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Shortness of breath ..dyspenia..while on prednisone
Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (16)Comment receiving replies
His ego. When I told him that the Mayo clinic plus 4 other respected enities recommend 1mg taper after 10mg, he told me if I wanted 1mg tablets I should just go to the Mayo Clinic.
This the second Doctor I have had to quite because they cannot stand to have a patient question their so called wisdom.
To add: I had to self diagnose my PMR, because after 2 visits, that doctor couldn't figure out what it was. Then I had her order the blood tests, and then the Prednisone. Actually she was the first doctor I quite on, plus two rheumatologists. I haven't had much luck with doctors lately. I least I have a good new MD. Amongst other things, he's willing to order the Prednisone I need.
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I'm not making excuses for your rheumatologist.
There are many entities including doctors from Mayo and internationally that recommend tapering but 1 mg every 4 weeks after reaching 10 mg of Prednisone. However, there is a provision for a 10/7.5 mg alternate day schedule.
https://ard.bmj.com/content/74/10/1799
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"The panel strongly recommends individualising dose tapering schedules, predicated to regular monitoring of patient disease activity, laboratory markers and adverse events.
The following principles of GC dose tapering are suggested:
A. Initial tapering: Taper dose to an oral dose of 10 mg/day prednisone equivalent within 4–8 weeks.
B. Relapse therapy: Increase oral prednisone to the pre-relapse dose and decrease it gradually (within 4–8 weeks) to the dose at which the relapse occurred.
C. Tapering once remission is achieved (following initial and relapse therapies): Taper daily oral prednisone by 1 mg every 4 weeks (or by 1.25 mg decrements using schedules such as 10/7.5 mg alternate days, etc) until discontinuation given that remission is maintained."
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It sounds like you had a relapse at 7.5 mg. In that case the taper should be done gradually and probably slower.
In any case:
E. Patients should have an individualised PMR management plan. Patient perspective and preferences should be considered in the individualised choice of initial GC dose and subsequent tapering of GCs in PMR.
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These recommendations date back to 2015 and need to be updated. They predate Actemra and Kevzara. Biologics are now being used more often in the USA. When I started Actemra, I had to wing it and nobody gave me any instructions about how I should taper Prednisone. I wasn't sure what to do with the injections they sent me, My rheumatolgist told me to do injections every 2 weeks to "play it safe!"
A. I tapered by 1 mg per month from 10 mg to 7 mg.
B. Then I tapered by 1 mg per week from 7 mg to 3 mg. (I wanted to get the inevitable PMR flare over with except I didn't have a relapse.)
C. My rheumatologist and my endocrinologist concurred that I should stay on 3 mg until my cortisol level improved. I needed to stay on 3 mg for 6 months.
D. Then my endocrinologist said that 3 mg of Prednisone was such a small dose that I could simply stop Prednisone without tapering because my cortisol level was "adequate."
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Things really got interesting after I discontinued Prednisone the first time. I had a relapse but not a PMR relapse. My ophthalmolgist put me back on 60 mg of Prednisone and wanted to try a different biologic. I will save the details about what happened next but I managed to get off Prednisone even faster when the other biologic was stopped and more frequent Actemra injections were restarted. Now I do a monthly IV infusion of Actemra that works well too.