ER physician. Unfortunately, I exhausted that small (10 mg, 30-tablet) supply long ago, but this is how and why I am so confident in the effectiveness of prednisone for my symptoms, and why I'm so comfortable with my own self-diagnosis for PMR.