Happy to have some relief, finally.

[PMRnewbie]

It's amazing how fast PMR can totally change your life, I had trouble getting up, sometimes even rolling over in bed was impossible without help. Finding a rheumatologist wasn't easy, we only have one in the town I live in he isn't taking new patients. One doctor sent me an appointment for 6 months out. Finally found and appointment, 21/2 drive to get there, but only took 2 weeks to get in. The ironic thing, I am a a infusion nurse for a rheumatologist. My office doesn't treat staff, so all she could do was look at my lab work stress that I really needed to see someone a soon as possible

[PMRpro Ambassador]

Good to hear there's an improvement. While I can see the thinking behind not treating staff - under the circumstances it seems rather unfortunate. I have to say, my husband and I did benefit greatly from the NHS being rather more relaxed about it - he owes his life to his colleagues and being treated in his own hospital meant he was able to work again even while still having treatment! You'd rarely have to drive that sort of distance to the next specialist either.

Will your rheumy boss at least answer questions for you? Do PCPs never manage PMR in the US? I keep meaning to ask!

[PMRnewbie in reply to PMRpro]

I work for a small private practice, total staff of 9, not a hospital so there would privacy issues with my information. She answers any questions I have told me what labs to draw to help get the correct diagnosis, my RA, and ANA are both negative which made getting a rheumatologist to see in the first harder because of insurance reasons. My PCP is very knowledgeable but was at a loss as to how to go forward as my symptoms to worse and the pain and stiffness got to where I could hardly walk.

[PMRpro Ambassador in reply to PMRnewbie]

Oh yes - I do see the problems associated with management by your colleagues in a small office-based practice. Let's hope it all goes well and you rarely have to have your day trip to see the rheumy! Or is there another more pleasant reason for going there? Like a good restaurant or other place to visit? I have to travel about 50 miles for a dexascan or other reason to go to the main regional hospital - but it is a delightful small city!

[Chihuahua1]

I would have thought that although the local Rheumy wasn't taking on new patients, being a nurse to a rheumy, although she wouldn't treat you she could have perhaps tried writing to the local one to try and get you in there as a common professional courtesy.That's how it used to work when I was young, but obviously things have changed dramatically since then

[PMRpro Ambassador in reply to Chihuahua1]

Yes, that happened to me when I was pregnant with No 2 when we lived in Germany - my paediatrician called the best gynae/obs person in the area who also wasn't taking on new patients. No problem - and it really was a good thing as I had a dodgy time.

[PMRnewbie in reply to Chihuahua1]

Sadly this rheumy is a bit of a butt. My PCP didn't want to do the referral to him in the first place because he turns down so many patients. My LPN called his nurse and asked if there was and any additional paperwork that might help, she asked he said no. My rheumy called him, he still said no. I think at that point he did it because he was angry getting called. Wouldn't want to deal with someone like that anyway or trust them with my well being.

[1Purplecrow]

Just curious here, but given the circumstances, and presuming you have a bit more knowledge about PMR than a lay person, could you be treated by a GP?

I have come to question the need for a Rheumy, with my garden variety PMR

(Not GCA!!!)

My GP diagnosed, and referred me to the Rheumy, but I have only seen her three times, and not for a year. My GP has tracked my progress all this time. I only call the Rheumy office for refills on pred.

Again, just curious.

I do recognize that regular visits with with a "specialist" may give reassurance, etc., but in all seriousness , with this PMR being a work In progress, not even the specialists seem all that up to date...witnessed by the fact that we often are encouraged to take them printed copies of recent scientific literature.

Sometimes I wonder if this is a bit like the story "The Emperor's New Clothes".

anyway, good luck to you, you have come to the right place for ongoing reassurance and answers, to supplement the rest of your treatment. Regards, Jerri

[PMRnewbie in reply to 1Purplecrow]

Sorry for taking so long to get back to you. I think it depends on a case by case bases and how comfortable you are with your PCP. My case is more complicated then just simple PMR, I have RA and several other medical conditions that are best treated by a specialist. I do feel that it's rather poor management on the part of the rheumatologist to fill scripts for more than a year without seeing, even if you are getting regular blood work done at your PCP to keep a check on your inflammation, bld glucose and things like that.