1. < Polymyalgia Rheumatica (PMR)

Tapering prednisone and stress

Posted by teddyz @teddyz, Dec 9, 2023

I'm supposed to taper from 5mg prednisone this week to 4 mg. We're doing a super slow taper this time because if I can't successfully get off the prednisone, my rheumatologist said I'll have to go methotrexate for "life". Trouble is, I'm under a lot of stress right now. I'm concerned that this stress is going to impact my adjustment to reduced steroids. Yes, I'll try to do as much self care as I can but I would like to know if anyone has any info about stress and tapering or if I'm worrying about things I should let go.
Thanks in advance.

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teddyz | @teddyz | Dec 12, 2023
In reply to @lfd28 "@teddyz I also am on a very slow taper -- now at 6.5 mg of Prednisone..." + (show)
@lfd28

@teddyz I also am on a very slow taper -- now at 6.5 mg of Prednisone daily. I am a big fan of listening to your body and going as slowly as your body tells you it wants to go. My practice is to decrease .5 mg at a time and wait until I have virtually no symptoms of PMR before decreasing again. (I have had a return of old orthopedic pain since I've been below 7 mg., but it is different from PMR pain.) Also, I start by alternating my old dose and my new dose for a week before going to the lower dose. My rheumatologist would like me to taper faster, but I have not had a flare since starting a very slow taper, so I'm staying with this plan. I really don't want to introduce a new medication like the biologics or Methotrexate if I can help it.

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I love the idea of alternating the old dose and the new dose for a week. I'm going to try that. Thank you so much!

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lfd28 | @lfd28 | Dec 12, 2023
In reply to @teddyz "I love the idea of alternating the old dose and the new dose for a week...." + (show)
@teddyz

I love the idea of alternating the old dose and the new dose for a week. I'm going to try that. Thank you so much!

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I hope it works for you. Good luck.

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st1300 | @st1300 | Dec 19, 2023

I also am scheduled to go from 5 to 4 today. I was told I could drop 1 mg every 2 weeks from 5 to 3, then reevaluate. I'm on 8mg per week of Methotrexate for RA that I developed 2 months after the PMR. Rheumatologist wants to first concentrate on getting off Prednisone, then the Methotrexate. Also Hematoligist has got me down to 2.5mg Eliquis for a DVT. Hopefully get off this next month. This getting old sure isn't easy.

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1 reply
teddyz | @teddyz | Dec 19, 2023
In reply to @st1300 "I also am scheduled to go from 5 to 4 today. I was told I could..." + (show)
@st1300

I also am scheduled to go from 5 to 4 today. I was told I could drop 1 mg every 2 weeks from 5 to 3, then reevaluate. I'm on 8mg per week of Methotrexate for RA that I developed 2 months after the PMR. Rheumatologist wants to first concentrate on getting off Prednisone, then the Methotrexate. Also Hematoligist has got me down to 2.5mg Eliquis for a DVT. Hopefully get off this next month. This getting old sure isn't easy.

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Good luck with your taper. I agree about this getting old business but I really don't think being 59 should be this much trouble 🙂 I had a pulmonary embolism last year so they tell me I'm stuck with blood thinners for life.

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st1300 | @st1300 | Dec 19, 2023
In reply to @teddyz "Good luck with your taper. I agree about this getting old business but I really don't..." + (show)
@teddyz

Good luck with your taper. I agree about this getting old business but I really don't think being 59 should be this much trouble 🙂 I had a pulmonary embolism last year so they tell me I'm stuck with blood thinners for life.

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I have several friends that are on Eliquis for life. Not a big deal. I just really want to get a win.

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salmountain | @salmountain | Dec 20, 2023

I was diagnosed with PMR in September. I started on 20 mg of Prednisone and I am now down to 8 mg a day. Mornings and the night are painful.
I was wondering if others decrease their dose if they are still in pain ?

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megz | @megz | Dec 20, 2023
In reply to @salmountain "I was diagnosed with PMR in September. I started on 20 mg of Prednisone and I..." + (show)
@salmountain

I was diagnosed with PMR in September. I started on 20 mg of Prednisone and I am now down to 8 mg a day. Mornings and the night are painful.
I was wondering if others decrease their dose if they are still in pain ?

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That's a quick reduction from 20mg down to 8mg in only 3 months, faster than the recommended tapering schedule of 1mg reduction every 4 - 8 weeks from 10mg. I'm wondering if that's what is causing the return of pain. What is your tapering schedule?

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salmountain | @salmountain | Dec 21, 2023

By mid October I was down to 15 mg . November 1 10 mg , then to 8 mg by Dec 1. My Rheumatologist was me to decrease my a milligram every 3-4 weeks. I am nervous about taking Prednisone but am very apprehensive about decreasing the dose because of the morning and late night pain. Mid day I feel pretty good.

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megz | @megz | Dec 21, 2023
In reply to @salmountain "By mid October I was down to 15 mg . November 1 10 mg , then..." + (show)
@salmountain

By mid October I was down to 15 mg . November 1 10 mg , then to 8 mg by Dec 1. My Rheumatologist was me to decrease my a milligram every 3-4 weeks. I am nervous about taking Prednisone but am very apprehensive about decreasing the dose because of the morning and late night pain. Mid day I feel pretty good.

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Isn't that true - we're all worried about the harms caused by the steroids but even more worried about the disabling pain coming back. It looks like you've moved too quickly on the reductions as I did in the beginning. Pain started coming back at 8mg for me too.

I don't know what your strategy is, but wanting to avoid a full flare, I moved back to 9.5mg for a week then dropped to 9mg (the last effective dose) for 4 weeks till pain was well and truly gone. Since then I've reduced only .5mg at a time, every 3 weeks, for a 1mg reduction every 6 weeks. Now at 6.5mg, I'm still pain free with the more gradual tapering.

In the first 2-3 weeks of steroid use, reductions can be made fairly quickly, but the window of quick reductions slams shut at 3wks and it has to be more gradual after that. I don't know about you, but after the early easy reductions I was confident I could continue more quickly than the recommended schedule. I was wrong. Slow and careful is the way.

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jixster | @jixster | Dec 21, 2023
In reply to @ddmo "i too was tapering slowly off Pred. (3years) i was down to 3mg a month. was..." + (show)
@ddmo

i too was tapering slowly off Pred. (3years) i was down to 3mg a month. was doing well until...i had a relapse and had to go on a very disappointing 15mg for two weeks then 10....5.... next visit. I too have a lot of stress in my life which I am sure contributes to this challenging disease ( condition, I believe I incurred from Covid Vax and booster. It ruined my immune system) I was wondering, has your Rheumy suggested Actemra Infusion.? That is what mine rec to decrease pred completely. Of course after reading the drug info I am , to put it mildly, fearful. Any thoughts?
Thanks
Dianne

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Interesting that this happened after your Covid Vax and booster I became inflicted with PMR about 10 days after my second Shingkex vaccination. I suffered a lot of pain for weeks before my doctor put me on 50mg of prednisone- for 1 week 1 have been tapering off rather rapidly in my opinion- 10mg a week - I am currently on 10mg and I feel the pain coming back in legs, groin and shoulders - unfortunately my doctor is away for the holidays - I was hoping to go to 15mg to ease the increasing inflammation but not sure if I should, I haven’t been given any info on Actemra Infusion- I may be too early in this dose for consideration.

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