1. < Polymyalgia Rheumatica (PMR)

PMR and prednisone

Posted by gramsof6 @gramsof6, Sep 19 12:47am

I was diagnosed in April with PMR. Because it was mainly in my shoulders I saw an orthopedic surgeon who put me on an inflammatory. Shortly there after I had an appointment with my rheumatologist and diagnosed me promptly.
He started me on 5mg 2 to 3 a day of prednisone.
The problem is I am a diabetic but was only on metformin. Now I am using small doses of insulin. What I don't understand, did you stay on a consistent everyday?
On days I feel great I avoid taking my prednisone. Recently my pain is now in my thighs which is affecting my ability to walk. I have a granddaughter that plays college soccer, 2 granddaughters that play high school varsity soccer and we attend high school football games. This means that at least 4 times a week I am climbing bleachers. I believe this is a contributing factor to the thigh pain. I am OCD about my house, enjoy cooking and canning and I am also a quilter. I am finding these activities difficult too. I am really confused about the proper way I should be taking my prednisone. My rheumatologist is aware that I am concerned about my sugar and has not established a definite guide line for taking the prednisone. I use infrared heat, supplements, oils and Voltaren
I would appreciate any suggestions. I did receive a steroid injection in one arm because the bursa was so inflamed it caused a large painful bump. Has anyone tried physical therapy or massages? Today was horrible and I retreated to bed. I am so glad I found this group and am looking forward to any suggestions. We are planning a trip to Gatlinburg and would enjoy hiking. Thank you, Deb from Ohio

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

nancy53 | @nancy53 | Sep 20 7:13am

So sorry that you have PMR. It's a hard disease to regulate. I imagine even harder with diabetes.

I don't think skipping your doses of Prednisone is a good idea. From what I've read, your adrenal glands produce cortisol and stop functioning with the presence of the drug. Those little white pills are very potent, and not followong the dosing protocol can be very dangerous. Not taking it probably contributes to the pain you are having,

My onset of PMR was last December. I started on 20mg of Prednisone, taken in the morning. I've taoered to 5.5mg by reducing 0.5mg every 2-3 weeks. If I hurt, I go back up 0.5mg and slow my tapering.

Yoga, acupuncture, walking, and swimming have helped my pain. I am active in my home and garden. Some days I don't do much which drives me crazy. Fatigue requires an after lunch rest - sometimes nap.

Probably the most important aid to recovery is your diet. Since December, I have eaten a very "clean" diet. The Arthritis Foundation has great info. Basically, I try not to consume processed food, white flour, sugar, sodas, red meat, and alcohol. I do have a treat every once in a while.

Prior to December, I was a very active 70 year old. Trying to get back to pre PMR levels of activity has been a challenge, I think I need to just relax a bit and enjoy the little things.

My best advice for you is to STUDY and READ all you can about this awful disease. YouTube has some great videos, most from the UK. This link helped me tremendously at first. https://youtu.be/fjk27oGh2aQ

Good luck and enjoy your grandkids!

REPLY
1 reply
sandiw77 | @sandiw77 | Sep 20 8:32am
In reply to @gramsof6 "Yes 2 to 3 5mg per day. I didn't know I had to taper. Thank you..." + (show)
@gramsof6

Yes 2 to 3 5mg per day. I didn't know I had to taper. Thank you fir the information.

Jump to this post

Glad you have joined the group and hope you get all the answers you need. I am chiming in to say that your taper begins after your pain and inflammatory markers (C- Reactive Protein and Sed Rate) are stable. Blood sugar is a concern for me too and mine has recently been on the rise. A consistent low glycemic diet has been effective for me to lower blood sugar in the past, but I have not been diligent recently and it is showing. I hope this is helpful and I am glad that you are here. Blessings! ❤️

REPLY
1 reply
mtr2601 | @mtr2601 | Sep 20 1:45pm

Hi, this is a great forum for finding out everything you never wanted to know about the nasty drugs for PMR. I am concerned for you when reading your post that your Rheumatologist has had you taking 10 to 15mg Prednisone since April when you have diabetes and that you have gone from diet controlled diabetes to needing insulin. And even more concerned that you take it 'when you feel like it' Sounds to me like you need a second opinion. There are lots of great links on this site to help you understand how Prednisone works, a lot of us have had problems with our medical management and have had to become experts on our own disease and how we should be managed.

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1 reply
lindaadel | @lindaadel | Sep 20 5:38pm

I can relate exactly how you are feeling while on prednisone! There’s no magic formula for prednisone for me .If you are having problems with your dose of prednisone my advice to you would be speak to your rheumatologist and not change the dosage on your own!!! when you are not feeling well enough to do a certain activity do whatever is comfortable for you and if it’s not skip it for until you’re ready to do it!!! I also have OCD so I can understand where you’re coming from. PMR for me is very very disconcerting!!! My very best wishes to you!!!

REPLY
1 reply
hopeinal | @hopeinal | Sep 20 6:55pm
In reply to @reets70 "I sat in my recliner for six months due to horrible PMR pain. I’m back on..." + (show)
@reets70

I sat in my recliner for six months due to horrible PMR pain. I’m back on prednisone, every day, and I can now walk and exercise! I’m dealing with the prednisone side effects as best I can, but it feels wonderful to be able to make my own dinner, vacuum my floors, and basically feel human again! I’m 84 years old and feel like 54 because of the medication!💊

Jump to this post

I'm with you! Have tried to taper 3 times and always hit the wall at 6 mg with horrible pain, feeling like I have the flu, brain fog, the whole enchilada. Gave up yesterday after two weeks of misery and went back up to 9 mg daily. Yes it feels so wonderful to be up and going again. I'm 72 and feel like 42 or 52!

