Prednisone and Pain

Posted by keelin @keelin, Oct 29, 2022

Am I the only one that found the prednisone did NOTHING for the pain? I am 6 months into this nightmare and am slowly taking myself OFF prednisone entirely. I had horrible side effects, and it seems that everyone e else I read about has total relief from pain while on the prednisone. ?
The only thing that helps slightly is an anti inflammatory. But of course I am warned about stroke, heart attack, and kidney problems taking it long term.

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

Two GPs (Ocala and Orlando) and two Rheumatologists (Ocala and Clermont), Pain Management (Anodyne) (Ocala) have ALL concluded that I have PMR. Nothing else. I have had bloodwork, XRAYS, and further testing for any other anomalies....nothing. Straight and simple PMR.
What you have to understand is that Prednisone is intolerable to some people, and does not manage the pain.
1. My blood pressure shot up to the sky- and was always low.
2. The pressure in my eyes shot up to over 30.
3. I was experiencing shaking so badly that I could not get a spoon to my mouth.
4. Foot Cramps
5. Inability to sleep at all.
6. NO RELIEF from PAIN.
7. Tremendous Anxiety
I will not be responding to any further 'concerns' from people on this site, who seem anxious to lay more diagnoses on me, and/or who choose to INSIST that Prednisone is a sovereign and irrefutable answer to PMR for everyone. Personally, I would not question someone else's diagnosis, as it's not my business to deny their experience- with PMR or anything else.

REPLY
@keelin

Two GPs (Ocala and Orlando) and two Rheumatologists (Ocala and Clermont), Pain Management (Anodyne) (Ocala) have ALL concluded that I have PMR. Nothing else. I have had bloodwork, XRAYS, and further testing for any other anomalies....nothing. Straight and simple PMR.
What you have to understand is that Prednisone is intolerable to some people, and does not manage the pain.
1. My blood pressure shot up to the sky- and was always low.
2. The pressure in my eyes shot up to over 30.
3. I was experiencing shaking so badly that I could not get a spoon to my mouth.
4. Foot Cramps
5. Inability to sleep at all.
6. NO RELIEF from PAIN.
7. Tremendous Anxiety
I will not be responding to any further 'concerns' from people on this site, who seem anxious to lay more diagnoses on me, and/or who choose to INSIST that Prednisone is a sovereign and irrefutable answer to PMR for everyone. Personally, I would not question someone else's diagnosis, as it's not my business to deny their experience- with PMR or anything else.

Jump to this post

Hi @keelin, You are not alone. I'm hoping you continue to post your experience. It helps when you share your story as I'm sure there are other members that may also be in your situation with PMR that are looking for answers and prednisone is not providing the relief from PMR symptoms. It's good to hear from everyone that is looking for answers and I'm hoping you find something that helps and are able to share what helps you.

You may have already seen this 2016 research article but thought I would share it so others understand prednisone does not work for everyone with a PMR diagnosis.

"Furthermore, as there are no guidelines for the management of GC-resistant PMR patients, alternative therapies may be considered. Immunosuppressive agents such as methotrexate (MTX) and biological agents such as anti-tumor necrosis factor-α (anti-TNFα) agents and anti-interleukin-6 (anti-IL-6) receptor antibody tocilizumab (TCZ) may be possible candidates as adjunctive therapies."
-- Glucocorticoid-resistant polymyalgia rheumatica: pretreatment characteristics and tocilizumab therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4844628/

REPLY
@keelin

Not true. Prednisone does not work for everybody with PMR. The side effects required me to go way down to 1mg only.
I have PMR, and nothing else.

Jump to this post

Prednisone side effects (which are awful) is a different issue than prednisone being effective. I have a severe case of PMR and have been on 50mg/day for 6 months. Every time I decrease the dose, the pain comes back. It's the *only* thing that has helped the pain and inflammation. The side effects are horrible, especially at such a high dose, but the pain is worse. I understand people avoiding prednisone due to side effects, but that doesn't mean it's not effective in treating PMR.

REPLY

A gentle reminder of the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) These Community Guidelines offer 12 short rules of conduct that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful.

In particular, take note of guideline 1 and 2.
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

Everyone experiences medications and side effects differently. A medication may be effective for one person and not for another.

REPLY
@michwest

I started on 15mg prednisone over two weeks ago after a confirmation by PET scan of pmr. I’m only 55 so going from being a 5 day a week runner, workouts, etc person it has been extremely difficult for me. 15 mg helped significantly but I had 2 areas that were stubbornly not decreasing in pain. My neck and shoulders and behind my knees. Specialist increased last week to 20mg which has helped the shoulders/neck but I still have pain behind my knees if I try to kneel - which I haven’t been able to do for months. Has anyone else experienced a stubborn spot that the prednisone doesn’t seem to help or at least to help significantly?

Jump to this post

Yes - My biceps!

REPLY
@christi48

Yes - My biceps!

Jump to this post

Oh did you ever get rid of that pain ?

REPLY
@carlotta

I am on a low-dose 7 1/2 MG daily and aspirin. My pain is not gone. It’s like a dull ache all the time. Arm mobility and fatigue and some pain are my main problems. And then toward the end of the day it gets worse but it’s not as bad as it was back in August. I don’t want to go back there. the pain was so bad. I am relatively new to this but hoping that the Aspirin and prednisone will eventually give me complete relief but I don’t expect it.
I’m learning and this group helps me. I don’t know how much emotions and stress has to do with PMR.

Jump to this post

Hi Carlotta,
If you are still experiencing pain while on prednisone, you are not taking a high enough dose. Why are you taking only 7 1/2 mg if you are still in pain?

REPLY
@carlotta

I am on a low-dose 7 1/2 MG daily and aspirin. My pain is not gone. It’s like a dull ache all the time. Arm mobility and fatigue and some pain are my main problems. And then toward the end of the day it gets worse but it’s not as bad as it was back in August. I don’t want to go back there. the pain was so bad. I am relatively new to this but hoping that the Aspirin and prednisone will eventually give me complete relief but I don’t expect it.
I’m learning and this group helps me. I don’t know how much emotions and stress has to do with PMR.

Jump to this post

My PMR began fourteen years ago during a time of worry and anxiety and I have always believed that the emotional stress played a part in triggering the symptoms.

REPLY
@tls4

Hi Carlotta,
If you are still experiencing pain while on prednisone, you are not taking a high enough dose. Why are you taking only 7 1/2 mg if you are still in pain?

Jump to this post

I’m just starting this journey. Newly diagnosed. Dr put me on 71/2 with aspirin. I don’t have another appointment for 2 more weeks. I was on 20 then 10. Then to the 71/2.
Debating whether to call office but I know he’s on vacation.

REPLY
@michwest

Oh did you ever get rid of that pain ?

Jump to this post

I've found that some things mitigate my localized pain - movement, even in the middle of the night; a massaging seat cover laid flat on the bed (for my hips); and heat. Movement seems to be the most effective, including raising my arms out to my sides several times (like a flying motion), and out in front of me and over my head. I have to push through the pain with the first rep, but then it gets easier... Best wishes to everyone struggling with this disorder.

REPLY
Please sign in or register to post a reply.