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.

DadCue | @dadcue | Nov 1, 2023

In reply to @jiminmich "When it comes to Prednisone the prescribed amount I seen is 100mg...not my wheelhouse." + (show)

My "self-imposed limit" was 60 mg of prednisone. I knew I could tolerate that much if I needed to take that much. I would always inform my rheumatologist when I wanted to take 60 mg to "quiet things down." Both my rheumatologist and primary care doctor knew I had a legitimate need for that much prednisone.

My ophthalmologist would usually start me at 60 mg for uveitis. He would sometimes increase my dose to 100 mg but he would ask me if I could tolerate that much. I couldn't tolerate 100 mg very long.

Once when I was desperate I asked my primary care doctor if I could take 100 mg for a condition that wasn't autoimmune but it responded to prednisone . The condition was trigeminal neuralgia.
https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Trigeminal-Neuralgia
My primary care doctor asked me if I was sure 100 mg would be enough.

A person's prednisone dose should be based on their weight. In reality, it is never prescribed accorded to a person's weight.
https://www.mayoclinic.org/drugs-supplements/prednisolone-oral-route/proper-use/drg-20075189
"Dose depends on medical condition:
Adults—At first, 5 to 60 milligrams (mg) per day. Your doctor may adjust your dose as needed."

I'm a big man so I guess my doctors thought I could tolerate 100 mg of prednisone. I used to be muscular but now I have more adipose than muscles. I think prednisone wasted my muscles. All the weight gain I experienced on prednisone was adipose.

johnbesaw | @johnbesaw | Nov 1, 2023

I increased mine from 5 to 10 without the Drs. permission (missing in action) and on the 2nd day the morning pain was easing up. This is the forth day pain is not all gone but what a difference. Just got to figure out my strategy with the Dr.

joybannister | @joybannister | Nov 1, 2023

In reply to @art43 "I had severe pain. Initial dose of 20 did nothing. After 4 days, doc increased dose..." + (show)

How long were you on 30 before you began to taper?

art43 | @art43 | Nov 1, 2023

In reply to @joybannister "How long were you on 30 before you began to taper?" + (show)

Just two weeks. At that time my SED rate was normal, and no pain or stiffness anywhere, so doc started taper. Doc wanted a SED test and to see me two weeks after starting the 30. Individual responses can of course be quite different.

cliffg26 | @cliffg26 | Nov 1, 2023

In reply to @art43 "I had severe pain. Initial dose of 20 did nothing. After 4 days, doc increased dose..." + (show)

Well done! I would love to try that, but I think my doctors would like me to disappear. The last time I saw my doctor, he told me I wasn't normal, and it would take a smarter man than him to figure out my problems.

joybannister | @joybannister | Nov 2, 2023

In reply to @art43 "Just two weeks. At that time my SED rate was normal, and no pain or stiffness..." + (show)

Thank you! I’m going to try your approach. I’ve been at 15, 20, 17.5 over 2 months total and have not been able to get rid of pain, especially in the am when it is really bad. I have resisted going up with prednisone but I see I’m probably going to need to. The day I saw my rheumatologist was a pretty good day (afternoon) and my labs were normal so she didn’t really believe me that mornings were dreadful.

art43 | @art43 | Nov 2, 2023

In reply to @joybannister "Thank you! I’m going to try your approach. I’ve been at 15, 20, 17.5 over 2..." + (show)

My suggestion is to not be reluctant to go up to whatever dose it takes to get into remission, because you might be able to start tapering just two weeks later. It might take 3 days at a higher dose before you get to where you want. Good luck.

joybannister | @joybannister | Nov 2, 2023

In reply to @art43 "My suggestion is to not be reluctant to go up to whatever dose it takes to..." + (show)

Thanks. I guess it’s goodby hair. It’s already falling out 😔. No moon face yet though.

joybannister | @joybannister | Nov 2, 2023

In reply to @cliffg26 "Well done! I would love to try that, but I think my doctors would like me..." + (show)

I would interpret that as "...I haven't seen any PMR patients that didn't fix in the box and I'm not interested in looking outside of the box for answers for you." That's a shame. My first rheumy was very nice but completely dismissive to my pain. She didn't care if I was still in great pain, she wanted me to taper from 20 to 15, told me I was probably prednisone resistant, would probably have this for life and come back in a month. I found another rheumatologist.