Advice/experience about going back on Prednisone

Posted by bitsygirl @bitsygirl, Jan 22 2:50pm

I was diagnosed with PMR in December 2022. I did a short course of prednisone (3 weeks?) if I recall correctly and it helped, but it did not go away. I was referred to a rheumatologist but couldn't get an appointment until Sep. 2023. It got slowly better over that time. Rheumatologist put me on a short course again (10mg for a couple of weeks) and started working at another facility. Today (four months later) the new rheumatologist wants to put me on an extended regimen of 3 weeks each of 10mg, 9mg, 8mg, .... down to 1mg I guess. The pain now is completely livable. I have to be careful putting a shirt or jacket on and turning over in bed at night. Riding a bike requires periodic breaks, but I can ride and lift weights as I like more or less. I have been thinking it might be getting slightly worse and my ESR has gone up by a couple of points between meeting with the rheumatologists. But again, annoying but completely livable.

To finally get to the point, I am wondering if its a good idea to go on the predisone. I've read about people who can't get off it, and I'm wondering whether taking another round might create some kind of dynamic that makes it hard to get off later on. Is this crazy? Can it possibly make the PMR worse when I don't take predisone?

I asked my rheumatologist and she said no. I'd just feel better to hear the experience of anyone out there who has gone through something similar. I'm finding the decision difficult.

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

@prestol

Thanks @seniormed. About melatonin. I have tried it before (3-4 mg) without success. My problem isn’t getting to sleep, it’s staying asleep past 3 am. Maybe I’m not using it correctly. Appreciate any specific suggestions.

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Every bottle of melatonin I ever purchased had a warning not to use if you have an autoimmune disorder. PMR and GCA are autoimmune disorders. When I shared this with my Rheumatologist, he was surprised.
I just Googled this topic again, and what I found was complex and confusing.
On 40 mg of prednisone to treat GCA, I'd startle awake after two hours of sleep. I chose not to take melatonin. I got out of bed, read a book and drank lemon balm or valerian tea. After a couple of hours, I went back to bed and slept for a couple of hours.
I just read that lemon balm can interact with a thyroid medications and sedatives so use with caution.
As I tapered prednisone down to 10 mg and under, sleeping became easier.
I hope this helps.

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@tsc

Every bottle of melatonin I ever purchased had a warning not to use if you have an autoimmune disorder. PMR and GCA are autoimmune disorders. When I shared this with my Rheumatologist, he was surprised.
I just Googled this topic again, and what I found was complex and confusing.
On 40 mg of prednisone to treat GCA, I'd startle awake after two hours of sleep. I chose not to take melatonin. I got out of bed, read a book and drank lemon balm or valerian tea. After a couple of hours, I went back to bed and slept for a couple of hours.
I just read that lemon balm can interact with a thyroid medications and sedatives so use with caution.
As I tapered prednisone down to 10 mg and under, sleeping became easier.
I hope this helps.

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Melatonin is a hormone that affects a lot of different body functions, including strengthening the immune system. We're trying to suppress our overactive immune response with PMA.

The Mount Sinai website points out the benefits of Melatonin, but says:
"Steroids and immunosuppressant medications: Melatonin may cause these medication to lose their effectiveness. DO NOT take melatonin with corticosteroids or other medications used to suppress the immune system."
https://www.mountsinai.org/health-library/supplement/melatonin
In Australia, melatonin is available only on prescription in 2mg tabs. There is an exception for over 55yo who may buy one month supply from a chemist after discussing their other meds and needs. If you're on steroids you're directed to ask your doctor before taking melatonin. I'm surprised how freely available it is in some countries.

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@megz

Melatonin is a hormone that affects a lot of different body functions, including strengthening the immune system. We're trying to suppress our overactive immune response with PMA.

The Mount Sinai website points out the benefits of Melatonin, but says:
"Steroids and immunosuppressant medications: Melatonin may cause these medication to lose their effectiveness. DO NOT take melatonin with corticosteroids or other medications used to suppress the immune system."
https://www.mountsinai.org/health-library/supplement/melatonin
In Australia, melatonin is available only on prescription in 2mg tabs. There is an exception for over 55yo who may buy one month supply from a chemist after discussing their other meds and needs. If you're on steroids you're directed to ask your doctor before taking melatonin. I'm surprised how freely available it is in some countries.

