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Replies to "Why were you told that it was harder to taper since you started on a moderate..."
Polymyalgia Rheumatica (PMR) | Last Active: Oct 22 8:17pm | Replies (52)
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Why were you told that it was harder to taper since you started on a moderate dosage, and what is a moderate dosage? When the rheumatologist told you she would have started you on a higher dosage and started a quicker taper, did she explain the difference between this and starting at a moderate dosage? I thought the idea was to find the minimum dosage that works, but this seems to go against that. Can you please expand on your comment?
Replies to "Why were you told that it was harder to taper since you started on a moderate..."
@kjoed53 it was explained to me that when you taper from a higher dose, say 20mg and go down 1mg it only reduces the milligrams by 5% if math is correct .. so say you start at 10 mg and go to 9mg it is 10%… and when you get lower dropping by a full mg or more reduces the % of prednisone too quickly.
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@kjoed53 I went to several physicians along the way. Rheumatologist number 1 didn't believe it was PMR and prescribed nothing. I had a pain doctor put me originally on 15mg of Meloxicam, but I was still experiencing pain.
Rheumatologist number 2 prescribed me 15 mg of Prednisone. She didn't believe it was PMR, but I convinced her with my data from Chat GPT to start treating it. Eventually, that didn't sit well with me, working with a doctor who was just listening to what I want and clearly didn't understand PMR.
Rheumatologist number 3 wanted to get a true diagnosis and wanted to have me completely and somewhat aggressively taper off Prednisone while he prescribed 75mg Diclofenac Sodium. Once I was tapered off the Prednisone for 2 weeks he tested my blood and since my blood values showed limited inflammation he assumed I didn't have an autoimmune disease. This phase was one of the most painful. I couldn't take Diclofenac to eliminate the pain so I had to start taking 15mg of Prednisone. He basically said it's not autoimmune and I should find another doctor, maybe it was orthopedic related. I got another MRI on the spine, and shoulders, but a spine surgeon said it was normal wear and tear and nothing structurally wrong, and the orthopedic surgeon said I did have a torn labrum (but I've had that for 6 years).
I was back to square 1 with no answers. I spent time on ChatGPT finding the best physicians in the nearby area who handle this. I kept refining the list and ultimately found someone who posted a video that she talked about treating PMR patients.
She told me since I had been on 15mg for awhile and somewhat still having levels of pain- that she needed a more careful taper journey. I describe it as being able to function, but not pain free.
She said if I came to her originally, she would've hit it with a high dosage. I dont know is she this specific number or it is what it is my mind but I'm thinking 40mg or even 60mg. I got the impression she treats it aggressively with prednisone and quickly tapers. Perhaps how it's used in other settings like when people are sick and get a 5 pack (50mg day 1, 40mg day 2, 30 day 3, 20 day 4, 10 day 5, 0 day 6)?
Since I was on 15mg for a prolonged period, my first reduction was to 12.5, then to 10. From there I went down by 1mg every 2 weeks.
She was as committed to get me off the Prednisone as I was, but she said the taper had to be more careful. I hope this helps.