Day 4 of prednisone and happy! Stay at 15 or go up to 20?

I posted about 45 minutes ago in reference to my GCA and a second attempt to decrease Prednisone but was interrupted when reading your response and now cannot find it.I have been on Prednisone since April 6 and also have had six Actemra infusions.I I started with 40 MGMs daily in April and was down to 17.5. MGMs by August 21 but by August 29developed pain in both Temporal arteries and Prednisone was increased to 40 MGMs for five days then down to 30,27.5 ,25 and have been taking 20mgms for the past three days..I think I would rather be a little slower with the taper and possibly avoid another relapse.I have learned so much from this website and truly find it so helpful and supportive.Cathie

Update 7. Currently seeking LED (lowest effective dose). [June 10 start 15 mg; July 22 drop to 12.5; Aug 12 drop to 11.25].

Well, that was interesting.

My second week on 11.25 was rocky. Checking my daily log, I see that most days at 11.25 I was PMR-sore, especially my hips. My mood was good, but energy notably lower than previously. Symptoms maybe only 20% of the untreated PMR, but clearly there--until 4 PM, when the ache/stiffness would magically go away (aha).
I had a think. My body has changed (for the better) so much since I started pred it's hard to remember how I felt at 15 mg--just that I felt wonderful, and now I did not. Was 12.5 the same as 15? Was 12.5 the same as 11.25 The situation was confused by a lot of left leg dysfunction (spinal stenosis) last week. So on day 12 of 11.25, influenced by various accounts of the definition of LED and the need to identify it, I decided to jump back up to 12.5 to see how I felt.

Bam. I felt/feel great. I'm on day 3 at 12.5. Will stick here for a few more days, then drop back to 11.25 and confirm what that feels like. My thoughts this week:

1. I'm quartering 5 mg pills (hoping to get 1 mg pills next week). I cannot BELIEVE that that little quarter of a pill can make such a huge difference.

2. I sure didn't expect to be wondering if my LED is 12.5 mg. But I've learned a lot in the past two weeks as I keep reading, and I am confident that it's more important at this early stage in the journey to know the numbers than to worry about what the numbers are and why they're not something else. This is not the time for me to decide how much PMR discomfort I'm willing to live with. Later for that. I see my rheumy in four weeks, and will report my experiences and see what he says.

3. I finally found the material on prednisone dosing being weight-based. This may explain a lot. I'm about 270 lb currently. If my LED really is high--say, higher than 10 mg--might that be the reason? If there isn't a thread here to report lowest effective dose and weight, there should be. I'd love to see the correlation, if any!

4. It took me till now, 11 weeks after official diagnosis, to wrap my head completely around what PMR is, how it is treated, why I am on prednisone, what the LED means and why no amount of wish casting will change it, why my natural cortisol wasn't enough, what pro-inflammatory cytokines are likely doing, and what my prognosis likely is. To wit:

5. I think I am a good candidate for being classified as having Refractory PMR. My conservative guess, based the on well-known symptoms, is that I had it for at least a solid two years before official diagnosis. Probably nearer to three. So I'm not counting on it "burning out" or "resolving itself" quickly. I mean, I hope it does, but my treatment plan takes account of the long term. The latest I've read says PMR average length is over 5 years.

6. I'm now on a bunch of supplements, all approved by relevant docs and nutritionist: C, D, B, K, calcium, magnesium. Also trying MSM, since there is actual science confirming its anti-inflammatory effects. My sleep apnea events have dropped to under 3, my BP is great, BG runs high despite the addition of chromium. No red side effects yet (that I know of).

7. I have a number of other musculoskeletal and nerve issues that cause varying degrees of discomfort. I have now sorted them out from the PMR. So, if it's bilateral and goes away at 4 PM, it's the PMR. Everything else is not. For example, I have osteoarthritis in both shoulder joints. It's bilateral but it doesn't go away at 4. It responds well to Ibuprofen. Also, there's a little man living in my left sock who likes to stab me right below my ankle bone; ice on the piriformis makes him stop (if you know, you know).

8. Cortisol. During several of my major weight-loss endeavors, I did a lot of successful long-term fasting. I tolerated fasting extremely well. I used to worry that this would raise my cortisol to unhealthy levels (ha). I used to love the cortisol high, though. I have now made the connection between the prednisone high and the fasting high. I can't really fast these days--I must east breakfast with the pills and also to keep my sodium levels up. But I sure do wonder if anybody out there is fasting to raise cortisol, or to help taper off prednisone once PMR is in remission. Must google.

9. This is a crazy long post. But as I said, I learned so much this week. I feel that I've got my footing now (literally). I am rocked by the understanding that without this site, with its personal accounts, links, and kindness, I would be in a total fog about PMR. Like just about everyone here, I feel so grateful to those who have gone before and to those who still post each day and been so generous with their time. Excelsior.

@rashida I had PMR 5 years ago and was on tapering doses of Prednisone for a year. I never gained weight or had an increased appetite. The Prednisone gave me so much energy and eliminated my pain. Because of all the energy and because I was pain-free I was busy every day cleaning closets, painting the garage, exercising, etc. Doing all these things must have kept the weight off. My PMR has been gone, or at least in remission, since 2021. For me prednisone was a wonder drug.

@slh317 I was on prednisone for over nine months and felt well . I was pain-free, had energy and felt myself again. I've been off the prednisone for a month and after a week the stiffness returned in my hips and shoulders. Some days I feel physically ill and can't function for most of the day. I didn’t experience weight gain but I have a friend who gained quite a lot and has the moon face. How did you know you were ready to go off the prednisone. I don't like knowing what how I am going to feel from day to day. I'm ready to go back on prednisone. I'm 79 and just want to feel good.

@slh317 I was on prednisone for over nine months and felt well . I was pain-free, had energy and felt myself again. I've been off the prednisone for a month and after a week the stiffness returned in my hips and shoulders. Some days I feel physically ill and can't function for most of the day. I didn’t experience weight gain but I have a friend who gained quite a lot and has the moon face. How did you know you were ready to go off the prednisone. I don't like knowing what how I am going to feel from day to day. I'm ready to go back on prednisone. I'm 79 and just want to feel good.

@slh317 I was on prednisone for over nine months and felt well . I was pain-free, had energy and felt myself again. I've been off the prednisone for a month and after a week the stiffness returned in my hips and shoulders. Some days I feel physically ill and can't function for most of the day. I didn’t experience weight gain but I have a friend who gained quite a lot and has the moon face. How did you know you were ready to go off the prednisone. I don't like knowing what how I am going to feel from day to day. I'm ready to go back on prednisone. I'm 79 and just want to feel good.

@donnamf
We are all different in what works for us, but it doesn't sound like you were on prednisone long enough or your taper was too fast. When I received my PMR diagnosis my rheumatologist told me to expect to be on prednisone for 18 months. Two months later I was handed an SMM diagnosis so I was forced by circumstance to do a fast taper and start kevzara. I'm at 1mg prednisone now. I managed the fast taper by decreasing in smaller increments. When my first decrease of 5mg didn't go well, my rheumatologist agreed with me to halve the decrease over half the time, so I still dropped 5mg in the same time period. I followed this process all the way through.