Anyone not able to get 24 hr pain relief from Prednisone?

Posted by nlcarl @nlcarl, Sep 16 4:24pm

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.

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

I've had PMR since Nov. 25. Got it under control with 20mg. Down to 5mg now. Till about two months ago I always woke up from pain around 5;00AM. Dozed in pain until about 8:00 AM and then woke up with intense pain neck, shoulders and hips. For the last two months I have divided my dosage of prednisone. In the morning with breakfast I take 3mg. At 3:00-4:00AM I take 2mg. I now wake without pain and able to do 15min of stretch exercises before getting the day started. Splitting the dosage might work for you too. You may want talk to your doctor and see what he thinks. Wish you well.

REPLY
Profile picture for klauspeter @klauspeter

I've had PMR since Nov. 25. Got it under control with 20mg. Down to 5mg now. Till about two months ago I always woke up from pain around 5;00AM. Dozed in pain until about 8:00 AM and then woke up with intense pain neck, shoulders and hips. For the last two months I have divided my dosage of prednisone. In the morning with breakfast I take 3mg. At 3:00-4:00AM I take 2mg. I now wake without pain and able to do 15min of stretch exercises before getting the day started. Splitting the dosage might work for you too. You may want talk to your doctor and see what he thinks. Wish you well.

Jump to this post

@klauspeter Thanks for this. Trying a new split dose tonight. Doc wants me to try 15 in morning and 10 with dinner no later than 5:30pm. We usually eat at 8, so it will be a change.

Funny how this seems to follow a pattern for us all. After I wake in pain at 3:00 am, I then doze and have 4 “good” hours of sleep, but am in great pain, and know it will be painful getting up, but that 4 hours sleep is worth it.

REPLY

Iwas diagnosed in June this year with PMR. I am really struggling with the prednisone anxiety in the morning and extreme fatigue in the afternoon. I have tapered down to 8mg daily, and back on Tylenol for the pain. As I am an accountant, the brain fog and double vision makes it impossible to work. I have taken up painting to keep my mind busy, but it is a case of do I paint this morning, or o laundry or do shopping. Much more and I am in trouble with a flare up. Oh, and now my feet sweat! Always has cold feet before, anyone else get that with prednisone. Also have internal tremors and chills. Nor sure if it's the PMR or PMR. Worried about GCA as I already have TMJ and transgeminal neuralgia, so how do I differentiate those headaches from GCA headaches? Ant insight greatly appreciated!

REPLY
Profile picture for rhonna @rhonna

Iwas diagnosed in June this year with PMR. I am really struggling with the prednisone anxiety in the morning and extreme fatigue in the afternoon. I have tapered down to 8mg daily, and back on Tylenol for the pain. As I am an accountant, the brain fog and double vision makes it impossible to work. I have taken up painting to keep my mind busy, but it is a case of do I paint this morning, or o laundry or do shopping. Much more and I am in trouble with a flare up. Oh, and now my feet sweat! Always has cold feet before, anyone else get that with prednisone. Also have internal tremors and chills. Nor sure if it's the PMR or PMR. Worried about GCA as I already have TMJ and transgeminal neuralgia, so how do I differentiate those headaches from GCA headaches? Ant insight greatly appreciated!

Jump to this post

@rhonna Are you working with a rheumatologist for this? GCA is very serious. They can’t check via a biopsy once you’ve started Prednisone, but they do check via CT scans. I just had them done today. Been getting headaches and Presnisone isn’t shutting the PMR down - inflammatory CRP levels staying high. So my rheumatologist wants to rule out GCA as it needs to be treated if you have it. Hoping the best for you. So sorry you’re dealing with this.

REPLY

I am going through the same thing I found out that I had pmr I am on prednisone methotrexate hydrocortisone because I also have chronic pain. But nothing is helping I am so much pain and no one understands. They look at you and say oh you look great if they ever knew in the inside of this body. Everything is hurting me.just want you to know I do not know you but my heart is with you.

REPLY
Profile picture for rhonna @rhonna

Iwas diagnosed in June this year with PMR. I am really struggling with the prednisone anxiety in the morning and extreme fatigue in the afternoon. I have tapered down to 8mg daily, and back on Tylenol for the pain. As I am an accountant, the brain fog and double vision makes it impossible to work. I have taken up painting to keep my mind busy, but it is a case of do I paint this morning, or o laundry or do shopping. Much more and I am in trouble with a flare up. Oh, and now my feet sweat! Always has cold feet before, anyone else get that with prednisone. Also have internal tremors and chills. Nor sure if it's the PMR or PMR. Worried about GCA as I already have TMJ and transgeminal neuralgia, so how do I differentiate those headaches from GCA headaches? Ant insight greatly appreciated!

