1. < Polymyalgia Rheumatica (PMR)

First meeting with Rheumatologist, need suggestions

Posted by jillsteindler @jillsteindler, Oct 12, 2022

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!

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

Mentor
John, Volunteer Mentor | @johnbishop | Oct 12, 2022

@jillsteindler, It is a great idea to be prepared for your upcoming appointment with a rheumatologist. You might find the following information helpful for planning your conversation with the rheumatologist.

-- Tools For the Visit:
https://patientrevolution.org/visit-tools

Some questions that come to mind for me are:
-- Do you have any suggestions for lifestyle changes I can make to help manage the PMR symptoms?
-- Are there any exercises I should do or avoid?
-- Do you have any suggestions for a tapering plan if the pain isn't controlled by the current dose of prednisone or I have a flare up?
-- What do you think about keeping a daily log to track PMR pain and prednisone doses?

I'm sure other members can share some questions also. Good luck on your upcoming appointment and I hope you can let us know what you find out.

REPLY
3 replies
jillsteindler | @jillsteindler | Oct 12, 2022
In reply to @johnbishop "@jillsteindler, It is a great idea to be prepared for your upcoming appointment with a rheumatologist...." + (show)
@johnbishop

@jillsteindler, It is a great idea to be prepared for your upcoming appointment with a rheumatologist. You might find the following information helpful for planning your conversation with the rheumatologist.

-- Tools For the Visit:
https://patientrevolution.org/visit-tools

Some questions that come to mind for me are:
-- Do you have any suggestions for lifestyle changes I can make to help manage the PMR symptoms?
-- Are there any exercises I should do or avoid?
-- Do you have any suggestions for a tapering plan if the pain isn't controlled by the current dose of prednisone or I have a flare up?
-- What do you think about keeping a daily log to track PMR pain and prednisone doses?

I'm sure other members can share some questions also. Good luck on your upcoming appointment and I hope you can let us know what you find out.

Jump to this post

Thank you John! I appreciate the feedback so much! I will also check out the link you shared. 🙏

REPLY
christi48 | @christi48 | Oct 13, 2022
In reply to @johnbishop "@jillsteindler, It is a great idea to be prepared for your upcoming appointment with a rheumatologist...." + (show)
@johnbishop

@jillsteindler, It is a great idea to be prepared for your upcoming appointment with a rheumatologist. You might find the following information helpful for planning your conversation with the rheumatologist.

-- Tools For the Visit:
https://patientrevolution.org/visit-tools

Some questions that come to mind for me are:
-- Do you have any suggestions for lifestyle changes I can make to help manage the PMR symptoms?
-- Are there any exercises I should do or avoid?
-- Do you have any suggestions for a tapering plan if the pain isn't controlled by the current dose of prednisone or I have a flare up?
-- What do you think about keeping a daily log to track PMR pain and prednisone doses?

I'm sure other members can share some questions also. Good luck on your upcoming appointment and I hope you can let us know what you find out.

Jump to this post

I would love to hear how your first appointment goes and how you felt about the Dr. Also, love the suggested questions - especially about lifestyle changes and exercise. The answers you get to those questions should give you a good idea of how competent and knowledgeable the Dr. is as well.

REPLY
jillsteindler | @jillsteindler | Oct 14, 2022

Hi John,
another question. I was diagnosed with breast cancer, had surgery this past Monday and found out it was positive yesterday. They removed it successfully. I don't think I need radiation at this time but wondering what the effects might be on my PMR if I had to go that route? Perhaps I should pose this as a separate question on this site?
Jill

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 14, 2022
In reply to @jillsteindler "Hi John, another question. I was diagnosed with breast cancer, had surgery this past Monday and..." + (show)
@jillsteindler

Hi John,
another question. I was diagnosed with breast cancer, had surgery this past Monday and found out it was positive yesterday. They removed it successfully. I don't think I need radiation at this time but wondering what the effects might be on my PMR if I had to go that route? Perhaps I should pose this as a separate question on this site?
Jill

Jump to this post

Hi Jill @jillsteindler, I'm so glad to hear the breast cancer surgery was successful. I know it can't easy when you have the PMR active and have other conditions to deal with. Hoping you won't need to have the radiation treatments. There are a lot of active members in the Breast Cancer group and you might want to browse through the list of discussions for other related questions you might have:

-- Breast Cancer: https://connect.mayoclinic.org/group/breast-cancer/

I wonder if your rheumatologist might have any information on possible effects of radiation treatments on PMR?

