First meeting with Rheumatologist for PMR, need suggestions

Appreciate finding this blog. I was diagnosed with PMR 1 month ago by my PCP after having symptoms for 6 months.
She began me on Prednisone 15mg . I have my first appointment with Rheumatologist tomorrow. Does anyone have suggestions on some questions I should be asking him? I'm a little overwhelmed. Thanks.

I would ask him what he thinks of your prior lab results.
Is my case much like the usual he sees.
What side effects should I be aware of.
Do I need to prevent osteoporosis.
How much should I exercise.
What can I take for pain.
Does my diet require some changes.
How can I communicate with you between visits if I have questions.
If I can’t lower my dose is their alternative treatment.
How do I get refills. Does your office have My Chart.
Will you report visit summaries to my primary.
Do you suspect any other underlying conditions.
Will I be seeing you regularly for management or my primary
Do you suggest any educational resources.?
It may be a good idea to ask the front desk how busy they are and
the best way to communicate if you have problems.

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@gingergirl24, how did your appointment go? What are next steps for you?

Thanks for asking! Really liked the Rheumatologist, straight forward and answered all my questions. Decreased my Prednisone from 15mg to 12.5mg × 2 weeks then decrease to 10mg. So far I am doing well with decreased dose. I am grateful for this blog and reading about others experiences and advice.

I have been on 15mg of prednisone for weeks and I am much improved. I am not symptom free, still achy in shoulders. Should I be entertaining the idea to ask to increase the dose to say 20? My inflammation rate is down to 9 from 42 so there is improvement. In conversation with my primary about this. Thanks

I thought the same thing as you after my first few weeks on 20 mg per day but my rheumatologist has only ever put me on lower doses. Reading these wonderful posts has given me much more understanding of what is happening, and I see that the pain, especially in the morning, is normal. It had been almost 4 Mos on Prednisone and I am now on 10 one day and 12.5 the next. I've added Methotrexate weekly, so we'll see what that does. Good luck!

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.

Really happy to hear that you have a rheumatologist that listens and works with you @megz. Looking forward to hearing your next report!

Why 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.

It 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. 🙂