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

@stonewheel Which supplements, may I ask?

Certainly.
1. Omeprozale 20mg / day
(to protect stomach lining)
2. Vitamin D3 5,000 IU / day
3. Calcium Carbonate
600mg+D3 800IU combo / day
(to keep bones strong and
send the calcium to bones.
4. Vitamin B12 1,000mg / day
(DNA, red blood cells for
oxygen transportation, DNA,
nerve health because Pdzne
has caused tingling and a bit
of numbness in my finger
tips, mood and energy boost)
5. Apixaban (Eliquis) 5mg
twice / day (every 12 hours)
(Prednisone is used to stop
Internal bleeding, the large
starting dosage caused me to
have DVT a blood clot from
from groin to my ankle in my
right leg. Although it can’t be
proven, I know it was was
the Prednisone, especially
Combined with #6.
6. Valacyclovir (Valtrex)
500mg / day
(Prednisone immediately
caused me to have a huge
Herpes HSV-2 flair. But it
can also cause blood clotting,
see Apixaban (Eliquis) above.

Note: My Rheumatologist started me on 50,000 IU of Vitamin D3 once per week, but it exhausted me the next day (too much at once) so my PCP said buy OTC D3 5,000 IU / day, and it is much better. No ill effects and he just tested my D3 level and “It’s perfect, the middle of the range.” he said.

Prednisone stops the PMR pain fast and keeps it away. But, the side effects can be extreemly detrimental, even deadly. The blood clot might have killed me. Fortunately it hurt so badly that I went to the ER. They kept me for 5 days, 4 nights, to get my blood stable enough to leave on Eliquis twice daily. Last week, I was given the ok to stop Eliquis.
Then later in the week, I had a PMR flair. I went up from 1mg to 2mg of Prdzne per day and feel better today.
I have felt that GCA is toying with me, even though an ultrasound and temple biopsy both results reported negative for GCA. I’m believe in Positive Mental Attitude (PMA) and have tried to ignore the possible symptoms because the “go-to” treatment is high doses of Prednizone. Yuk!
So, I’m going day-to-day and hoping for the best. If I start losing vision, I’ll do what I have to do. So far, all of the GCA symptoms that I’m experiencing is occasional flashing lights, noticeable in the evening (in the dark,) and tender scalp which I was curious about and why I had the biopsy done. Another Prednisine side-effect?
Maybe. Could be a Valtrex side-effect though.

Back to the supplements though,
I would recommend 1-4 above for anybody with PMR, of course after consulting with their doctor.
I do take Kevzara, and I’m sure it helps, which my rheumatologist prescribes but my PCP of 25 years is my “Chief.” I make sure he knows everything and run everything by him first, and hero him up to date.
I wish you the very best!

@stonewheel Thank you <3

Update: End week 1 at 11.25. Up and down week--or rather, down and up. Troubling aches the first few days of the week, but the last 3 have been glorious. Stressy days correlate with more noticeable aches. Planning to sit on 11.25 for a few more weeks. I learned a ton this week.

Thoughts:

1. My taper log is priceless info.

2. I've been waking around 4 AM lately, and have been surprised to discover I'm in a lovely pain/ache-free zone. Shoulders like...normal...and happy. Hips not an issue. Then I doze/sleep, and by 6 AM the place on my upper arms labeled PMR starts to make its presence known. Not bad, but I get the message.

3. I think I finally got it sorted out in my head why I had those two painful days last month on the highest stress days of the summer: Need for cortisol to help out exceeded available cortisol/prednisone. I conclude that my adrenal glands are most likely effectively suppressed.

4. I sit on in my garden when I can these days, doing slow-motion arm PT. It's very peaceful, and I fancy I can feel my poor muscles relaxing and "breathing" in healing ways. NB: I used to describe my PMR, before I had heard of PMR, as "It's like a climbed a Rocky Mountain yesterday, and today I ache and just want to rest and recover. Except I never recover; it's like that every day." The bod really likes not feeling like that; I'm lucky to have to time to relax and let the accumulated muscle stress flow away. That's what it feels like, anyway.

5. No side effects so far. I've cleared a new supplement plan with all my docs, hoping to keep the worst at bay as I search for my lowest effective dose.

Excelsior

@p0rtia look into pool PT. Pool walking is great low impact. Forwards, backwards, sideways, leg crossovers. Hold the rail and raise your knee 15 and repeat with other leg. You get my drift. It’s been my savior.
Pool was my stress reliever, fresh air. Ask a friend to keep company.

Ok, so now they are reducing my pred from the 30 it was increased to, and then to 20mg. Just put it down to 17.5mg. After the first 24 hours I slept 20 hours on the second day of taper!! Extremely exhausted all the time. A very little bit of the PMR symptoms started back, too, but my doc said to keep on the 17.5mg although I will probably 'feel like crap' for at least 2-3 weeks! Anyone else have this type of medical advice? Why do I need to 'feel like crap'? FYI - I was prescribed Kevzara right at the beginning of my treatments, but the prescription is still 'lost' at the specialty pharmacy after 8 weeks... any ideas on how to get a specialty pharm to work!?

@slh317 just read this and very inspired by it. I’ve not even started the prednisone yet. I’m actually sitting here looking at the packet as I’ve been diagnosed with likely PMR after a month of horrible arm and shoulder and glutes pain. Rheumatologist had given me 20mg to take for 5 days and then he will likely confirm I have PMR. I sort of want to go have that diagnosis so I know what wrong with me but also very worried about taking the steroids. Very happy to hear that you had a good experience though and I’m praying for a similar outcome .. thanks again

@sbgigi I've been taking Actemra for 2 years, so I have a lot of experiencing dealing with specialty pharmacies. It's strange that they haven't processed your Kevzara prescription. Kevzara and Actemra are really expensive, so specialty pharmacies should be eager to help you. Could there be a problem with pre-approval with your insurance? What is the pharmacy telling you about the problem? Would it help if the doctor resubmitted the prescription?

Google says Kevzara is like Actemra in that it can take several months to build up to full strength in your body. So the sooner you start taking it the better.

@rashida Jumping in to say that obesity has been my life-long trial. I've been all sizes, repeatedly. So when undiagnosed PMR, along with other issues, knocked me flat, I put on weight. After diagnosis and once on prednisone, I have actually able to stay in weight-loss mode with ease. I'm down over 20 lb in 11 weeks. I know how to diet, and the absence of pain and increased focus did the trick. I am also on Mounjaro.

As I understand it, prednisone does not in itself cause weight gain--it increases appetite, which leads to weight gain. There are a couple of other factors, but apparently none of them involve directly increasing body-fat percentage.

I read with personal interest the accounts here of people gaining or losing weight. I am currently wondering if the people who have the hardest time with increased appetite are those who are not experienced in handling that issue?

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.