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@joybannister

I’m experiencing the same. I’m at 25 after 2 months starting at 15 and moving up 17.5, 20, 25. I guess 30 would be my sweet spot but I’m very nervous to be taking these high doses for so long. I’m losing my hair and that’s a minor problem compared to other effects. Do you mind if I ask if you have been able to taper down from 30 and if so how long did you stay at thirty? What mg are you at now? Thanks. I’m kind of on my own with this for now. My rheumatologist won’t let me go above 17.5 so I will run out of meds eventually.

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Replies to "I’m experiencing the same. I’m at 25 after 2 months starting at 15 and moving up..."

Do you need a new rheumatologist. Whatever those takes away the pain and fatigue is the right dose for you for me. It was 30 and I stayed on that for a while. Reductions have to be real slow and you need to stay an introduction for a while too. The longer you have pain and you are not on the proper dose of steroids the longer it takes to get you better. I had a great doctor in New Jersey and when I move to Florida, it is taking me 10 years to find a Rheumatologist that understands GCA.

@joybannister Hello Joy - I am 66 yr old woman , living in Boston. My doctors are are part of Mass general Hospital /partners. I was bumped up to 30 mg/day by the rheumatologist after after a terrible flare up !! my PCP would NOT go above 15mg/day. Luckily i found a rheumatologist appointment within one month of first diagnosis( April 2023) . the TAPER schedule was as follows -- taper down by 2.5 mg/ week until i reached 10 mg/day ( at 15mg/day i was going on vacation so i stayed at 15mg for 2 weeks ) - then reduce by 1 mg/MONTH ( about 28 days) . To note- i have include the strategy of introducing the next lower dose throughout the month . i will attach a reference to it ( mentioned first by @johnbishop ) ; i still split teh dose. I have had NO morning pain or stiffness in either the shoulders or hip girdle since the 30 mg-MIRACLE dose ! I was going to PT in the pool for my knee and still do those exercises. i walk and garden and drive to work 3 days a week. However in mid May and all of June i took Medical Leave -fearing a relapse . hope this info is useful to you -- nyxygirl