REPLY
gramsof6 | @gramsof6 | Sep 20 9:44pm
In reply to @mtr2601 "Hi, this is a great forum for finding out everything you never wanted to know about..." + (show)
@mtr2601

Hi, this is a great forum for finding out everything you never wanted to know about the nasty drugs for PMR. I am concerned for you when reading your post that your Rheumatologist has had you taking 10 to 15mg Prednisone since April when you have diabetes and that you have gone from diet controlled diabetes to needing insulin. And even more concerned that you take it 'when you feel like it' Sounds to me like you need a second opinion. There are lots of great links on this site to help you understand how Prednisone works, a lot of us have had problems with our medical management and have had to become experts on our own disease and how we should be managed.

Jump to this post

Thank you for the advise.

REPLY
gramsof6 | @gramsof6 | Sep 20 9:46pm
In reply to @lindaadel "I can relate exactly how you are feeling while on prednisone! There’s no magic formula for..." + (show)
@lindaadel

I can relate exactly how you are feeling while on prednisone! There’s no magic formula for prednisone for me .If you are having problems with your dose of prednisone my advice to you would be speak to your rheumatologist and not change the dosage on your own!!! when you are not feeling well enough to do a certain activity do whatever is comfortable for you and if it’s not skip it for until you’re ready to do it!!! I also have OCD so I can understand where you’re coming from. PMR for me is very very disconcerting!!! My very best wishes to you!!!

Jump to this post

Thank you! It is nice to know I am not going through this alone!

REPLY
gramsof6 | @gramsof6 | Sep 20 9:48pm
In reply to @sandiw77 "Glad you have joined the group and hope you get all the answers you need. I..." + (show)
@sandiw77

Glad you have joined the group and hope you get all the answers you need. I am chiming in to say that your taper begins after your pain and inflammatory markers (C- Reactive Protein and Sed Rate) are stable. Blood sugar is a concern for me too and mine has recently been on the rise. A consistent low glycemic diet has been effective for me to lower blood sugar in the past, but I have not been diligent recently and it is showing. I hope this is helpful and I am glad that you are here. Blessings! ❤️

Jump to this post

Thank you! So many questions and hard to get answers. I think I am really going to like this group!

REPLY
gramsof6 | @gramsof6 | Sep 20 9:53pm
In reply to @dadcue "Was your prescription written 5 mg of Prednisone 2-3 times per day as needed? Is your..." + (show)
@dadcue

Was your prescription written 5 mg of Prednisone 2-3 times per day as needed? Is your prescription for hydrocortisone?

The typical starting dose of Prednisone for PMR is 15 mg every day taking the entire dose every morning with food.

"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"
https://emedicine.medscape.com/article/330815-treatment?form=fpf
-------------------------------
A side effect of Prednisone is increased blood glucose levels. The link above has several pages that discuss diet and exercise as well as how you should taper off Prednisone.

There is no single best way or correct way to taper off Prednisone no matter what you may read. There are too many factors to consider for someone to suggest they know the best way to taper. There is no research that supports any tapering strategy that works better except for a "slow taper." Nobody knows how slow because it is all based on your own individual symptoms and whether or not you relapse.

I must have done everything wrong because I was on Prednisone to treat PMR for more than 12 years. It took that long until my rheumatologist found a better treatment option for me.

Jump to this post

Thank you! My prescription was 2 to 3 5mg of prednisone a day. I did ask my physician if I could divide it over the day and he had no objections. I am glad I found this site. I appreciate your input.

REPLY
1 reply
gramsof6 | @gramsof6 | Sep 20 10:07pm
In reply to @nancy53 "So sorry that you have PMR. It's a hard disease to regulate. I imagine even harder..." + (show)
@nancy53

So sorry that you have PMR. It's a hard disease to regulate. I imagine even harder with diabetes.

I don't think skipping your doses of Prednisone is a good idea. From what I've read, your adrenal glands produce cortisol and stop functioning with the presence of the drug. Those little white pills are very potent, and not followong the dosing protocol can be very dangerous. Not taking it probably contributes to the pain you are having,

My onset of PMR was last December. I started on 20mg of Prednisone, taken in the morning. I've taoered to 5.5mg by reducing 0.5mg every 2-3 weeks. If I hurt, I go back up 0.5mg and slow my tapering.

Yoga, acupuncture, walking, and swimming have helped my pain. I am active in my home and garden. Some days I don't do much which drives me crazy. Fatigue requires an after lunch rest - sometimes nap.

Probably the most important aid to recovery is your diet. Since December, I have eaten a very "clean" diet. The Arthritis Foundation has great info. Basically, I try not to consume processed food, white flour, sugar, sodas, red meat, and alcohol. I do have a treat every once in a while.

Prior to December, I was a very active 70 year old. Trying to get back to pre PMR levels of activity has been a challenge, I think I need to just relax a bit and enjoy the little things.

My best advice for you is to STUDY and READ all you can about this awful disease. YouTube has some great videos, most from the UK. This link helped me tremendously at first. https://youtu.be/fjk27oGh2aQ

Good luck and enjoy your grandkids!

Jump to this post

Your comments have been very helpful. I am 71 and try to stay active. We are planning a trip to Gatlinburg and we like to hike. Planning on taking my walking stick and do short distances. Thank you so much. I am not as confused.

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