1. < Polymyalgia Rheumatica (PMR)

NEW to PMR diagnosis

Posted by deborah57 @deborah57, Mar 6 7:30am

Hi, I am new here and just finding my way. I have some questions. I was recently diagnosed with PMR. I took the initial diagnostic dose of tapered Methylprednisolone and responded immediately so my Dr prescribed 5mg Prednisone while I am waiting to see a Rhematologist.
I haven't started taking it yet.
I am terrified of prednisone. I'm sensitive to drugs and have had numerous bad experiences with some of them. I'm healthy, eat clean, don't drink or smoke, get exercise daily.
Here are some of my questions:
I see a lot of discussion about people trying to taper off Pred. How long are people usually on it before starting to try and taper? If you have been on the drug for awhile, when and why would you decide to taper?
Does anyone have experience with inter muscular injections? Or the new Biologic KevZara?

thanks for any information!

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

megz | @megz | 6 days ago
In reply to @weten2 "Hello I came down with the symptoms about 4 weeks ago and was confirmed recently. I’m..." + (show)
@weten2

Hello
I came down with the symptoms about 4 weeks ago and was confirmed recently.
I’m 75 white with German ancestry.
My twist in this is I’m due for a TKR on 11/27 and I’m in a dilemma; hold off treatment sometime after surgery, postpone surgery (1-5yrs???) or start low dose before to help me tolerate the pain from both items.
If I knew I can bare the pain of both right after surgery I would do it. It’s awful hard getting out of bed right now.
My pain went from a 8-9 to 2-3 with the two day trail and today 5 days after weening I am back to a 8-9.
I’m trying a high protein healthy diet (lost10 lbs) and trying to exercise around the pain.
I have a sharp IM MD and wonder when to see a rheumatologist?
Thank you
Greg

Jump to this post

Your doctor or surgeon should be able to tell you what the plan is for prednisone dosage approaching and after surgery, and what the plan is for pain control. Have you asked them?
What is a TKR and an IM MD?

REPLY
1 reply
DadCue | @dadcue | 6 days ago
In reply to @megz "Your doctor or surgeon should be able to tell you what the plan is for prednisone..." + (show)
@megz

Your doctor or surgeon should be able to tell you what the plan is for prednisone dosage approaching and after surgery, and what the plan is for pain control. Have you asked them?
What is a TKR and an IM MD?

Jump to this post

TKR = Total Knee Replacement
IM MD = Internal Medicine Doctor?? = PCP

REPLY
1 reply
DadCue | @dadcue | 6 days ago
In reply to @weten2 "Hello I came down with the symptoms about 4 weeks ago and was confirmed recently. I’m..." + (show)
@weten2

Hello
I came down with the symptoms about 4 weeks ago and was confirmed recently.
I’m 75 white with German ancestry.
My twist in this is I’m due for a TKR on 11/27 and I’m in a dilemma; hold off treatment sometime after surgery, postpone surgery (1-5yrs???) or start low dose before to help me tolerate the pain from both items.
If I knew I can bare the pain of both right after surgery I would do it. It’s awful hard getting out of bed right now.
My pain went from a 8-9 to 2-3 with the two day trail and today 5 days after weening I am back to a 8-9.
I’m trying a high protein healthy diet (lost10 lbs) and trying to exercise around the pain.
I have a sharp IM MD and wonder when to see a rheumatologist?
Thank you
Greg

Jump to this post

I had my knees replaced while on Prednisone but I wasn't newly diagnosed with PMR. Your surgeon will be the best person to ask. Some surgeons are reluctant to do surgery when someone is on Prednisone because of the risk of post-op infections.

Personally, I would want PMR to be under control before having surgery.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | 6 days ago
In reply to @weten2 "Hello I came down with the symptoms about 4 weeks ago and was confirmed recently. I’m..." + (show)
@weten2

Hello
I came down with the symptoms about 4 weeks ago and was confirmed recently.
I’m 75 white with German ancestry.
My twist in this is I’m due for a TKR on 11/27 and I’m in a dilemma; hold off treatment sometime after surgery, postpone surgery (1-5yrs???) or start low dose before to help me tolerate the pain from both items.
If I knew I can bare the pain of both right after surgery I would do it. It’s awful hard getting out of bed right now.
My pain went from a 8-9 to 2-3 with the two day trail and today 5 days after weening I am back to a 8-9.
I’m trying a high protein healthy diet (lost10 lbs) and trying to exercise around the pain.
I have a sharp IM MD and wonder when to see a rheumatologist?
Thank you
Greg

Jump to this post

Hello @weten2, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic so that you can connect with other members who are new to a PMR diagnosis. If you click the link below it will take you to the beginning of the discussion and you can learn what has been shared by other members and what questions they have mentioned.

-- NEW to PMR diagnosis: https://connect.mayoclinic.org/discussion/new-to-pmr-diagnosis/

That is definitely a difficult decision to make. I've had a TKR on my right knee but it was after my PMR had been in remission for a couple of years. If it were me, I would have a discussion with the surgeon doing the TKR to get their thoughts. I don't think you can be on prednisone and have the surgery and there are a lot of pre-surgery leg exercises that my surgeon had me doing prior to having the TKR. Have you talked with the surgeon?

