Tapering off prednisone with GCA temporal arteritis

@jeanrod825 rheumatologist is the main doctor you need. Tapering is a key factor and they are the right doctor's for that.

I think your drop down is too much.Slow and low is better. I'm going to do 5 when they cut mine from 60.

Well this is my group! I was diagnosed with GCA after researching my symptoms of the daily headaches & scalp & jaw issues that had started. I found it should be treated as an emergency and went to the ER -(my primary care was dragging her feet and my husband & I decided - enough!) I lost one eye a number of years ago due to a long running unrelated condition so what vision I have is critical! I was treated & referred to a fabulous rheumatologist I got in to see the same week - now about a month ago -- so much has happened! I was started on 60 mg of prednisone- gradually reducing over 26 weeks (now on 35) with the immediate start up of monthly Actemra infusions. This allows the 1/2 year course of prednisone instead of over 52 weeks! I had untreated osteoporosis going in - unfortunately I was not convinced the side effects you'd hear about weren't worse than trying to deal with it with nutrition & exercise --- wrong !
I am now on daily self injections of Tymlos that will actually build bone hopefully! I have learned so much in such a short time --
My husband got a flu shot but it was too late for me because it would be relatively worthless since I immediately started the high-dose prednisone that shuts down your immune system which is why it works for this (so my doctor said once I've tapered to a much lower dose I could get one.
I learned that Bactrim is often prescribed to protect you from the risk of getting PCP - a potentially fatal lung disease !! (And no it's not prevented by the standard pneumonia vaccine which I did get some time ago. Literally 85% of us can carry this around and may never be affected -- unless your immunity is shut down by prednisone! So I spoke to my doctor & he agreed -- said not everyone goes on it but I'm willing and don't want to worry about that! My husband & I are retired but do like to make often daily trips out so we wear N95 masks -- why not -- there's a lot at risk here unfortunately.
The Bactrim can cause to to hold onto potassium (causing potential heart problems) so I am following a low potassium diet -- literally "leaching" potassium from certain veggies, meats, and some beans. If I wasn't retired and didn't like to cook I would be up a creek without a paddle as the saying goes! But it helps me use some of this prednisone energy.
I have also seen a cardiologist and am now on a low dose statin (I've been borderline for years and had just made a concerted effort with diet, taking Cholestoff, and Metamucil daily and brought it way down -- then prednisone jumped it up again!!). Rosuvastatin is what I'm taking and the doctor said it would be a good one because it also helps reduce inflammation -- and it's a water soluable one so much less incidence of statin induced muscle pain. Have been taking it for a week & I walk daily in the morning to try to work off some prednisone anxiety & make sure to stretch more often.
I hope this all helps someone -- I have approached this like a project my life depends on -- which of course it does -- and I'm blessed to have found good doctors. I have switched back to seeing my primary care from the other doctor who was filling in while my PC was on maternity leave and we will meet next week to go over everything----the rheumatologist has also looped her in.
Lastly I will say I am dealing with it being hard to fall asleep and I used to be an 8 hour a night girl - now I'm awake after 6 1/2 and ready to get up (after having gotten up once or twice during the night to go to the bathroom, of course as I'm drinking 60 -80 ounces of water a day to protect my kidneys!) I'm going to see what my PC thinks about low dose Doxepin that in a low dose helps you stay asleep a good 7-8 hours and doesn't conflict with prednisone. And I am seeing a hand specialist tomorrow I've seen before for trigger finger cortisone shots because now 3 fingers have irritation at the tips near the nail bed - I thought one was infected and the rheumatologist provided an antibiotic cream but now it's 3 fingers and of course another side effect of skin issues from Bactrim (when taking a walk I am covering up from head to toe and have sunblock on exposed areas because it causes extreme sun sensitivity – – and of course I live in South Florida).
Let me know if I can help anyone with any questions!

Wow. Everything everyone is saying is exactly what I have experienced. I was diagnosed on March 30, 2026. I was perfectly healthy and then I thought I had the flu. And it turned into this ugliness. I wish everyone the best. And I’m glad to know that we have this group that we can share.