Jump to this post

@rhonna
So sorry to hear you got diagnosed in June.
I don't know what dose Prednisone you were started on but it sounds awfully fast to be at 8mg already?
I was diagnosed 7/31 and had to go up from 15 to 20, then 25mg. Just began tapering 8/29 by decreasing 2.5mg every 14 days. Now at 20mg (from 25 to 22.5 now 20mg for another 6 days, then 17.5mg). So each decrease is 2.5mg and only every 14 days. Don't know if it could be your adrenal glands need more time so they can "wake-up " as some people here suggest?
Are you tapering on a schedule from a Rheumatologist? I hope you can get relief for pain, anxiety and fatigue. It may be too fast? If you haven't seen a Rheumatologist, I hope you can. Blessings.

REPLY
Profile picture for boomermeg @boomermeg

@rhonna
So sorry to hear you got diagnosed in June.
I don't know what dose Prednisone you were started on but it sounds awfully fast to be at 8mg already?
I was diagnosed 7/31 and had to go up from 15 to 20, then 25mg. Just began tapering 8/29 by decreasing 2.5mg every 14 days. Now at 20mg (from 25 to 22.5 now 20mg for another 6 days, then 17.5mg). So each decrease is 2.5mg and only every 14 days. Don't know if it could be your adrenal glands need more time so they can "wake-up " as some people here suggest?
Are you tapering on a schedule from a Rheumatologist? I hope you can get relief for pain, anxiety and fatigue. It may be too fast? If you haven't seen a Rheumatologist, I hope you can. Blessings.

Jump to this post

@boomermeg I am under the care of a Rhuematologist. We did do the taper too fast in the beginning. I was on 20mg, then to 15mg after 14 days. Now I am decreasing 2mg every 4 weeks. He did not to go back up at any time.
The doctor's goal is to get me to 5mg by Februay. In my last appointment he did say it takes some time for the body to adjust for each taper. I am motivated to get off the prednisone if I can. The anxiety is crippling! Being a Type A personality, the slowing down to accomodate this illness is very difficult for me. How have you managed or are you retired?

REPLY
Profile picture for nlcarl @nlcarl

@rhonna Are you working with a rheumatologist for this? GCA is very serious. They can’t check via a biopsy once you’ve started Prednisone, but they do check via CT scans. I just had them done today. Been getting headaches and Presnisone isn’t shutting the PMR down - inflammatory CRP levels staying high. So my rheumatologist wants to rule out GCA as it needs to be treated if you have it. Hoping the best for you. So sorry you’re dealing with this.

Jump to this post

@nlcarl I am working with a rhuematologist. I did not know about the biopsy not being viable after starting prednisone. My CRP is not high on last bloodwork. Sorry to hear you are getting headaches. I hope it is not GCA for your sake. I am terrified of losing my sight! Sounds like you are in good care, getting the CT scan. Very worrying for you. I hope it is not GCA for your sake.

REPLY

I've been off Prednisone and methotrexate since early August hoping my rheumo will start me on Kevzara next week, but the pain over the past week has gotten unbearable. Any suggestions on what dose Prednisone I should start back on until I can be advised by my Dr?
Appreciate any advice!

REPLY
Profile picture for rhonna @rhonna

Iwas diagnosed in June this year with PMR. I am really struggling with the prednisone anxiety in the morning and extreme fatigue in the afternoon. I have tapered down to 8mg daily, and back on Tylenol for the pain. As I am an accountant, the brain fog and double vision makes it impossible to work. I have taken up painting to keep my mind busy, but it is a case of do I paint this morning, or o laundry or do shopping. Much more and I am in trouble with a flare up. Oh, and now my feet sweat! Always has cold feet before, anyone else get that with prednisone. Also have internal tremors and chills. Nor sure if it's the PMR or PMR. Worried about GCA as I already have TMJ and transgeminal neuralgia, so how do I differentiate those headaches from GCA headaches? Ant insight greatly appreciated!

Jump to this post

@rhonna
I also have the internal tremors and chills. I am certain that I am running a fever but it does not register on the thermometer. Sometimes I simply can't get warm & luckily have a sauna in the house. Have you tried soaking in a hot bath? What a horrible disease this is!

REPLY
Please sign in or register to post a reply.