REPLY
1 reply
weten2 | @weten2 | 6 days ago
In reply to @dadcue "I had my knees replaced while on Prednisone but I wasn't newly diagnosed with PMR. Your..." + (show)
@dadcue

I had my knees replaced while on Prednisone but I wasn't newly diagnosed with PMR. Your surgeon will be the best person to ask. Some surgeons are reluctant to do surgery when someone is on Prednisone because of the risk of post-op infections.

Personally, I would want PMR to be under control before having surgery.

Jump to this post

Dadcue, even though I won’t be on prednisone do you feel the PMR is a detriment to the knee surgery? Because of inflammation?

REPLY
1 reply
megz | @megz | 6 days ago
In reply to @dadcue "TKR = Total Knee Replacement IM MD = Internal Medicine Doctor?? = PCP" + (show)
@dadcue

TKR = Total Knee Replacement
IM MD = Internal Medicine Doctor?? = PCP

Jump to this post

Thank you. Never heard of a TKR. Acronyms throw me every time and I have trouble remembering them even after being told. We don't have internal medicine doctors in Australia, but we do have GPs, general practitioners, which I take it is your PCP - which I had to google through pages of links to the drug Angel Dust (PCP/phencyclidine) to find. IM MD google search took me to Ironman Maryland and your immigration department. I do try to find these things but sometimes, no luck.

REPLY
1 reply
weten2 | @weten2 | 6 days ago
In reply to @johnbishop "Hello @weten2, Welcome to Connect. You will notice that we moved your post to an existing..." + (show)
@johnbishop

Hello @weten2, Welcome to Connect. You will notice that we moved your post to an existing discussion on the same topic so that you can connect with other members who are new to a PMR diagnosis. If you click the link below it will take you to the beginning of the discussion and you can learn what has been shared by other members and what questions they have mentioned.

-- NEW to PMR diagnosis: https://connect.mayoclinic.org/discussion/new-to-pmr-diagnosis/

That is definitely a difficult decision to make. I've had a TKR on my right knee but it was after my PMR had been in remission for a couple of years. If it were me, I would have a discussion with the surgeon doing the TKR to get their thoughts. I don't think you can be on prednisone and have the surgery and there are a lot of pre-surgery leg exercises that my surgeon had me doing prior to having the TKR. Have you talked with the surgeon?

Jump to this post

Thanks for the input. I’ve talked to the surgeons scheduler but not the surgeon. The scheduler said I can ask the surgeon at the pre-op appointment 1 week before surgery. That is cutting it close!
On this sight I saw were surgeons have approved a patient on 10mg or less prednisone.
I’ve been doing the surgeons exercises for 2 weeks.

REPLY
DadCue | @dadcue | 6 days ago
In reply to @megz "Thank you. Never heard of a TKR. Acronyms throw me every time and I have trouble..." + (show)
@megz

Thank you. Never heard of a TKR. Acronyms throw me every time and I have trouble remembering them even after being told. We don't have internal medicine doctors in Australia, but we do have GPs, general practitioners, which I take it is your PCP - which I had to google through pages of links to the drug Angel Dust (PCP/phencyclidine) to find. IM MD google search took me to Ironman Maryland and your immigration department. I do try to find these things but sometimes, no luck.

Jump to this post

GP=general practitioners and PCP=primary care physicians are the same here. It is just a matter of personal preference for what you want to call them.

I haven't seen the acronym IM MD used very often but most Internal Medicine Doctors serve as GP's and PCP's. Anyway, they are all basically the same.

Doing away with all acronyms in medicine is starting to be implemented in favor of spelling everything out. There are too many acronyms which can cause confusion and the potential for medical errors.

PCP is a good example. Depending on the context you might have to guess if someone means the drug or the doctor. Sometimes it isn't easy to decipher medical records.

Medical research papers are the worst for making up acronyms.

REPLY
1 reply
DadCue | @dadcue | 6 days ago
In reply to @weten2 "Dadcue, even though I won’t be on prednisone do you feel the PMR is a detriment..." + (show)
@weten2

Dadcue, even though I won’t be on prednisone do you feel the PMR is a detriment to the knee surgery? Because of inflammation?

Jump to this post

Your knee will be plenty stiff and painful after surgery. You need your arms and shoulders to get out of a chair for a couple of weeks after surgery.

When I was first diagnosed with PMR it was impossible to move my arms because of shoulder pain. I had a hard time getting out of a chair or out of bed with just PMR. It would have been absolutely impossible for me to move if I had active PMR and a TKR.

They will want to mobilize you immediately after surgery. They wanted me out of bed and walking on the day of surgery so I could be discharged from the hospital the next day.

REPLY
1 reply
weten2 | @weten2 | 6 days ago
In reply to @dadcue "GP=general practitioners and PCP=primary care physicians are the same here. It is just a matter of..." + (show)
@dadcue

GP=general practitioners and PCP=primary care physicians are the same here. It is just a matter of personal preference for what you want to call them.

I haven't seen the acronym IM MD used very often but most Internal Medicine Doctors serve as GP's and PCP's. Anyway, they are all basically the same.

Doing away with all acronyms in medicine is starting to be implemented in favor of spelling everything out. There are too many acronyms which can cause confusion and the potential for medical errors.

PCP is a good example. Depending on the context you might have to guess if someone means the drug or the doctor. Sometimes it isn't easy to decipher medical records.

Medical research papers are the worst for making up acronyms.

Jump to this post

Actually the IM MD I made up. He is my GP however what I thought what was more credible was his Internal Medicine certification.
Many GP’s are DO(DR of Ostheopath). At my extended age wanted a IM for my GP.

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