PMR: Please suggest important first questions to ask rheumatologist

These are great questions to ask. It has been over a year since my diagnosis and I still have many questions. My rheumatologist provided no information and didn't seem to appreciate being asked questions. I got very brief answers. I have looked to others and this group for information. (may need to switch doctors) I am tapering off prednisone and doing fairly well I think. Some pain but it goes away. Still need Tylenol. I am going to use these questions as I move forward. I still don't know if there is a definitive diagnosis for PMR. Is it mainly from symptoms and some lab?

I really identify with your comments. I’ve been diagnosed with PMR last Summer after a period of trauma and change in circumstances. I was then put on 15g Prednisone and felt immediately better. But trying to taper off this medication is quite complicated I am now on 7mg over several months and have experienced really low moods and continued probs with shoulder and hip, just enough to annoy! I also have had RA for many years and am on Methotrexate successfully for this condition. It’s frustrating that my Drs surgery deals with the PMR and a rheumatologist at hospital the RA and I feel that’s not helped. As you say there is no definitive test to completely prove PMR and I want to stop taking Prednisone quicker than I’m at right now as long term use is bad. I wish you well and that things will be smooth going forward. It’s so good to share with others and realise there are many folk on this weird journey and we’re not alone. Best wishes 🤞

@buddysmum And I wish you well…..I am another one like others before you who has been totally frustrated with the “unknown” and exploration on our own. I was stuck at abt 8mg pred when I finally got on Kevzara. Big success, self tapered off Pred by 3 1/2 months when the Kev fully kicked in, and totally off Kev by 1yr. Good luck.

@tweetypie13
Are you now off Kevzara?
How long did you continue Kevzara after stopping Prednisone?
Lastly, did you taper off of Kevzara, or just stop after your last regular injection?

I was going to PM you but felt your reply would help others as well. I’m not trying to hijack this thread either as this might be a question to ask a rheumatologist; because I would ask how soon can I start taking Kevzara or a similar biologic, since Prednisone comes with so many bad side effects..

@csimmonds there is no definitive test to "prove" you have PMR. PMR is a default diagnosis, meaning if it is not several other problems that a Rheumy treat and you have pain in shoulders and hips and possibly your inflammatory marker are elevated then a Dx of PMR is likely. For me that is one frustrating part is no one knows for sure if it is only PMR or PMR plus something else.

I really identify with your comments. I’ve been diagnosed with PMR last Summer after a period of trauma and change in circumstances. I was then put on 15g Prednisone and felt immediately better. But trying to taper off this medication is quite complicated I am now on 7mg over several months and have experienced really low moods and continued probs with shoulder and hip, just enough to annoy! I also have had RA for many years and am on Methotrexate successfully for this condition. It’s frustrating that my Drs surgery deals with the PMR and a rheumatologist at hospital the RA and I feel that’s not helped. As you say there is no definitive test to completely prove PMR and I want to stop taking Prednisone quicker than I’m at right now as long term use is bad. I wish you well and that things will be smooth going forward. It’s so good to share with others and realise there are many folk on this weird journey and we’re not alone. Best wishes 🤞

Thank you to everyone who made suggestions. I saw the rheumatologist today and the conversation I was able to have with him and his “fellow” was much more in depth and informative than it would have been had I not had your help 😉

@terryartist, my question about the rheumatologist managing your PMR may be redundant given your post!