Fumbling in the US for a "diagnosis"

Pam,

I had my first bout with PMR at 53, so it is not rare to fall outside the guidlines. Lots of tests to go through to find that a relatively simple "diagnostic tool" is low dose prednisone for a short time. Usually, the results are immediate and miraculous,if your symptoms are PMR. There is a wealth of info here, and better tham many uninformed USA Doctors and Rheumys. 

By the way, took my Doctors 8 weeks of my suffering ( GP and Rheumy) to finally respond to my self diagnosis after reading about the specific symptoms. I  believe that PMR is more prevalent in northern Europe? So, perhaps more accurately diagnosed there. Apparently the standard  initial low dose prescription is 15 mg prednisone per day.

My sed rate 2 days ago was 49 which is considered elevated. Now that is with me being on prednisone for 6 weeks. I had lived with an elevated sed rate

For over a year before I knew what was going on. I also had a low-grade fever during that time but only in the morning.

All of my aches and pains were being blamed for other things for example tennis elbow bad knee holding my phone too

much when my hands hurt. But it was when I had pain all over that I saw my GP about it and ran all the tests like your GP

did. So you just need a new rheumatologist not a CT. The age thing is fiction. Old information. The rheumatologist you saw

Is out of date on PMR.

There are many who are under 50 and have PMR.  That being said, testing for things they can test for is the way they rule everything else out.  Maybe, since your Dr. has said is isn't familiar enough with PMR you could print some info on how a short diagnostic tool of prednisone would help diagnose if it is.

I just had a CT scan today so my rheumatologist could rule out tumors. The last scan I had saved my life - some of the inflammation was caused by a perforation in my colon which would have killed me within 48 hours, I'm told.I've had all the blood tests you mentioned, too, and I believe I have PMR, but the new Dr. needs to see for herself, I guess. Btw, I'm 69 years old, but was told it's most common in women over 50 - that's just a trend, though, shouldn't be applied to you as a diagnostic, imo. I'd suggest getting the scan, unless it's a financial hardship. I'm on Medicare, which covers it.

I chuckled when I saw your latest specialist prescribed all those tests including a CT scan - and told you to get a pair of Birkenstocks!  Guess he's really trying to cover all the bases!  On a more serious note, you do need to deal with the inflammation, no matter the cause, as long term chronic inflammation can (don't say it will) lead to further illness, including possibly even cancer.  Long term prednisone comes with its own delightful collection of side effects but they can usually be managed very well by living as healthily as possible, and a low dose of prednisone which most people with PMR are on for at least a year as they taper, sometimes much longer, is usually little cause for concern.

Maybe your GP would appreciate having a look at the Bristol paper which you can access through this site:

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

Thank you - everyone.  Your input so far has really helped me.  I think my main issue with was the rheumy - he seemed sort of dismissive.  The radiation dose with a CT of that size for someone my age is not insignficant.  If my "second opinion" tells me is medically necessary and that the benefits outweigh the risks - I will do it for sure - scary or not,  I am grateful that my GP admits what he doesn't know but definitely see the value in providing him with additional information as you all suggested.  I guess we are sort of at a weird crossroad where today's patient is better informed than ever before and not all doctors are keen on that fact.  Thank you, all, for reminding me that I am my own best advocate.  I am very glad I found you.

You did the right thing starting a new post - your other one will get lost. I had only just turned 51 when I developed PMR.

If it looks like a pig, smells like a pig and behaves like a pig, it's probably a pig. lol

Read everything you can on here - you will go into your Dr most probably knowing more than they do!

The only thing that really bothers me in your post is the:

"I am just concerned I am going to have to deal with this for the next four years UGH! "

This is a contrary disease - you may have a 'mild case' which disappears never to be seen again in a year or two, or you may have a more serious case which hangs around for 10 years or more (ask EileenH about that!).  Studies and anecdotal evidence suggest that it will last at minimum two years and most likely hang about for up to 6 years. It also suggests that trying to reduce prednisone too quickly in the first year or so can actually delay remission - and remember, that remission is just that - PMR will probably never leave you entirely.  Not the best news, but not the worst - I would suggest that some cancer diagnosis would be much, much worse!

This is cut and past from a post by EileenH (thanks Eileen!!) from the "age of diagnosis' post to which you refer:

If you suffer from an autoimmune disorder then the propensity for it to reappear is always there for the rest of your life. PMR is only the name given to the symptoms of an underlying autoimmune disorder and for 75% of the population who develop it it lasts for between 2 and 6 years before the activity of the immune problem burns out - and you go into remission. There are different ways of achieving remission, the state of having no signs or symptoms of the disease as measured by accepted means - it can be drug-induced, as while we are taking pred, or it can be what I would call "real" - the disease has burnt out, for the moment at least. 

But you appear to accept that it hasn't necessarily gone away when you say "with a more than average chance of getting it back." . Some experts are of the opinion that when it burns out in under 2 years then there is a higher risk of a relapse at some later date. I know a few people who have had it twice - and all of them say the second episode was totally different to the first in every sense, presentation and response to and journey with pred.

Other experts are beginning to realise that PMR probably does not come in just one version - and that would probably account for the 3 fairly clear groups: short term sufferers for up to 2 years, medium term sufferers for 4-6 years and longterm sufferers for much longer, even sometime pretty much for life. It would be very helpful if doctors cold get their heads round that - then they might be less insistant on getting patients off pred before they are ready and able

Pamela there is no test that you can take to point to PMR direrctly.  The diagnosis is done by elimination of any other reason for inflammation, and that is why it is necessary to take CT scan. The radiation you will be exposed is not really that high with modern scanners. Exam is relatively quick, and painless.

Hi folks - thanks again for all your feedback.  I have decided to go through with the CT scan, in an abundance of caution, and after calling JH.  They told me there would likely be a delay in ordering and obtaining tests and to go ahead and get the scan.  I neglected to mention that my Lyme AB IgM panel was equivocal/high for the initial test with a subsequent negative Western Blot (one positive WB band - IgG 41).  GP is concerned about going down the Lyme "rabbit hole" as he called it as he feels there is more of a connective tissue or rheumatological explanation.  Rheumy told me this was a false positive and inconsequential.  Rheumy also did a CMP which was normal.