1. < Polymyalgia Rheumatica (PMR)

Still confused about tapering

Posted by michcan1 @michcan1, Nov 17 11:36am

Hi there, I was diagnosed with PMR about 4 months ago ... my rheumatologist gave me a "schedule" for tapering but I haven't been able to follow it because my symptoms return if I do. I understand tapering is variable but my question is this: How do I know when to go down in dose? Should I be completely symptom free before going down to next dose or 80% or 90% symptom free? Or 50%? And if I go down and symptoms worsen should I wait at that lower dose for a few days and hope the symptoms will settle or do I need to go back up? (I am on Prednisone only and currently 15mg daily and can't seem to go lower than that. I started at 20mg and was about 95% symptom free on my starting dose).

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art43 | @art43 | Dec 8 11:38am
In reply to @brian326 "Like many others I’m figuring it out on my own with the help my rheumatologist. I..." + (show)
@brian326

Like many others I’m figuring it out on my own with the help my rheumatologist. I started on 15 mg, then went to 12.5 mg and then 10 mg, each about two weeks apart. Now I’m reducing 1 mg every two weeks.I had the same problem when I went from 12.5 mg to 10 mg, and had to increase it to 11 mg for a week because I had a lot of pain and stiffness. So far in my experience over the last several months when I lower my dose, I get some pain. It lasts several days, and I would say the pain is sometimes a 4 out of 10. But then it all stabilizes and I spend another 10 days or so at that dose and decrease again. So far it’s going well and the advice for my rheumatologist was she didn’t want me to stay too long at one dose. She is supportive of what I’m doing..

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From 10 to 5, I tapered at 1 per month. Below 5 at 0.5 per month. Now at 1.5, no issues to speak of.
Your taper seems a little fast. Most folks reporting issues almost always seem to be tapering the fastest by comparison. Chasing a bouncing ball of prednisone dosages seems to not work very well. Good luck.

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nancy53 | @nancy53 | Dec 8 11:45am
In reply to @dadcue ""The goal is zero, so however we get there is fantastic!" -------------- I very much agree...." + (show)
@dadcue

"The goal is zero, so however we get there is fantastic!"
--------------
I very much agree. Sometimes people say one tapering scheme is better than another one. There is no scientific proven method of tapering off prednisone. The doctor in the following video says there isn't any "gold standard" for tapering off prednisone.


--------------------
I think the same can be said for the use of "steroid sparing" medications. I don't think there is any way to predict which one may or may not work well until someone tries the medication to see what works or not. The goal remains the same.

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I love her!

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debbiebas216 | @debbiebas216 | 6 days ago

Re: NSAID my rheumy said NO ibuprofen with prednisone but Tylenol ok when needed.

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debbiebas216 | @debbiebas216 | 6 days ago
In reply to @debbiebas216 "Good question. My rheumy started me on 15mg for 5 days but wasn’t strong enough (6-7..." + (show)
@debbiebas216

Good question. My rheumy started me on 15mg for 5 days but wasn’t strong enough (6-7 out of 10) then upped to 20mg for 2 weeks then back to 15mg for 2 weeks, now on 12.5 for 2 weeks. Same as someone else, I have some pain/stiffness (3-4) for a 5-6 days then seems to get better (my body’s adjusting?). My regimen will be 2.5 tapper every 2 weeks going forward until I get to 5mg? I would definitely talk with your doc re when to go back up or down and if it’s ok to be at pain level 4 for a few or so days to see how your body does. Good luck

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PS-My rheumy said NO to ibuprofen when on prednisone but ok to acetaminophen when needed.

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jabrown0407 | @jabrown0407 | 5 days ago

When you are on a dose of steroids for longer than two weeks your adrenal glands go to sleep and a big portion of the tapering process is to get them to take back over the natural steroid production. Read up some on adrenal insufficiency to better understand. You can even to a Mayo Clinic Connect search right here in the PMR chat room to read what others have said. Go to the second Search box on this link to limit search to PMR Chat Room. You can also Search Tapering or Titrating - a lot has been written to the topic.
https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/
Also, keep in mind that the lower the dose of prednisone you are on the greater the percent of decrees 1 mg can be. At 20mg/day a 1mg reduction is 5% reduction at 10mg/day a 1mg reduction is 10%. Your body may be reacting to what is sees as a drastic reduction. Separating the adrenal insufficiency symptoms from the PMR symptoms is next to impossible.

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nancy53 | @nancy53 | 1 day ago

Sorry your symtoms return.

I've been tapering down from 20mg a year ago to 2mg currently.

Slow and steady seems to work for me. I reduce by 0.5mg every 2-3 weeks. If pain returns, I go back up to the previous dose.

Planning when to taper makes a difference. I know I'll be fatigued and uncomfortable after I taper, so I try to keep the first 3-4 days free. I'm not starting my next taper until after Christmas.

Good luck and I wish you well!

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DadCue | @dadcue | 1 day ago
In reply to @jabrown0407 "When you are on a dose of steroids for longer than two weeks your adrenal glands..." + (show)
@jabrown0407

When you are on a dose of steroids for longer than two weeks your adrenal glands go to sleep and a big portion of the tapering process is to get them to take back over the natural steroid production. Read up some on adrenal insufficiency to better understand. You can even to a Mayo Clinic Connect search right here in the PMR chat room to read what others have said. Go to the second Search box on this link to limit search to PMR Chat Room. You can also Search Tapering or Titrating - a lot has been written to the topic.
https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/
Also, keep in mind that the lower the dose of prednisone you are on the greater the percent of decrees 1 mg can be. At 20mg/day a 1mg reduction is 5% reduction at 10mg/day a 1mg reduction is 10%. Your body may be reacting to what is sees as a drastic reduction. Separating the adrenal insufficiency symptoms from the PMR symptoms is next to impossible.

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All of this explains why tapering off Prednisone is complicated. It also explains why there isn't any tapering scheme that works for everyone because as you say,

"Separating the adrenal insufficiency symptoms from the PMR symptoms is next to impossible."
-------------------------
It is easier to take more prednisone but that isn't helpful when the goal is to taper off prednisone.

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ninadavis | @ninadavis | 12 hours ago

There was someone on here who said that a nurse told her that tablets should not be cut unless there is a line to do so as the ingredients maynot be evenly dispersed in the pill. That is ridiculous, though it comes from a good-hearted person. But it defies common sense.

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pmrsuzie | @pmrsuzie | 12 hours ago

I am in this same situation. Below 5mg. Got to 2 mg but having some issues. CRP is at 8.9, should be less than 5. Went back to 4 mg.
My Achilles has been hurting since March. Tendonitis, tendonosis, Haglund's deformity, bone spur. Just got orthotics. Not sure if this affects inflammation markers.
Upper leg is aching, going up steps is difficult.
Had to quit Tylenol because liver enzymes were slightly elevated. Repeat testing after a month of no Tylenol liver enzymes were normal. Am now very leary of taking any other meds.
Tapering to 3.5 today.

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