Cannot Find A Doctor That Knows PMR

i would like to know of a DR. in GA USA, that can really help a PMR patient. I have not been able to find one. Except for one, and he is retired, none have done much good. Every doctor I see looks at me like they just don't understand, and then do nothing that helps.

[HeronNS]

Do you belong to any social media other than this? You could put a request for recommendations on Facebook, for example. But that would only work if you belong to FB and have a critical mass of friends who will share with others to get the word out. Also, isn't there a vasculitis foundation? I wonder if they have a means of providing recommendations or of letting your plight be known? Hopefully others on this forum will have some suggestions.

vasculitisfoundation.org/

[Hidden in reply to HeronNS]

I am not on Facebook, but I will try it.

[HeronNS in reply to Hidden]

It won't really work unless you connect with enough people that the extended circle is large enough to net the information and contacts you're looking for. But as PMR is nowadays considered a vasculitis you may be able to get some direction from the Vasculitis Foundation. Good luck!

[Mikb]

If you are on Facebook, there is a GCA/PMR group. There are a lot more Americans on that site than this one, and someone may be able to help you. Good luck.

[Hidden in reply to Mikb]

Thanks for the suggestion. I will get on Facebook in a few minutes.

[Mstiles in reply to Mikb]

Hi Biz mike,

I am in the US and it would be helpful to see what the FB group offers bud I starved PMR/GCA on FB and it didn’t turn up that group. Any tips?

[HeronNS in reply to Mstiles]

Just look up polymyalgia rheumatica. At least one of the groups which pops up is in the US and has 1.8 thousand members. It appears to be active, getting a handful of posts a day.

[Mstiles in reply to HeronNS]

Thanks heron

[GerriMc in reply to Mstiles]

m.facebook.com/pmrgcauk/

Try this link.

[Mstiles in reply to GerriMc]

Thanks Gerri

[HeronNS]

Hey, maybe the PMR-competent retired doctor should be invited to make a presentation or host a workshop on PMR and GCA for his former colleagues....

[Mikb]

Just checked Facebook. They have separate groups for GCA and PMR. I am in the GCA group but I typed PMR in the search box at the top and found groups listed there.

[xdbx in reply to Mikb]

Some FB groups may have lists of recommended practitioners so it’s worth checking.

[yogabonnie]

Hope you have had some luck. You could also bring a print out of some of the Medical Posts from the mayo clinic or reports saying exactly what GCA/PMR it is and give it to your doc. I hope you have started the prednisone.!!! Sorry you are in this situation.

[4840 in reply to yogabonnie]

I did a print out of the findings from the Mayo Clinic about the length of PMR and prednisone intake and emailed those to my GP and Rheumy. It did help, but most of all a print out about the helpful SLOW reduction of prednisone I found here on HealthUnlocked. It convinced my Rheumy finally that even 1/2 mg of prednisone a month is needed to lower the dosage.

[LarryLeek]

Hi hidden. I’m not sure what part of Ga. you are from but IF you are anywhere close to Anderson, SC, I HIGHLY recommend my Rheumatologist, Dr. Amir Agha. He’s been great in dealing w/ my PMR. If you are too far from Anderson, maybe you should give their office a call & see if they can recommend anyone near you. Their phone # is 864-716-6030. I hope you find someone....

[cdenoncourt]

If you live in south GA (Brunswick area), it may be worth your while to drive to Jacksonville, FL to the Mayo Clinic there. You will get excellent help there. You can request an appointment online at mayoclinic.org. No referral needed.

[daworm]

You may have to go to a bigger regional health center...I would love to get over to Mayo’s....

[daworm]

medicinenet.com/polymyalgia...

[TooSore]

I went through a well known teaching hospital to find mine and have had good luck.