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@johnbishop

Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and others. The goal of tapering in the words of my rheumatologist (as I remember 🙂), is to taper off as soon as you are able to do it with little or no pain symptoms from your PMR. The rheumatologist normally will recommend a tapering schedule but it can be different for each of us due to the pain. Mine recommended that I keep a daily log and record my dosage and my pain on a scale of 1 to 10. I started with a monthly taper but within a few months I changed to every 2 weeks, then at the lower doses tried to taper weekly but sometimes had to go back up to the previous dose. I think the key is to listen to your body. For me if my pain scale was 1 or 2 I would taper to the next lower dose. If my pain went up on the scale, I stayed the course for a couple of days to see if it would get better. If it didn't get better I went back to the previous dose.

Another thing that will help is to have your doctor write a prescription for 1 mg and 2.5 mg tablets. They make it a lot easier to taper slower with a smaller drop in dosage. My first round with PMR took me 3-1/2 years to go from 20 mg to off of prednisone with the last 6 months going back and forth between 1 mg and 1/2 mg (split a 1 mg tablet) until I could finally stop taking the prednisone with little to no aches and pains.

You might want to write down all your questions to prepare for your appointment with the rheumatologist. There is a website with some tools to help you plan your conversation with your doctor. It has some cards you can print out to plan your conversation - https://patientrevolution.org/visit-tools

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Replies to "Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and..."

Good advice as always John.

Thank you, that was a lot of help. He has me scheduled for appointments every 6 weeks or so, and on my last visit, he just said we want to get to the lowest dose possible and go from there, but didn't tell me how to do this. So I have been slowly cutting back and if the pain stays away, I wait a week or so and cut another pill in half and try that. Your suggestion of having lower doses on hand sounds awesome. I will call his office and see if I can get some smaller doses. What is the typical maintenance dose? He said I may have to take a low dose for a year or more, but he didn't say how low.

Hi, I have tried lowering my prednisone. I was able to go down to 7mg a day but the pain came back two days later. I. Went back up to 8 mg a day for a week, then tried to go down again to 7. Same thing happened. The pain increased and I had to increase to the point I am on 10 Mg a day. I split my dose because if I don’t , I can’t make it through the night. I see my doctor tomorrow and he wants to put me on methotrexate. I am afraid to take it for many reasons. I know prednisone is bad for you and they say it is hard to get off. I have been on it for about 10 months. Any help on what to do would be appreciated! Thank you.