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
amkoffee Regulator
Posted
I am going to let others answer your questions. But I just want to point out that having to wait 10-12 months to see a rheumy is a very long time but if you don't make an appointment with them now, you will still be in the same boat you are now. If you haven't already, make the appointment, ask to be put on a cancellation list (although in my own experience cancellation never happen for me) and wait it out. It sucks to be sure and there really isn't anything else that works like prednisone. You could try an anti-inflammatory diet. You might get a little relief from that while you wait.
Regulator amkoffee
Posted
Amkoffee,
Thank you for your response as well. Your point on the timing of things is well-taken, and I can assure you, I'm not going to let this thing languish another year or more. Its already been far too long since I've had any form of personal understanding, empathy or treatment, and I intend to get this addressed very soon, regardless of whose feathers might get ruffled in the process. Without prednisone, the pain is considerable, and perhaps worst of all, it doesn't ever seem to let up in any meaningful way throughout the day or night. But if I take 15-20 mg of prednisone, and I take it early in the day to avoid the associated insomnia caused by it, then I am quite literally pain-free for approximately 48-hours before the stiffness and pain begin to return. And by 56-hours post-treatment (if I don't take another 10mg prednisone tablet or two), the pain has returned in full-force.
Regulator
Posted
I'd like to take a minute to thank everyone who has contributed to this discussion. Its been informative, helpful and supportive, and I'm most grateful for that.
I'd also like to add one last observation regarding general practitioners (GP's) and a possible explanation for why they appear to be so reluctant to diagnose PMR without the involevement of a specialist or rheumatologist. It occurred to me last evening that if I were in-fact fortunate enough to obtain a prescription for prednisone from a local GP (not a specialist), that GP may have no real knowledge or experience with prescribing a specific dosage regimen for prednisone to someone with PMR. In other words, he or she might be willing to prescribe the prednisone, but given their inexperience with the disorder, they might not know how much of the drug should be taken daily, or how long to remain on the higher doses before rapering, etc. I can't be certain, but I suspect this is probably the most likely explanation for the reluctanace of general practitioners to help me with this.
Which leads me to a very critical question . . .
I know that members of this forum are not medical doctors and that they are not free to prescribe medications or treatment recommendations, but what is the usual treatment regimen prescribed for a typical PMR patient? In other words, if I were to somehow gain access to a prescription for 10 mg prednisone tablets (from a GP, ER doc or whomever), what would be the typical daily and long-term dosage regimen prescribed for someone that was formally diagnosed with authentic PMR? Would it be 10 mg per day or 20 mg? Would it be every day for 1-year or two? Would it be slowly tapered down from 20 mg daily to 10 mg or less? And when would that tapering process likely begin? Etc., etc.?
Elijo Regulator
Posted
I cannot for the life of me understand why andGP would not take your case. My PMR was dx by my internist who listened to all of my complaints. I had lab work the next day, he prescribed a pred. pack to start after lab work, and presto I felt better after the first day! He was NOT a theumatologist, just an internist, like a GP. There must be others on this forum who have been treated by a GP or internist? If so, let us know! After my starting dose, it was gradually tapered. I had PMR for 2 1/2 yrs and don't have it any longer. Again I was treated by an internist!
EileenH Regulator
Posted
This is written by a PMR/GCA expert rheumatologist to aid GPs in managing PMR and GCA patients who do not have recourse to a specialist for whatever reason:
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
It is a typical and fairly good approach to tapering pred in a PMR patient - although the emphaisis must be on individualisation for both dose and speed of tapering. There is a lot of advice and guidelines in the medical literature which any GP worth their salt can access even more easily than I can - though a lot of it is too fast.
This is an approach to reducing used by a lot of patients on the forums (all 3 of them) and which is being used in a clinical study in the north of England - so it has been approved by an expert rheumatologist in the field and by a local ethics committee:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
From what you have said, it sounds as if you could get away with 15mg as a starting dose and I would say that probably 3 or 4 weeks at that would be OK before reducing to 12.5mg. If that is OK then the Quick/Kirwan paper provides a good basis BUT you must be aware of returning symptoms as you reduce. However - no-one, even with all the experience in the world, can say how you will respond.
Anhaga EileenH
Posted
EileenH Anhaga
Posted
The last update on the forum "lost it". The chief moderator has complained in the hope the pinned posts will be reinstated - a week on they haven't...
I've found the simplest way to get the link is via google (this site's search function is cr*p!!) and it comes up if you search "resources post PMRGCA patient.info"
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316?page=3
I live in hope it will be sorted - I'm really quite optimistic even if I don't seem so!
Anhaga EileenH
Posted
BettyE Elijo
Posted
Yes, I was treated both times by my GP whom I had not met before and we got on fine. He did refer me to a rheumy but the department was such a shambles I told the GP I thought I'd better off with him. He started me off and then let me adjust myself. I kept a diary which he read every month or so.