REPLY
vandyms1974 | @vandyms1974 | Oct 15, 2022
In reply to @johnbishop "@jillsteindler, It is a great idea to be prepared for your upcoming appointment with a rheumatologist...." + (show)
@johnbishop

@jillsteindler, It is a great idea to be prepared for your upcoming appointment with a rheumatologist. You might find the following information helpful for planning your conversation with the rheumatologist.

-- Tools For the Visit:
https://patientrevolution.org/visit-tools

Some questions that come to mind for me are:
-- Do you have any suggestions for lifestyle changes I can make to help manage the PMR symptoms?
-- Are there any exercises I should do or avoid?
-- Do you have any suggestions for a tapering plan if the pain isn't controlled by the current dose of prednisone or I have a flare up?
-- What do you think about keeping a daily log to track PMR pain and prednisone doses?

I'm sure other members can share some questions also. Good luck on your upcoming appointment and I hope you can let us know what you find out.

Jump to this post

Good questions! I have been advised to pursue a Mediterranean diet. I have been following this: No white bread, no red meat, NO sugar, and low salt. I may follow the above diet in the future, however.

REPLY
suetex | @suetex | Oct 15, 2022

As someone who has had breast surgery for cancer and awaiting to find out if I have to have chemo (I know I will be having radiation soon also) I am interested in all the info I can get. Also, how it wil interact with the other meds and conditions I have. As I find out, I'll share.

REPLY
1 reply
papabearpaddles | @papabearpaddles | Oct 20, 2022

I was diagnosed in mid May as well and started on 15mg of prednisone on 1 June. I initially did a quick taper from 40-10mg by 5mg a day ordered by my GP. Worked great until I got to 10mg and then PMR came raging back. Rheumatologist had me taper by 2.5mg per month so I am currently on 5mg. Taper will now go to .5mg a month as my adrenals should start kicking in. Anytime I tried to taper quickly I got punished so tapering does take some patience but also experimentation as we are all different.

John's questions are spot on so I would hit all of them.

In addition, I would ask about adrenal health and a quicker taper to 5mg since you have been on prednisone for 6 months already. My college roommate is an endocrinologist with 30 years of a treatment/research focus on adrenal/pituitary function. He stresses getting to below 5 as quickly as your PMR symptoms allow. Reason is that the longer your adrenal glands are suppressed by a suprapharmacologic dose of prednisone, the longer they take to recover. Most people take a month of recovery for each month of >5mg. So right now I will likely be on a 6 month slow taper from 5 to 0. Also, the longer your adrenals are suppressed, the higher the risk they may not recover.

Good luck!

REPLY
1 reply
jillsteindler | @jillsteindler | Oct 26, 2022
In reply to @papabearpaddles "I was diagnosed in mid May as well and started on 15mg of prednisone on 1..." + (show)
@papabearpaddles

I was diagnosed in mid May as well and started on 15mg of prednisone on 1 June. I initially did a quick taper from 40-10mg by 5mg a day ordered by my GP. Worked great until I got to 10mg and then PMR came raging back. Rheumatologist had me taper by 2.5mg per month so I am currently on 5mg. Taper will now go to .5mg a month as my adrenals should start kicking in. Anytime I tried to taper quickly I got punished so tapering does take some patience but also experimentation as we are all different.

John's questions are spot on so I would hit all of them.

In addition, I would ask about adrenal health and a quicker taper to 5mg since you have been on prednisone for 6 months already. My college roommate is an endocrinologist with 30 years of a treatment/research focus on adrenal/pituitary function. He stresses getting to below 5 as quickly as your PMR symptoms allow. Reason is that the longer your adrenal glands are suppressed by a suprapharmacologic dose of prednisone, the longer they take to recover. Most people take a month of recovery for each month of >5mg. So right now I will likely be on a 6 month slow taper from 5 to 0. Also, the longer your adrenals are suppressed, the higher the risk they may not recover.

Good luck!

Jump to this post

Thank you for all the information and comments! So grateful.
I will post an update after my appointment tomorrow!
All great questions!

REPLY
jillsteindler | @jillsteindler | Oct 26, 2022
In reply to @suetex "As someone who has had breast surgery for cancer and awaiting to find out if I..." + (show)
@suetex

As someone who has had breast surgery for cancer and awaiting to find out if I have to have chemo (I know I will be having radiation soon also) I am interested in all the info I can get. Also, how it wil interact with the other meds and conditions I have. As I find out, I'll share.

Jump to this post

Sorry about your cancer, I’ll definitely share any information I get!

REPLY
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