1. < Polymyalgia Rheumatica (PMR)
Profile picture for terryartist

PMR: Please suggest important first questions to ask rheumatologist

Posted by terryartist @terryartist, Apr 7 4:17pm

I was diagnosed 3 months ago by my GP after 2 months of pain. I am on 15 mg prednisone which initially took most of my pain away. Now I find everything creeping back but still not nearly as bad as it was. Fatigue is really crazy as well as hand and foot cramping. I do not know what is prednisone… what is because I am trying to do to much, I just am very afraid of pain returning full on. I want to make this first meeting as informative and productive as possible . What are some important questions that I may not have thought about but should be asking? Thank you !

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

Profile picture for terryartist
terryartist | @terryartist | Apr 8 10:53am
In reply to @pdxmac "I'd start with the communication protocols. You will have lots of questions as you start to..." + (show)
Profile picture for pdxmac @pdxmac

I'd start with the communication protocols. You will have lots of questions as you start to live with your condition and will want to know the best way to get answers from the office. I would also want to make sure we're on the same page in terms of levels of acceptable pain, attitude to taking new medications. I'd also ask for recommendations on the best place for you to do your own education. There's a lot of conflicting info out there so it will help to know what your doctors are relying on.
I hope this is helpful and good luck to you

Jump to this post

@pdxmac thank you so much! I like these question regarding office protocol and regarding the best place to get more education on PMR. This will be very helpful. Thank you!

REPLY
Profile picture for ropnrose
ropnrose | @ropnrose | Apr 8 7:21pm

It is helpful to keep a daily journal. It helped me with questions for my rheumatologist during appointments. I would print the journal out, with my questions and send it to her before my appointment. I was fortunate that my rheumatologist's office used texting. I could always text questions and would get responses within a few hours.

REPLY
1 reply
Profile picture for terryartist
terryartist | @terryartist | Apr 8 10:26pm
In reply to @ropnrose "It is helpful to keep a daily journal. It helped me with questions for my rheumatologist..." + (show)
Profile picture for ropnrose @ropnrose

It is helpful to keep a daily journal. It helped me with questions for my rheumatologist during appointments. I would print the journal out, with my questions and send it to her before my appointment. I was fortunate that my rheumatologist's office used texting. I could always text questions and would get responses within a few hours.

Jump to this post

@ropnrose
Good Idea. I hope my rheumatologist will be as accessible as yours! Thank you.

REPLY
1 reply
Profile picture for tweetypie13
tweetypie13 | @tweetypie13 | Apr 9 8:33am
In reply to @terryartist "@ropnrose Good Idea. I hope my rheumatologist will be as accessible as yours! Thank you." + (show)
Profile picture for terryartist @terryartist

@ropnrose
Good Idea. I hope my rheumatologist will be as accessible as yours! Thank you.

Jump to this post

@terryartist reminder, you drive your own bus and the navigator (Dr) could use a push sometimes, …..as in, be persistent

REPLY
Profile picture for stonewheel
stonewheel | @stonewheel | Apr 9 9:03am
In reply to @csimmonds "These are great questions to ask. It has been over a year since my diagnosis and..." + (show)
Profile picture for csimmonds @csimmonds

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?

Jump to this post

@csimmonds
(may need to switch doctors)
Yes.

REPLY
Profile picture for pdxmac
pdxmac | @pdxmac | Apr 9 11:33am

See The last listing in today's offerings for a novel approach. It is just titled prednisone.

REPLY
1 reply
Profile picture for terryartist
terryartist | @terryartist | Apr 9 12:58pm
In reply to @pdxmac "See The last listing in today's offerings for a novel approach. It is just titled prednisone." + (show)
Profile picture for pdxmac @pdxmac

See The last listing in today's offerings for a novel approach. It is just titled prednisone.

Jump to this post

@pdxmac thanks that was an interesting read.

REPLY
Profile picture for cwbf
cwbf | @cwbf | Apr 9 1:14pm

Adding to what others have suggested:

You might find out whether you can ask questions and report problems/progress by email or on a portal. My board certified rheumatologist at Vanderbilt answers my questions/concerns the same day by portal. That is incredibly helpful and reassuring.

REPLY
Profile picture for tatiana987
tatiana987 | @tatiana987 | Apr 10 3:17pm

If someone close to me asked the questions you ask, having lived through PMR and come out fine, I say go now to Urgent Care for Pain, to a pain management expert doctor, hope they give you a Prednisone (or similar drug) INJECTION, not an oral med. Then see the rheumatologist. This is what I would do for myself, if I had PMR again. My opinion is that dealing with the rheumatologist while in less pain works better. But we are all different and who knows whether you would react as I did. .

REPLY
1 reply
Profile picture for terryartist
terryartist | @terryartist | Apr 10 4:20pm
In reply to @tatiana987 "If someone close to me asked the questions you ask, having lived through PMR and come..." + (show)
Profile picture for tatiana987 @tatiana987

If someone close to me asked the questions you ask, having lived through PMR and come out fine, I say go now to Urgent Care for Pain, to a pain management expert doctor, hope they give you a Prednisone (or similar drug) INJECTION, not an oral med. Then see the rheumatologist. This is what I would do for myself, if I had PMR again. My opinion is that dealing with the rheumatologist while in less pain works better. But we are all different and who knows whether you would react as I did. .

Jump to this post

@tatiana987 thank you. I did see rheumatologist today and have been on prednisone for three months and so I can say that I totally agree with you. Had I been in the pain I was in three months ago it would have been rationally impossible to follow the conversation I was able to have today while I was in limited pain,

REPLY
View MoreView Less
Please sign in or register to post a reply.