I’m Not Responding to Prednisone and I Need Advice

Posted by cliffg26 @cliffg26, Oct 28, 2023

I was diagnosed with PMR last March. My doctor prescribed 15 mg of Prednisone and then reduced that to 12.5. There wasn’t much improvement and recently he increased the dosage to 20 mg. He also referred me to a rheumatologist with whom I have an appointment in four months. Things move slowly here.

I’m very tired all the time and I spend most of my days sitting at my computer or sleeping. The pain and fatigue make it impossible to accomplish much. I would appreciate any suggestions.

Thanks,
Cliff

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

Profile picture for tivogliobene @tivogliobene

Wish I could help, but I’m going through the same thing. I’ve been on prednisone since April, and 15 mgs. did not help. Despite the low dosage, I’ve had some nasty side effects, like losing my hair, fatigue and, of course, pain. I’ve been weaned down to 3 mgs. and feel exactly the same as I did when I started. I’m beginning to doubt if I really have PMR, or is it something else. I’m going to hang in there until I can get off the prednisone. I wish you luck.

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@tivogliobene
Really sorry to hear what you're going through, but glad you're here on the support group.
Is your Dr. a Rheumatologist?
It sounds possible you've never had complete resolution of your pain and symptoms if 15mg is the highest dose you've had and you've never gotten full relief? You may have needed to go up higher on Prednisone dose from the beginning? I was started at 15mg but it wasn't enough, so I had to go up to 20, and then 25mg, before it worked and fully resolved. Then after 2 weeks at 25mg, my Rheumatologist had me start tapering 2.5mg every 14 days. If you're back to where you started pain/symptoms wise and at 3mg, personally, and never got full relief from Prednisone, I wouldn't jump to the conclusion that you don't have PMR, but question your Dr. about why he/she believes you have PMR, and has he/she talked with you about Kevzara or any other Prednisone sparing drug to help you taper off of Prednisone while keeping your pain/symptoms under control?
Have you had any blood tests like CRP or ESR that came back high positive? Have you had a Color Dopplar Ultrasound of your shoulders that can see if you have the type of issues in your shoulders that are present with PMR?
If your Dr. isn't a Rheumatologist, you might consider finding one ASAP.
I too am having hair loss at just 3 months of Prednisone, but my pain was so brutal and my symptoms so horrible (and woke me up every single night for 4-1/2 months) so I was/am so grateful for Prednisone, but also want to get off of it ASAP too, but not to go right back to where I was before Prednisone. If you don't know anything about Kevzara or other sparing drugs, you might want to research those as well and decide if you want to try that. You make your own choices re Prednisone or any other meds, but for myself, I'm taking Kevzara and Prednisone, but it'll take at least 8-12 weeks to get enough into my system to help take over for the Prednisone. So, I'm gradually tapering Prednisone while beginning Kevzara and will eventually (hopefully) be able to get completely off Prednisone. The hope for all of us with PMR is to eventually be able to stop all medications and our PMR to be in remission (so to speak). It may take up to 1 year (+/-), and for some of us, even longer. This is a very long post but hope it's helpful in any way.
Blessings.

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Profile picture for boomermeg @boomermeg

@tivogliobene
Really sorry to hear what you're going through, but glad you're here on the support group.
Is your Dr. a Rheumatologist?
It sounds possible you've never had complete resolution of your pain and symptoms if 15mg is the highest dose you've had and you've never gotten full relief? You may have needed to go up higher on Prednisone dose from the beginning? I was started at 15mg but it wasn't enough, so I had to go up to 20, and then 25mg, before it worked and fully resolved. Then after 2 weeks at 25mg, my Rheumatologist had me start tapering 2.5mg every 14 days. If you're back to where you started pain/symptoms wise and at 3mg, personally, and never got full relief from Prednisone, I wouldn't jump to the conclusion that you don't have PMR, but question your Dr. about why he/she believes you have PMR, and has he/she talked with you about Kevzara or any other Prednisone sparing drug to help you taper off of Prednisone while keeping your pain/symptoms under control?
Have you had any blood tests like CRP or ESR that came back high positive? Have you had a Color Dopplar Ultrasound of your shoulders that can see if you have the type of issues in your shoulders that are present with PMR?
If your Dr. isn't a Rheumatologist, you might consider finding one ASAP.
I too am having hair loss at just 3 months of Prednisone, but my pain was so brutal and my symptoms so horrible (and woke me up every single night for 4-1/2 months) so I was/am so grateful for Prednisone, but also want to get off of it ASAP too, but not to go right back to where I was before Prednisone. If you don't know anything about Kevzara or other sparing drugs, you might want to research those as well and decide if you want to try that. You make your own choices re Prednisone or any other meds, but for myself, I'm taking Kevzara and Prednisone, but it'll take at least 8-12 weeks to get enough into my system to help take over for the Prednisone. So, I'm gradually tapering Prednisone while beginning Kevzara and will eventually (hopefully) be able to get completely off Prednisone. The hope for all of us with PMR is to eventually be able to stop all medications and our PMR to be in remission (so to speak). It may take up to 1 year (+/-), and for some of us, even longer. This is a very long post but hope it's helpful in any way.
Blessings.

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In reply to @tivogliobene "@boomermeg" + (show)

@tivogliobene
Thank you for your sound advise. It was very helpful. I think you’re right that my dosage was never enough from the beginning. My CRP was normal, but I don’t know about the rest. Thank you again for your caring note.
Blessings to you as well.

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Profile picture for tivogliobene @tivogliobene

@tivogliobene
Thank you for your sound advise. It was very helpful. I think you’re right that my dosage was never enough from the beginning. My CRP was normal, but I don’t know about the rest. Thank you again for your caring note.
Blessings to you as well.

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@tivogliobene
You're welcome. I so appreciate all the care and help I've received here as well.
If I didn't mention it, I'm a newbie 7/31/26, but have read that CRP and ESR blood tests may not be elevated but a person could still have active inflammation and PMR.
Here's a link to the "Brave" browser search I just did. Hope it helps with info and I hope you get the help and pain/symptom relief you need. Blessings.

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Profile picture for tivogliobene @tivogliobene

@tivogliobene
Thank you for your sound advise. It was very helpful. I think you’re right that my dosage was never enough from the beginning. My CRP was normal, but I don’t know about the rest. Thank you again for your caring note.
Blessings to you as well.

Jump to this post

@tivogliobene
I forgot to put link...
See below

Yes, a person can have active Polymyalgia Rheumatica (PMR) with normal or low CRP and ESR levels. While most patients present with elevated inflammatory markers, studies indicate that 7% to 22% of PMR cases have normal ESR at diagnosis, and a smaller subset (approximately 1% to 14%) have both ESR and CRP within normal ranges.

Patients with normal inflammatory markers often exhibit a milder clinic…
https://search.brave.com/search

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As I understand it, immediate and positive response to prednisone or prednisolone is one diagnostic for the presence of PMR. I am not a doctor but if you are not feeling better than either your dose is too low or you dont have PMR.

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