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

Prednisone love/hate support group

Posted by Mike @dadcue, Feb 3 8:18am

For anyone interested in a good source of information, the Prednisone Pharmacist is prolific with making videos on a wide variety of topics about prednisone. I know she also has a vitamin formulation that she promotes. I don't think the vitamin formulation she promotes should distract from the information she shares.

The topic in the following video is one of my interests. I have never tried her vitamins. I just appreciate the information about why it is such a struggle to taper off prednisone.

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

Profile picture for bonandrods
bonandrods | @bonandrods | Nov 12 1:17pm

She is fabulous. A wealth of information. She also has many that are PMR specific.

REPLY
Profile picture for pattiobrien111
pattiobrien111 | @pattiobrien111 | Nov 13 8:49am
In reply to @pb50 "@dadcue and @johnbishop Hi Mike and John. I am in a point of trepidation and would..." + (show)
Profile picture for pb50 @pb50

@dadcue and @johnbishop

Hi Mike and John. I am in a point of trepidation and would appreciate your reaction. You may remember that when i had my PMR-esque initial onset of RA a dozen yrs ago, i really had global joint involvement - hips, shoulders, ankles, hands, feet. my awesome doc in NYC decided to save heavy doses of prednisone to try Humira first
- and it was miraculous. Since then ive had prednisone for flares and joke that i don't know what the big deal with narcotics is - give me Prednisone any day. But it has always been 10-15 mg for a week and then tapering off easily.

Skip to a week ago. I began to have knee pain - one sided. Could hardly walk so got neoprene sleeve and bigger wraps. And then… here comes hips and ankles and feet and hands. And now it seems global. Even big muscle groups.

Today Doc called in 30 mg of Prednisone x4 days then 20x4 days, then 10, then off

I don't think i have ever been at a 30mg dose and it scares me a bit. Will I sleep at all?? Do i take it all at once in morning? Are there
Other risks? I mean I want to deal with the pain but this feels like a bazooka.

Mike, I know you used to take 60 for your eyes as I recall, so thought you could tell me to get over myself 🙂

Thanks
Pam

Jump to this post

@pb50
Dr Kate Gilbert’s book on PMR/GCA is fantastic. Buy and read it. Too much info to get into here re: prednisone but she covers it extensively. Extremely helpful. A PMR survivor, she is clear and free now.
Best.

REPLY
Profile picture for Mike
Mike | @dadcue | Nov 13 10:26am
In reply to @pb50 "Thank you!!!" + (show)
Profile picture for pb50 @pb50

Thank you!!!

Jump to this post

@pb50

Has anyone ever told you that being diagnosed with RA doesn't exclude the possibility of also having PMR?

Wasn't your son diagnosed with reactive arthritis which creates additional possibilities? He got his genes from somewhere. Have you been tested for HLA-B27?
https://www.jrheum.org/content/early/2025/05/23/jrheum.2025-0167
------------------------------
Being positive for HLA-B27 didn't make it any easier to be treated but it was nice to know about. My rheumatologist actually told me it would be impossible to adequately treat everything.
https://www.ncbi.nlm.nih.gov/books/NBK551523/
-------------------------------

REPLY
Profile picture for pb50
pb50 | @pb50 | Nov 13 11:12am

Indeed my son developed severe reactive arthritis following knee surgery and had to go to a unit at Medical College of Charleston for surgical complications to get diagnosed.. and I have not been tested for that. Thanks for the tip!

Yea - i held a private parade yesterday because my knee was all better after two days of 30mg . today it's not. 🙂 the diffuse inflammation is way better, but the tendon and patella are still painful it seems. And yes, two things can be going on at once 🙂

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