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I used it before PMR without results. Recently, I heard it may stimulate bone growth (in a very small dose).

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@tsc

I used it before PMR without results. Recently, I heard it may stimulate bone growth (in a very small dose).

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Yes, I'm happy to take the 1mg of melatonin prescribed to replace the melatonin stolen by the beta blocker. In amounts normally produced by the body (under 1mg) it's important for so many positive body functions.

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@johnbishop

I get a new PCP every 2 or 3 years at my local Mayo Family Clinic but my rheumatologist at Mayo Rochester was Dr Thomas Osborne - https://www.mayoclinic.org/biographies/osborn-thomas-g-m-d/bio-20054469#!

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Thanks!

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@bitsygirl

@dadcue Thanks for your reply. I was not aware that prednisone suppresses adrenal function. I have been reading more about side effects. It's a long boring story, but I tested at prediabetic on an oral glucose tolerance test a few months ago. Lining up that OGTT with the timing of the previous interval of prednisone at 10mg, I am suspicious, given all the information on steroid-induced diabetes, that it is was due to the prednisone. My blood sugar is much closer to normal now. So I have flip-flopped and decided the long course of prednisone is not worth the risk. Your point about adrenal function convinces me even more that its the right decision for me. I will wait until the pain becomes debilitating again before I take the risk. I'd love to be pain free, but I can completely live with the level of pain I have now. I am just counting my lucky stars that I feel like I have a choice.

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Perhaps Actemra or Kevzara would be helpful for you? I am scheduled to talk to my rheumatologist about the possibility of using one of them this Monday coming to supplement (and eventually help me lower) my prednisone use (only been on prednisone for 17 days).

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@rocjr1

Perhaps Actemra or Kevzara would be helpful for you? I am scheduled to talk to my rheumatologist about the possibility of using one of them this Monday coming to supplement (and eventually help me lower) my prednisone use (only been on prednisone for 17 days).

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I came off prednisone 4 weeks ago and so far no flare. The difference is that I have 7 injections of Kevzara in my body and it is now carrying the load. I hope never to deal with prednisone for PMR ever again.

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I was diagnosed with PMR about 4 years ago. Weaned off Pred last December, even though my shoulders were in pain (like you say, manageable). Met with Ortho doc who gave me an injection of cortisone in my right shoulder, which helped. Did PT for a few weeks but the pain is now getting worse and seems to be in my elbows as well. Met with my PCP yesterday and my c-reactive is back up to 21. Dammit. So the question is - is Pred the only recourse I have to get back on the pain mgmt wagon? If so, what dose should I restart on? Hard not to cry some days.

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@ksidorov

I was diagnosed with PMR about 4 years ago. Weaned off Pred last December, even though my shoulders were in pain (like you say, manageable). Met with Ortho doc who gave me an injection of cortisone in my right shoulder, which helped. Did PT for a few weeks but the pain is now getting worse and seems to be in my elbows as well. Met with my PCP yesterday and my c-reactive is back up to 21. Dammit. So the question is - is Pred the only recourse I have to get back on the pain mgmt wagon? If so, what dose should I restart on? Hard not to cry some days.

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See post by @wilmingtonemperor immediately above your post. Maybe he will give you more details about Kevzara.

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Hi @bitsygirl, I don’t think I would start using steroids if you can manage without them. I was diagnosed with PMR in March 2022 and have had a difficult time reducing my dose which had been stalled at 12 mg. I currently have pain that last all day and hip pain makes it difficult to walk. I was prescribed Kevzara to help me speed the reduction process along but I had some complications with that, and had to stop treatment. I am hoping to try Actemera as soon as I can see my new rheumatologist in April. My old one moved and no longer takes my insurance. 😟. I think if your body can recover without steroids that is pretty incredible. I hope that is helpful to you and good luck with your PMR journey.

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