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Day 4 of prednisone and happy! Stay at 15 or go up to 20?
Greetings! First post (yay!). Finally got a treatment plan exactly a year after first hearing of PMR (and lurking here). Delay caused by other health issues (see below). This week started on 15 mg prednisone with instructions to increase to 20 mg after 3/4 days if I didn't get relief.
I started feeling relief in about 3 hours, and after two days my cement shoulders were largely gone, my hips have loosened, and my fatigue has lessened. But it's confusing; like may of us, I have a slew of other muscle issues. Specifically:
Over the winter I had a flare up of a crushed nerve root issue; treatment was successful but it leaves my hip and leg muscles a mess, with slow (months-long) rehab. Also had a prolapsed biceps tendon last year that messed up my left shoulder (two problems that keep me from raising my arm, yay!). The amount of home PT I do is insane. And my sense is that the PMR made rehabbing these injuries extremely difficult, with limited results (though I am currently reaping the benefits).
So now, starting day four, I'm feeling all of the old injuries in a more pronounced way--as if, with most of the PMR pain removed, they've reared their heads to demand attention. I'm happy to provide that, of course, but it is just a bit hard to tell what the heck is what in my left shoulder, left hip, and left leg.
So it's hard to judge exactly how successful the 15 mg dose has been. I'm thinking at least around 60% better? Maybe 70%? It's great, whatever it is, but I can't quite decide if I should stick with 15 mg or go up to 20. I'm thinking, this is my chance, don't blow it. Any thoughts?
A bit more about my PMR. Pretty classic morning stiffness, shoulders lately unusable, fatigue. ESR topped out at 104; CRP at 32 mg/L in January; about half that now, for whatever reason--maybe doing Mediterranean diet and upping the antioxidents. I'm gonna be 73 next month. 🙂
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@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!
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2 Reactions@stonewheel Thank you <3
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1 ReactionUpdate: 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
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1 Reaction@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.
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