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.

weten2 | @weten2 | Nov 8 8:05pm
In reply to @dadcue "Your knee will be plenty stiff and painful after surgery. You need your arms and shoulders..." + (show)
@dadcue

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.

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This was concerning to me about the two limiting medical conditions. I’m glad you shared this.
Just tonight I thought I would propose 3 options to the surgeon:
1. Don’t start PMP treatment and do surgery.
2. Start PMP treatment (10mg max) and do surgery.
3. Postpone surgery until PMP gone or in remission.
After you shared your experience I may need to eliminate #1!

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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.

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Dad cue
I had another bad night sleep and woke up thinking screw the TKR and start pain relief (prednisone). Unfortunately it’s Saturday and can’t talk to my doc until Monday. Contemplating starting today with 10mg/day or waiting until Monday. I’m thinking I want to get rid of the PMR before TKR. I have 10 days for the surgeon to decide whether to encourage the surgery with the prednisone in my system.
Right now I just want to feel better. Maybe I’ll change my mind when I feel better.

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Teri | @tsc | 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

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Hi @weten2
I had PMR which became GCA for a year before diagnosis; also knee surgery for severed ligaments when I was in my late 20s. Both are painful conditions. The knee pain localized, the PMR body-wide from the neck down for me at least.
Did your physician diagnose your PMR? Have you spoken to her/him about your upcoming surgery and the impact it could have on your symptoms?
Are you currently taking prednisone?
Surgery can cause an inflammatory response in the body, but prednisone controls inflammation.
Maybe your doctor can consult with the surgeon and a rheumatologist as well and they can figure out the best course of action for you.
Good luck.

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1 reply
weten2 | @weten2 | 5 days ago
In reply to @tsc "Hi @weten2 I had PMR which became GCA for a year before diagnosis; also knee surgery..." + (show)
@tsc

Hi @weten2
I had PMR which became GCA for a year before diagnosis; also knee surgery for severed ligaments when I was in my late 20s. Both are painful conditions. The knee pain localized, the PMR body-wide from the neck down for me at least.
Did your physician diagnose your PMR? Have you spoken to her/him about your upcoming surgery and the impact it could have on your symptoms?
Are you currently taking prednisone?
Surgery can cause an inflammatory response in the body, but prednisone controls inflammation.
Maybe your doctor can consult with the surgeon and a rheumatologist as well and they can figure out the best course of action for you.
Good luck.

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I’m stepping back a little and maybe get another opinion on the PMR diagnosis possibly by a RA. I haven’t gone on prednisone yet other than the two day 50mg diagnostic test. I’m most likely going to postpone surgery until I get confirmation or cure/remission.
Haven’t talked to surgeon and have 10 days to do so.
Doc’s plan was do surgery first then prednisone.

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1 reply
DadCue | @dadcue | 5 days ago
In reply to @weten2 "I’m stepping back a little and maybe get another opinion on the PMR diagnosis possibly by..." + (show)
@weten2

I’m stepping back a little and maybe get another opinion on the PMR diagnosis possibly by a RA. I haven’t gone on prednisone yet other than the two day 50mg diagnostic test. I’m most likely going to postpone surgery until I get confirmation or cure/remission.
Haven’t talked to surgeon and have 10 days to do so.
Doc’s plan was do surgery first then prednisone.

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Who did the two day 50 mg "diagnostic test." No such thing that I know about. Many conditions will respond to 50 mg of Prednisone.

"A rapid resolution of symptoms in response to prednisolone 15 mg daily was previously thought to represent a diagnostic surrogate for polymyalgia rheumatica. However, a small proportion of patients do not respond to three weeks of this therapy so it cannot be used to make the diagnosis."
https://pmc.ncbi.nlm.nih.gov/articles/PMC5828929/
------------------
This is an Australian source but they seem to know more than most!

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2 replies
weten2 | @weten2 | 5 days ago
In reply to @dadcue "Who did the two day 50 mg "diagnostic test." No such thing that I know about...." + (show)
@dadcue

Who did the two day 50 mg "diagnostic test." No such thing that I know about. Many conditions will respond to 50 mg of Prednisone.

"A rapid resolution of symptoms in response to prednisolone 15 mg daily was previously thought to represent a diagnostic surrogate for polymyalgia rheumatica. However, a small proportion of patients do not respond to three weeks of this therapy so it cannot be used to make the diagnosis."
https://pmc.ncbi.nlm.nih.gov/articles/PMC5828929/
------------------
This is an Australian source but they seem to know more than most!

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Thanks Dadcue. I’ve read in its entirety and now have more questions. I’m presently in South Florida and live in Columbus Ohio half the year where they have more health care providers. I plan to contact a RA there asap.
My priority is to have at least two docs that are in agreement with one of them the RA. The TKR is most likely going to be postponed.
Thank you my friend.
Greg
Thank

REPLY
weten2 | @weten2 | 4 days ago
In reply to @dadcue "Who did the two day 50 mg "diagnostic test." No such thing that I know about...." + (show)
@dadcue

Who did the two day 50 mg "diagnostic test." No such thing that I know about. Many conditions will respond to 50 mg of Prednisone.

"A rapid resolution of symptoms in response to prednisolone 15 mg daily was previously thought to represent a diagnostic surrogate for polymyalgia rheumatica. However, a small proportion of patients do not respond to three weeks of this therapy so it cannot be used to make the diagnosis."
https://pmc.ncbi.nlm.nih.gov/articles/PMC5828929/
------------------
This is an Australian source but they seem to know more than most!

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FWIW it was 20mg twice a day for 40mg. I thought they were 25mg tablets. Does that make you feel a little better?
I’ve had enough pain, sleepless nights and weight loss to go on.
I’d like to go on low dose pred until I can meet with an RA. Do you see any harm in this?

REPLY
1 reply
megz | @megz | 4 days ago
In reply to @weten2 "FWIW it was 20mg twice a day for 40mg. I thought they were 25mg tablets. Does..." + (show)
@weten2

FWIW it was 20mg twice a day for 40mg. I thought they were 25mg tablets. Does that make you feel a little better?
I’ve had enough pain, sleepless nights and weight loss to go on.
I’d like to go on low dose pred until I can meet with an RA. Do you see any harm in this?

Jump to this post

Take medical advice from your treating doctor, not from here. Your question "I’d like to go on low dose pred until I can meet with an RA. Do you see any harm in this?" should be directed to your doctor. Can you speak with him/her?

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