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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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This disease is PAIN to put it mildly. Never had the sleep issues. Did do a Split dose, 1/3rd at bedtime and that worked for me. Yes, I did not want another DRUG. Wrong on my part. The dr did not explain to me that the biologic would help me get OFF of PREDNISONE. Yes it did nd the biologic Kevzara has been uneventful, as in no side effects. By the time the Kevzara kicked in (upto 3 months) I had tapered off the prednisone.
PS: ugly crying is allowed anytime…..we all need a release. 😎
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8 ReactionsDo a little research and speak with your doctor about adding LDN to your regimen. I started using 3mg LDN because I had to begin a fast taper and start kevzara. I find that it helps me sleep relatively pain free. Someone else on this forum was using it before me.
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2 ReactionsI split doses morning and evening and at the high doses it worked. Not so much at lower doses.
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3 Reactions@kjoed53 Thanks for this. Just added to my notes for doc appt next week.
Pain is back to level 6-7, so debilitating and excruciating are words back in play.
But I’m up for the fight. This PMR beast is going down one way or another. Hope my doc is willing to think big.
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1 ReactionLDN by itself may not knock down a 6-7 pain level but it might allow you to use less prednisone. Kevzara may be a better option in the long run if you're trying to eliminate prednisone. If you look up LDN you will see that it requires a compounding pharmacy and is off label so not covered by insurance. It's relatively cheap, costing me $110 for 90 days at a local compounding pharmacy. You can find it for less online.
@nlcarl if you have enough meds…sometimes you have to self dose when in pain. Level 6-7 is not acceptable to me. (Note: if it was me…..
I would up the prednisone to reduce the pain.)
@voll Were you able to sleep at night? What mg did you take at night and what was your best timing for it?
@kjoed53 - we do have a compounding pharmacy nearby. Cost seems reasonable for that.
Do some people eve do a regimen of prednisone, Kevzara and LDN? Seems like the LDN would come into play in allowing sleep if Pred needs to be taken at higher doses in evening for getting the pain down to functional level. I can handle a lot more in life if I can get some sleep. And Kevlar takes awhile to kick in (as I've been reading). Seeing doc tomorrow - want to ask about all of this.
@tweetypie13 - totally agree. Pain at 6-7 means things aren't going in the right direction.
One day I did try upping a little to 25mg in morning and 10 at night. (Worst night ever for sleep). And same 3am pain return result, but at least down to level 4 pain.
@nlcarl sounds like increase should not be in nighttime.
Note: my dr said I could use Tylenol for Arthritis as a supplement…..follow bottle. Might be less impact at night