Trouble going below 3mg

Posted by pmrsuzie @pmrsuzie, Jun 5 8:04am

I have been at 2.5mg for almost 2 weeks and started throwing in a 2mg day every third day but seemed to be having flare or withdrawal or adrenal insufficiency symptoms. So I went back to 3mg and seem ok.
I am going to try the tapering schedule in this article.
https://www.impendo.co.uk/prednisolone/prednisolone-withdrawal

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

@pmrsuzie

I am not totally symptom free at 3mg. I'm having a little shoulder and hip pain in the morning but seems to go away when I move around. I can find other things to blame for achiness- humidity, lots of rain the last month or so and I've been doing a lot of weeding. My hands are stiff but I have OA and cppd. I am resolved to the fact that I am not going to get a LOT better. I am so hoping to not go above this 3 mg.

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"I can find other things to blame for achiness- humidity, lots of rain the last month or so and I've been doing a lot of weeding. My hands are stiff but I have OA and cppd."
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I had a tendency to blame PMR for almost everything but that turned out to be false.

The solution was more Prednisone but that was the easy answer for everything. The hard thing was getting off Prednisone.

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@jeff97

Yes, some people who take Actemra have to keep talking prednisone. Actemra inhibits IL-6, but there are other substances that cause the inflammation from PMR and GCA, such as IL-17. The person's mix of the inflammatory substances determines if they have to keep taking prednisone.

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"Actemra inhibits IL-6, but there are other substances that cause the inflammation from PMR and GCA,"
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True ... but cytokines aren't separate and independent inflammation pathways. The cytokines are more like a network of things that talk to each other and influence each other. I can barely understand what IL-6 does when my rheumatologist goes on and on about "crosstalk" and "upstream and downstream regulation" of things. Cortisol might be the conductor of the orchestra that keeps everything in balance and maintains the harmony.

My rheumatologist says 1L-17 inhibition might be another option for me and has suggested Cosentyx. It might work for both PMR and spondyloarthritis.
https://www.drugs.com/cosentyx.html#:~:text=Cosentyx%20FDA%20approval%20was%20received,immune%20system%20to%20fight%20infections.
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I think IL-17 inhibition is being studied for PMR but medical research is painstakingly slow. There will be plenty of time to do painstakingly slow tapers off Prednisone.

Thank God they are actively seeking alternatives to Prednisone.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr#:~:text='Really%20Exciting'%20Data%20in%20IL,in%20both%20PMR%20and%20GCA.%E2%80%9D
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Janus kinase (JAK) inhibitors such as upadacitinib (Rinvoq) are also being evaluated for both PMR and GCA.

For now, I'm content to stay on Actemra.

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@megz

Yes, I've been following similar to what's called the "dead slow" taper since 7mg, the point just above where I had my one and only flare last year. If it's done consistently it's not really slow at all. The original taper schedule I was given said to drop 1mg (under 10mg) every 4 - 8 weeks and the incremental taper I'm doing achieves it in 7-8 weeks, within the recommended reduction schedule range (Australia). The taper schedule given in the link on the original post is almost identical.

I begin the .5mg reduction to 3mg in a few days. My worry about staying at 3mg for too long is that it doesn't challenge the adrenal glands to go back into production, as 3mg is the amount people who have non-functioning adrenals take indefinitely. I'll take the reductions under 3mg carefully, but I do want to encourage my adrenals to function again.

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I had some minor transient pain issues as I tapered below 5 at 0.5 per month, but I hung in there and the adrenals are apparently back in acceptable production. At zero now for 3 months with no problems except lingering fatigue. Good luck.

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@jeff97

Yes, some people who take Actemra have to keep talking prednisone. Actemra inhibits IL-6, but there are other substances that cause the inflammation from PMR and GCA, such as IL-17. The person's mix of the inflammatory substances determines if they have to keep taking prednisone.

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Thanks for your comment. Do t know whether I read this or it seems sensible but have wondered if PMR patients vary on the specific immune pathways that trigger the symptoms. Based on Kevzara response, IL-16 is certainly a major pathway for my PMR but presence of other autoimmune disorders suggests other pathways might take a supporting role. Appreciate your comments.

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Sitting at 3mg prednisone. Yes, I am feeling achy in the morning. Is this low grade pmr or normal old age wear and tear problems or the low cortisol tapering effect. Would a biologic to get below 3 mg get approved? I imagine I have more than 1 interleukin related issues.
Yes, my case is complicated. I was diagnosed with AMD a long time ago. Turns out it's not AMD, it's macular dystrophy. It's genetic in nature. It's worse in my left eye. I have also developed severe hearing loss in my left ear. Seems to me to he related. Then pmr comes along, then the cppd, then the vestibular migraines, then the Achilles tendonosis tendonitis. A lot of dots to connect if there is a mastermind out there to connect them. I've had other problems along the way like gallstones and a grapefruit size fibroid and thyroid nodules. Seems like more than the average person's list of complaints. I have just taken one problem at a time, curve balls being thrown at me. One day at a time, that's all you can do.
I am hoping to be able tapering below 3 mg somehow or maybe just be able to stay at 3mg.

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@pmrsuzie

Sitting at 3mg prednisone. Yes, I am feeling achy in the morning. Is this low grade pmr or normal old age wear and tear problems or the low cortisol tapering effect. Would a biologic to get below 3 mg get approved? I imagine I have more than 1 interleukin related issues.
Yes, my case is complicated. I was diagnosed with AMD a long time ago. Turns out it's not AMD, it's macular dystrophy. It's genetic in nature. It's worse in my left eye. I have also developed severe hearing loss in my left ear. Seems to me to he related. Then pmr comes along, then the cppd, then the vestibular migraines, then the Achilles tendonosis tendonitis. A lot of dots to connect if there is a mastermind out there to connect them. I've had other problems along the way like gallstones and a grapefruit size fibroid and thyroid nodules. Seems like more than the average person's list of complaints. I have just taken one problem at a time, curve balls being thrown at me. One day at a time, that's all you can do.
I am hoping to be able tapering below 3 mg somehow or maybe just be able to stay at 3mg.

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It sounds like you need to stabilise at 3mg for a while, as per your doctor's advice. I hope your aches resolve quickly.

I understand your frustration with a series of ailments appearing. Me too. When you asked whether the things might be related or of they are just part of aging, I flashed back 50yrs to when my grandfather, then around 70, had a series of ailments over a few years. My father and his siblings watched on as each new problem needed another medication or hospitalisation. I recall my father asking my grandfather, "Are you sick, or just old?" Fifty years later, it's the same question we're asking ourselves, and like my father did with his father, our children are probably wondering too. There is nothing new under the sun.

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It took me months to get off the last few milligram, I just kept nibbling away at the dose finally got there. You will know when your inflammation markers are back to normal range and you are left with whatever residual pain you carry around.

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