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First meeting with Rheumatologist for PMR, need suggestions
I have really appreciated following all the discussions on this site, it’s been super informative and helpful!
I was diagnosed with PMR in mid May and I’m on 15mg of prednisone. I am meeting with a Rheumatologist at the end of the month and want to be prepared. I would love some guidance on what kind of questions I should ask and anything you want to share that will help me get the most from this visit. Thank you!
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There is another similar discussion that you might want to scan through to see what others have shared.
-- First meeting with Rheumatologist for PMR, need suggestions: https://connect.mayoclinic.org/discussion/first-meeting-with-rheumatologist-need-suggestions/
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1 ReactionThank you, John!
What is my added risk of related problems such as
additional cardiovascular problems. Should I have a risk
assessment. Do you suggest a Dexascan at onset if it
looks like probable long term prednisone.
How much risk do you think for Giant cell arteritis.
Am I due for an eye exam?????
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2 ReactionsI would suggest you cover how the doc would prefer to interact in certain situations. Some of those are
* when to call if you suspect you have an infection (if you are on an immunosuppressant drug )
* guidelines for scheduling procedures that could introduce risk of spreading infection - such as pulling abscessed tooth
* how to react in a sudden increase in pain (a flare)
* medication side effects you should respond to or make your doc aware of.
* other clinical changes your doc would want to be aware of
Good luck!!
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3 ReactionsThank you!
I'm probably not the right one to ask this question because I liked my rheumatologist but he moved to Florida in March and the clinic he referred his patients to can't see me until September. There's no others close to me that are in network for my insurance. Anyhow, after I thought about it, I came to the conclusion that I don't really need one. I was a nurse for 42 years and able to proactively manage most of my own health care. After months of pain and sickness and 3 different doctors, I finally diagnosed myself with PMR, which was borne out by inflammation markers and symptoms. My PCP and his nurse are wonderful about listening to me and acting on my input. So, I'm just going to stick with them for the time being. Good luck to you!
My first rheumatologist appointment was today, two years after starting on prednisolone for PMR. He wonders if the PMR diagnosis was correct, as I told him it took a couple of weeks on 15mg to be completely painfree in the mornings, and only after I split the dose. He pressed the joints affected by PMR for pain, and there was none. My original pain was more in the soft tissue surrounding the joints rather than the joints themselves.
He has ordered more blood tests to see the current situation, and xrays of my hands and feet, the hands because there was severe pain there originally and the feet because there are painless new hard nodules on the big toe joints. I'll be interested to see what is found.
He said I was making good reduction progress (currently 4mg) and that I should keep reducing the same way. It was encouraging to hear him say I'm "doing everything right". He wants to see me in four months when I should be at 2mg. He expects that if there are going to be problems, it could be around then. It was a good appointment and I have confidence that he is listening and will be a good partner in treatment.
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2 ReactionsReally happy to hear that you have a rheumatologist that listens and works with you @megz. Looking forward to hearing your next report!
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1 ReactionWhy did your rheumatologist doubt if PMR was the correct diagnosis?
PMR is a diagnosis of exclusion when nothing else explains your symptoms. If there are doubts about the PMR diagnosis, I would think a doctor would suspect something else. A "fast response" to Prednisone or a "not so fast response" isn't much to go on for making a PMR diagnosis or changing the diagnosis.
I raised my own doubts about my diagnosis of PMR after it persisted for years. I thought PMR was supposed to burn itself out in a couple of years. At one stage, I didn't think I had PMR anymore and "tactfully accused" my rheumatologist that she only prescribed me Prednisone because she thought prednisone was what I wanted. I'm glad my rheumatologist was very patient with me because I wasn't patient with her sometimes. I just wanted to be done with Prednisone after 10 years. My rheumatologist said PMR was "refractory" in response to my complaints of being on Prednisone for so long.
Now I'm on Actemra and PMR is still my "primary diagnosis." However, my problem has been called "systemic inflammation" and a "full range of rheumatology problems " in the past.
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3 ReactionsIt was an hour long appointment which I only summarised. There were other things he mentioned, like a slight rheumatoid factor at the last bloods where in the beginning there was none. He wants to know if that and a few other things have changed. As has been discussed here at times, things can change over time, leading to a different diagnosis. In my mind, it doesn't necessarily mean the first diagnosis was wrong. There are sometimes other things going on as well, as you know.
My challenge now is to keep this reduction going smoothly, as I told him I'm not interested in methotrexate, which he mentioned as a possibility if there is a second flare. I'm trying to keep an open mind while being firm on a few things. Cheeriness and social graces are not my strong point at appointments either. 🙂