on prednisone since oct, for pmr, not officially diagnosed

[arvine]

just got results from gp re physical had a week ago, everything as far as cholestrol, sugar levels, blood pressure, heart lungs etc all good, no more blood in urine, (previously lab test showed and had cystoscopy done), when originally started pred in oct gp never did baseline blood work before starting me on pred,he was the one thought i had pmr, went to rheumy, she could not confirm diagnosis , not seeing blood levels prior to pred, so now have had xrays on the right shoulder and ultrasounds ,shows some arthritis, and the mri i had done back in june 2016 showed arthritis in spine, stenosis, herniated disk , lot of back issues, so rhemy thought,,pain in glutes and hamstrings could be caused by back problems, and shoulder could be rotator cuff issue,sorry to be so wordy, but lots to explain, anyway, now although i have to stay on pred until reduced slowly, gp thinks i need to see shoulder specialist and back specialist, although i feel ok about all the routine blood work and tests coming back good, still in dark about shouder pain on and off, very frustrating and worrisome, anyone else out there have had this sort of story,

[polkadotcom]

Although my diagnosis was delayed (male GP's who didn't believe me) I had so many problems following that diagnosis that I began to feel I was on another planet where all the aliens (medical problems) were out to get me.

And I think that is where the problem lies. They were doing so many tests, scans, xrays, etc that something else was bound to turn up - and they did!

Your specialist sounds good to me - at least s/he is checking out on other medical conditions and referring you to the right consultants.

[PMRpro Ambassador]

I have PMR - but I also have myofascial pain syndrome and it causes similar problems to what you describe. The shoulder problems often lead to neck pain, the low back part leads to pain in upper legs. Higher doses of pred help both - but targeted treatment for the MPS means I manage on a lower dose of oral pred.

[Rokerman]

Hi there - Well, without benefit of blood tests, my GP had me hunting around for a walk-in clinic to have an x-ray on the right shoulder (which showed up similar results to you) and, on the basis of a probable rotator - cuff problem, referred me to a physio (NHS). Incidentally, I got a phone-call from that dept. about 6 weeks later.......

Within the space of a week, I couldn't raise either arm, use the shower, get dressed, get out of bed, sleep for more than an hour or two, sit in the car etc, etc, so I knew that a proper diagnosis wasn't going to come my way any time soon - so I was persuaded by my wife to stump up the cost of a private specialist and within 24hrs was on a course of Pred. It took about 2 weeks to get up to 20mg dose which enabled me to regain all functions (April 2016) and have now tapered (DSNS) to 7mg. I can't over-emphasise what a relief it was to get a diagnosis and a treatment plan for this horribly debilitating condition! I can sympathise completely with your worried state!

I think the received wisdom on this forum is that if the Pred relieves your symptoms - you've probably got PMR. Be prepared for the long haul and don't think you won't get there in the end.

Best Wishes

[arvine in reply to Rokerman]

yes rokerman, i think that is my biggest concern, the unknown is stressful,now my gp after seeing results of shoulder xray and ultrasound, 2nd time since sept, that i should see a shoulder specialist , can,t see what,s really causing pain(although it has decreased quite a bit since originally seeing him in oct), and seems rheumy is suggesting rotator cuff problems, also, after looking at an mri report , i had mri done last spring, by another dr, who runs a decompression clinic , thinks i should see a back specialist ??? have issues, arthritis in spine, herniated disk stenosis etc, because both he and rheumy, are suggesting all my pain has come from these areas, back and shoulder, but haven,t actually confirmed, not pmr ?? very frustrating