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

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.

@p0rtia
Rock and roll with it. It sounds like you are getting to know your PMR. And, it’s different from everybody else’s but we share a few traits with some and a few other traits with others and all together we get to know our own PMR.
We are our own human guinea pigs, sadly, as research and technology has lagged behind, like Parkinson’s was 30 years ago, and still may be.

Quartering 5’s to be efficient. I can relate. Been there, done that….heck, may have to do it again (sheesh, I really hope not.)

Long? Breezed right through it. You are a good writer and express your experiences so well. Are you an author? It is our shared experiences on this Mayo site that helped me get to where I am today. Without it, I’d be a basket case, surely. I write long replies and thankfully nobody has told me to stop.

Oh yeah, I can also relate to the high from fasting. I weighed too much (15 years ago) and decided to cut out breakfast, and lunch if I felt like it. Why add fuel in the morning when I just topped off the tank last night? I’d drive to work feeling really stoked. I easily lost 60 pounds and never gained it back. I do eat breakfast again and I’m getting into the habit of lunch also, (pills to take, and I do think it is a healthier lifestyle) but I do eat supper earlier and if I snack before bed it is zero calorie food and omega-3. That won’t lose weight, but I’m more focused on the PMR elephant in the room.

Keep informing.