Is it a good idea to change rheumatologist?

Posted by andirae @andirae, Jul 8 2:29pm

I am frustrated with my dr. I feel they ignore me and seem to not really care. I message them with questions but I generally get 1 of 3 responses.
No answer
Wait until your next office visit. (It’s 3 weeks)
Go see your pcp
How can I manage my treatment and symptoms when they don’t help? I’m not the expert and need some answers but they don’t help. Even at a visit I leave frustrated.
Is it tough to restart with someone else?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@andirae, you might find this related discussion helpful:
-- Changing doctors …: https://connect.mayoclinic.org/discussion/changing-doctors-1/

It's important to have confidence in your care. Do you have choices available to you where you live?

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Thank you.
There are a lot of choices. No idea how to really pick one that’s right.

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If you and your rheumatologist are not a good fit it can affect your progress
if you need long term management. Keep in mind there can be shortages of
specialists in some areas and long waits for referrals. Do you have a primary
physician to confer with about other options? Do you have access to your
visit summaries and labs.
I lost my first rheumatologist to family needs and her job change. My second
rheum gaslighted me when she was stuck on her diagnosis and disregarded
my history and symptoms. The third young woman rheumatologist has been
wonderful and very thorough and communicative. All three were well trained.
I’m thinking you may continue to find support here with other patients’
experiences.

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Rheumies in the Dallas area are in high demand. So don't be surprised if the wait is long to get in with one. Your PCP is a good reference as is online searching
There are sites that rate doctors and post patient comments.
My first rheumatologist dropped back from practicing when COVID hit and I had just seen her. It took me 90 days to see my second one. She is good but not a perfect fit. However her NP is great and as a team I think it's a great match.

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I have been following Rheumatology webinars for Rheumatologists for the last 11 months trying to learn as much as possible about PMR and there is a standard protocol they mostly follow. Depending on the CRP, hit it with Prednisone around 20mg for a couple of weeks then start the taper. If the PMR continues to flare and CRP is still higher than expected, start them on a strong immunosuppressive as well. There's 2 or 3 cheap drugs they try out first (lots of potential side effects, the big one is infection). If the CRP is still not coming down, they apply for access to the expensive biologics. All these drugs come with a myriad of significant side effects but the Rheumatologist is generally not interested in hearing about them and only works off your monthly blood results. They dont treat you for the problems the drugs cause, that is the role of your PCP, however they are supposed to be the experts on dosage adjustments. I have found the need to become my own expert through the advice and information from this forum and ongoing learning.

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@seniormed

If you and your rheumatologist are not a good fit it can affect your progress
if you need long term management. Keep in mind there can be shortages of
specialists in some areas and long waits for referrals. Do you have a primary
physician to confer with about other options? Do you have access to your
visit summaries and labs.
I lost my first rheumatologist to family needs and her job change. My second
rheum gaslighted me when she was stuck on her diagnosis and disregarded
my history and symptoms. The third young woman rheumatologist has been
wonderful and very thorough and communicative. All three were well trained.
I’m thinking you may continue to find support here with other patients’
experiences.

Jump to this post

I found that the hours of research online for PMR various sites was worth it. I have not had much help on handling the flare up other than blood tests and medication. In the early stages he didn't seem to have heard of the dietary restrictions at all. Now I have no rheumatologist at all as our hospital closed their rheumatology department leaving their patients no help closer than 35 miles away. Fortunately I am beginning to come out of the after effects of both prednisone and the flare up and have the learnings from several rehab sessions to call on. But not a situation I am happy with. I thank the heavens for having found this site as it's been so much help and encouragement.

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