Regulator EileenH
Posted
Wow! Thank you very much for these links, Eileen. This is really excellent stuff and exactly what I was looking for! Late yesterday, I contacted my GP at the VA Health system here (the one who has collected the bulk of the elevated sed rate and CRP blood test evidence so far), and I've asked him to again reconsider an immediate prescription, or alternatively, to make arrangements to see me in-person again ASAP (next week at the latest). I intend to push this issue with him very-very HARD, and I also intend to take these (and other helpful) documents with me to that visit, if such a visit becomes necessary. I'm beyond 'weary' from this fruitless, years-long journey, and I sincerely hope that he will listen to reason on this matter, once and for all.
Thanks again for everything.
EileenH Regulator
Posted
I think your problem will be to persuade them this is really PMR - but in the absence of any of the other options which the GP should actually be able to rule out via their blood tests the clinical picture in its entirety matches PMR. When it looks like a duck, walks like a duck and quackes like a duck - then that is the most likely identity!
They obviously need to be shown a few of the documents and articles on that set of links. And this one (can't remember if it is there)
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
This isn't the original - behind a paywall probably - but it summarises the findings from the Mayo Clinic group well. The doctor will be able to access the riginal I have no doubt. Pred isn't as evil as many GPs believe when it is being used properly for PMR. So Eric Matteson says - use it!
Regulator BettyE
Posted
I only 'wish' that my GP could have been this agreeable, but unfortunately, he's not. As I've said, I honestly do not know what the true nature of his reluctance is, and he's not alone (both GP's have denied me a script), but I think I'd have more luck getting heroin from either one than prednisone. Even a short-term (30-day script) is like pulling teeth. But like I said, I intend to keep pushing, because I believe the published literature, my symptoms and the clinical (blood test) results all support the high likelihood of PMR.
Regulator EileenH
Posted
Thank you again, Eileen, and yes, I believe you're right - despite the seemingly overwhelming evidence [i.e., my symptoms, the scientific literature and my clinical (blood test) results], I am likely to continue having difficulty in convincing these GP's. But I'll just have to keep pushing, because I don't really have any other choice. As I said earlier here, in this next set of visits, I intend to push hard, with the symptoms, literature, blood test results and the dramatic efficacy of prednisone, but I also intend to draw their attention to another key fact that seems to be getting lost down in the weeds . . .
About 2-3 months after those initial blood test results of 2017 showing elevated inflammation markers (i.e., ESR of 29 and CRP of 40), I starting taking low-dose prednisone from the veterinary supply that I mentioned earlier, and some 45-days after that, I had those same two blood tests again which showed reduced levels ESR at 20 and CRP at 4.8. Clearly, this demonstrated that the daily but short-term, low-dose prednisone treatment was very effective. So I would argue that if whatever I have 'isn't' PMR, then its something awfully close to it in origins, because cancers and most other unrelated causes of elevated ESR and CRP levels, do NOT respond to prednisone like that, which leads us right back to the 'ol phrase . . . "if it walks like a duck".
Elijo BettyE
Posted
EileenH Regulator
Posted
If it responds to a low dose (10mg or less) then they have no reason to refuse it. Most of the things that would respond to pred besides PMR would need 20mg or more - that is part of the reason that a moderate dose should be used for a start. PMR is characteristic in responding to 15mg or so - give the patient 40mg and all sorts of things would feel better. 10mg is barely above a physiological dose and even if they think it might be RA, low dose pred has been seen as an acceptable way of managing non-erosive RA for some years.
I can't believe they are being so intransigent. Glad they are nothing to do with me!
Regulator EileenH
Posted
"I can't believe they are being so intransigent." I know, and I almost hate to say it, because it belies the pessimist in me, but here in the U.S., I'd say . . . "follow the money".
Danrower Regulator
Posted
Reg:
Dan here, and I've used the VA for initial PMR when it was my only coverage. Also went to Mayo in Jacksonville. I've got lots of experience with the VA, and the civilian side, and had VERY similar experience as you, and think it may be policy at the VA. I now have both coverages. I would be happy to talk with you about this minefield. We're on the same page on lots of things. If you respond, we can go private or phone to expedite.
Dan
Regulator Danrower
Posted
Dan,
Thank you for your response and you've made a great point here - the resistance to making a diagnosis by VA primary care docs may in-fact be a formal or internal VA "policy" issue, rather than just personal intransigence. I'll likely never know. But as of this morning, I'm still hitting a firm brick wall with my VA primary care doc, even for just a short-term (30-tablet) supply, and unfortunately, I remain with few available alternatives. He's made a referral for me to the Rheumatology Department at a VA Hospital some 500 miles away from my home, and they've since called to confirm the appointment for October 10th (some 6-weeks away), but to my continued frustration, he still adamantly refuses to give me even a short-term (limited supply) script that would help hold me through that 45-day period of time. Its craziness!
Anyway, yes indeed, if you feel that you've got some meaningful experience and/or suggestions on how I might get around this nearly 2-year debacle ("minefield"
, either within the VA or through privately insured coverage, then I'd be more than happy to communicate with you directly via direct e-mail or phone. Just let me know when and how.
Thanks again.