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

Posted by p0rtia @p0rtia, Jun 13 8:15am

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. 🙂

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for jeff97 @jeff97

@cathie1 It sounds like you might be one of the people that Actemra doesn't work for completely. Actemra blocks inflammation from IL-6, which is one of the main sources of inflammation. But there are also other sources of inflammation, and if you have more of those contributing to your GCA, Actemra will not be completely effective. You might need to keep taking some prednisone until the GCA runs its course, but the Actemra should allow you to take a lower dose.

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@jeff97 Jeff,I looked over the copies of my lab report’s going back to Dec 2022 and I don’t have a copy of the results of an IL-6 being done.I was diagnosed in Nov 2022 with Polymyalgia Rheumatica .The CRP was63 and I was started on Prednisone and referred to a Rheumatologist.I started Actemra infusions in February 2023 and tapered off the Prdnisone.I don’t think I had any issues in 2024 or 2025.This episode started in April of this year,definitely GCA and I was started on Prednisone, Now reduced to15 MGMs a day,plus six infusions of Actemra.I am still symptomatic but somewhat improved.Had to increase the Prednisone today to 30 MGMs because of increased sensitivity right and left temporal areas .Advised to return to 15 MGMS tomorrow.I will see how the symptoms are tomorrow.I am most anxious to get off the Prednisone.I am a textbook picture of GCA and scheduled for my seventh infusion of Actemra in twelve days.I will ask if there is another medication that can be added so the Prednisone can soon be discontinued.Then perhaps the combination of a oral anti inflammatory and the Actemra will be effective.The temporal arteries were definitely sensitive yesterday so I will stay on the Prednisone as advised if needed.
I am so thankful for your advice and guidance.Cathie

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Profile picture for cathie1 @cathie1

@jeff97 Jeff,I looked over the copies of my lab report’s going back to Dec 2022 and I don’t have a copy of the results of an IL-6 being done.I was diagnosed in Nov 2022 with Polymyalgia Rheumatica .The CRP was63 and I was started on Prednisone and referred to a Rheumatologist.I started Actemra infusions in February 2023 and tapered off the Prdnisone.I don’t think I had any issues in 2024 or 2025.This episode started in April of this year,definitely GCA and I was started on Prednisone, Now reduced to15 MGMs a day,plus six infusions of Actemra.I am still symptomatic but somewhat improved.Had to increase the Prednisone today to 30 MGMs because of increased sensitivity right and left temporal areas .Advised to return to 15 MGMS tomorrow.I will see how the symptoms are tomorrow.I am most anxious to get off the Prednisone.I am a textbook picture of GCA and scheduled for my seventh infusion of Actemra in twelve days.I will ask if there is another medication that can be added so the Prednisone can soon be discontinued.Then perhaps the combination of a oral anti inflammatory and the Actemra will be effective.The temporal arteries were definitely sensitive yesterday so I will stay on the Prednisone as advised if needed.
I am so thankful for your advice and guidance.Cathie

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@cathie1 I haven't had an IL-6 test either. Google says that it is usually only tested in research situations.

A CRP of 63 sounds high to me, but Google says it is in the middle of the range for people with active GCA. Mine was only 9 when I was diagnosed, but my ESR was 58.

I hope you find a treatment plan that controls the GCA and allows you to taper off of prednisone, or at least lets you get to a low dose. I felt much better at 20 mg and below as compared to the higher doses in the range of 40 - 60, but being off of it completely is the best.

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