Anyone not able to get 24 hr pain relief from Prednisone?
I’m on day 17 of prednisone for newly diagnosed PMR. Within a few hours of that first dose went from level 8 pain to a 2.
Unfortunately pain always comes back around 3am. After 8 days of that, rheumatologist upped dose from 20mg to 30mg. Pain still comes back, but at a level 4 instead of 7.
I’m stuck. I’ve tried dose splitting and dose timing changes. The pain still comes back early morning.
Can’t begin tapering until it’s under control. Doc has called me in next week to discuss options - assuming Methotrexate or biological.?
Did any of you have this happen? Not able to put PMR “to sleep” for 24 hours with prednisone? Would love to hear some encouraging scenarios.
Haven’t gone back to ugly crying yet, but my shoulders, arms, clavicles and wrists/thumbs hurt so bad in morning I get the self-squeeze-out tears from the pain.
Grateful the hip/glutes/thigh girdle area has for some reason become less painful.
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@nlcarl
I'm only on 1.5mg prednisone and I took my 5th kevzara shot today. I've been on LDN since I got down to 10mg prednisone. I'm only on 3mg LDN. I've heard of 4.5 or 6mg doses too. Not every doctor knows about it or agrees to it.
Diagnosed in March of 2025. 15mg of Prednisone controlled symptoms, but never for 24 hours. At 15mg, pain relief lasted 16bhours max, and as you say, always came roaring back by 2 or 3 am. Mornings were brutal. I have pain from hands through arms, shoulders and neck (also osteo in both knees, somewhat muted with pred). I have tapered three times, most recently to zero. My rheumatologist added methotrexate 6 months ago. No side effects except fatigue, but no obvious benefits either. Now off Prednisone for a month and trying to make do with two Tylenol Arthritis tablets daily and a lot of naps and self pity. Can't do much. Like most, I was active and healthy before PMR. I'm 78 and had hoped to continue enjoying whatever time I have left. PMR is a definite obstacle. 18 months of Prednisone caused - that I know of - cataracts a sharp drop in bone density, and weight gain. Have a follow up appt. next week and will ask if there are realistic options, effective, safe and affordable, or if it's just me and the pain and the Tylenol for the duration. Ugh
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2 Reactions@jandee big hug
Ask,your Dr abt Kevzara biologic. It’s been my savior. Takes up to 3 months to kick in. Good news I have not needed any other drugs, and am able to live/love my life. In the beginning I did use the Tylenol for Arthritis up to 4 pills a day to help. 80yo female, bike, walk golf course (don’t carry bag), swim, and PWR walk up to 4 miles.
I’m making the most of this last qtr of my life……you can/will too.
@tweetypie13 Thank you. I will ask and hope for a reprieve. My goal is to make it to a pleasant and productive 81.
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1 Reaction@tweetypie13 @ jandee
Tweetypie this is so encouraging. Saw my doc today and he’s going to add Kevzara to my treatment. Hoping I can manage the morning pain till it kicks in, but it sounds really encouraging. Dreaming of getting back to the life you’re living. Was just about to take lap swimming up again. Thanks for your post.
@ jandee - I hope you will keep seeking solutions with your current rheumatologist or another. Life’s too short and precious to live this best part in so much pain. Sending blessings and hope for you.
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1 Reaction@kjoed53 You are correct. Saw my doc today and he at least pulled up some info on it and pulled up a study - but not ready to explore it for my use yet since it’s not in the “protocol” cycle. Adding Kevzara for now, but hoping he’s looking into it for the future. Thanks for your post and info.
@nlcarl PS: consider Tylenol for Arthritis as a wake up boost.
I wondered if you had tried dosing during the middle of the night? I take prednisolone (in Australia) which is a tiny bit faster acting than Prednisone - otherwise the same drug. In Europe they often recommending dose at 2:00 am - the idea being that the pred becomes active in the blood stream at the same time the inflammatory cytokines IL-6 etc are released into the blood at around 4:00 am. It sounds like a hassle but I figured if I was waking with some pain was uncomfortable why not try it. It's been very effective for having better, more active mornings - the afternoons not so much.
I don't take the fill dose (between say 2-3 am) but perhaps around half. The idea is to take a enough to combat the initial surge of new inflammation that rushes in and hits around 4:00 am. Then at 7:00 am I take the rest to deal with the ongoing inflammation that arises during the day. It still seems to wear off in the late afternoon or early evening but after 8:00 pm everything seems to calm down in general as the body enters the lowest part of the inflammatory cycle.
I've had PMR for 3 years now and never been pain free. In theory they say you can expect a 70% plus level of pain relief. Some people get 100% but I've only ever had around 85% relief and even a higher dose doesn't give me 100% relief.
But Kevzara is the way to go, and seems to be hell of a lot more effective than methotrexate which more often not does nothing or very little. Unfortunately in Australia Kevzara is not available for PMR. Good luck with it.
@nlcarl
My rheumatologist seems to have a wide network of friends in medicine that I have seen (including pain management, neurology and hematology-oncology) and that may have made him more knowledgeable of and open to LDN, although I may not be giving him enough credit.
@jandee
I’m a 77 year old woman who has had PMR for over 10 years. It is in remission and I work hard to keep myself healthy. I’m careful with my diet and I try to exercise outdoors daily. It helps my mental health and enables me to sleep better. I‘ve been taking 30 mg of gabapentin at night for several years to help with pain. PMR patients frequently develop rheumatoid arthritis and this year it hit me hard. I’m on Humira for the pain, which is just as painful as PMR. It’s finally helping, but it’s taken a few weeks to kick in. It’s a lifetime journey, but with proper medication, you don’t have to be in pain. I increased my prednisone when my pain got bad and started tapering when my c reactive protein and Sed rate dropped to normal. Long term remission is possible. Good luck.