1. < Polymyalgia Rheumatica (PMR)

Tapering off of Prednisone

Posted by e @epvb, Mar 27, 2017

I am currently on 20 mg prednisone after tapering down from 40 mg which I was on for 2 weeks. I have been directed to taper down again next week to 10 mg. I am experiencing terrible headaches lasting days at a time as well as neck pain and insomnia. Has anyone found any relief or remedies for headache/neck pain? Thank you.

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zoe10 | @zoe10 | Jun 25, 2022
In reply to @johnbishop "Welcome @zoe10, I started both of my occurrences of PMR at 20 mg prednisone and you..." + (show)
@johnbishop

Welcome @zoe10, I started both of my occurrences of PMR at 20 mg prednisone and you are right the tapering between the higher dose and 10 mg was fairly easy and it got tougher and slower between 10 and 0. My first time with PMR it took the last 6 months of 3 and half years to go from 1 mg to 0. I went from 1 to 1/2 back to 1 back to 1/2, etc. until I was finally able to stop taking prednisone with little to no pain. I think the difficult part is that each of us are different which is why my rheumatologist told me to listen to my body when tapering down.

My rheumy suggested that I keep a daily pain and dosage log which really helped me while tapering. Do you keep a daily pain/symptoms log along with the dosage you took that day?

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Hi John, and thanks for welcoming me to the group. A pain log is an excellent idea - I will definitely start one!

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marda | @marda | Jun 25, 2022
In reply to @biblern "I’ve been on Prednisone for at least ten years for PMR. I’ve spent most of the..." + (show)
@biblern

I’ve been on Prednisone for at least ten years for PMR. I’ve spent most of the last 3-4 years on 3 mg/day. When I’ve gone below 3, my symptoms come back with a vengeance, & I go back to 5 & slowly taper back to 3. I’m 86-years old & expect to be on Prednisone for the rest of my life. All my health checkups, blood tests, etc. are within normal range. My most annoying symptom of long term Prenisone use is very thin skin, easy bruising, & what seems to be permanent discoloration in my lower legs. Otherwise, I feel fine & live an active life (for an 86-year-old, I guess 😊.)

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I just wish there was something we could do about the bruising and thinning skin.

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1 reply
suetex | @suetex | Jun 25, 2022

Thank you so much for your feed back. For the bruising, it was especially bad (and the skin tears) on my arms. So I cut the feet out of some knee high support hose I wasn't using and use them for arm covers. You can get them in colors and fun patterns and make a "fashion statement" as well as protect your arms.

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sharb | @sharb | Jun 27, 2022
In reply to @marda "I just wish there was something we could do about the bruising and thinning skin." + (show)
@marda

I just wish there was something we could do about the bruising and thinning skin.

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Me too! I use Arnicare (arnica roll-on gel) that resolves bruising and seems to help with healing, in general, in about 5-7 days. I am back in my garden after a late winter introduction to PMR; thus, the bruised, scraped, and jabbed arms! My ankles, too, swell somewhat, and I have permanent discoloration above my ankles.

I am at 15 mg, tapering to 12.5 mg later this week. I then will go down to 10 mg. Then, I will taper 1 mg at a time over a long period. I appreciate hearing about everyone's experience. I am now pretty clear on what to expect and, hopefully, will be able to take the process in stride!

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biblern | @biblern | Jun 27, 2022
In reply to @johnbishop "Hi Nancy, I struggled with the compression socks myself and found out that I can order..." + (show)
@johnbishop

Hi Nancy, I struggled with the compression socks myself and found out that I can order ones with zippers on the side through Amazon and it has made a big difference for me...threw all my old ones away. Now I no longer struggle to put the compression socks on.

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Thanks! I’ve ordered some (from the dreaded “you-know-where”!😊)

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flymetothemoon | @flymetothemoon | Jul 31, 2022

It sounds like you tapered too quickly. Tapering off Prednisone is a very slow process. I am doing it for the second time and it is months to finally get down to 2 mg. My husband has a lot of patients with this condition since it can effect the eyes if it is not treated properly.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 31, 2022
In reply to @flymetothemoon "It sounds like you tapered too quickly. Tapering off Prednisone is a very slow process. I..." + (show)
@flymetothemoon

It sounds like you tapered too quickly. Tapering off Prednisone is a very slow process. I am doing it for the second time and it is months to finally get down to 2 mg. My husband has a lot of patients with this condition since it can effect the eyes if it is not treated properly.

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Hello @flymetothemoon, Welcome to Connect. I saw in your first post that you have been dealing with PMR for more than 3 years. I agree, tapering off of prednisone is a slow process and everyone is different. Much like you, it took me 3 and half years to taper off of prednisone with the last 6 months going back and forth between 1 mg and 1/2 mg until I could finally stop taking it with little to no pain in the morning when I woke up.

I was diagnosed by a rheumatolgist but my primary care doc was always asking me if I had any scalp pain, pain in the temple area or vision problems for the reason you mentioned worrying that it might be Giant Cell Arteritis.

Do you keep track of your pain and dosage in a daily log?

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1 reply
flymetothemoon | @flymetothemoon | Jul 31, 2022
In reply to @johnbishop "Hello @flymetothemoon, Welcome to Connect. I saw in your first post that you have been dealing..." + (show)
@johnbishop

Hello @flymetothemoon, Welcome to Connect. I saw in your first post that you have been dealing with PMR for more than 3 years. I agree, tapering off of prednisone is a slow process and everyone is different. Much like you, it took me 3 and half years to taper off of prednisone with the last 6 months going back and forth between 1 mg and 1/2 mg until I could finally stop taking it with little to no pain in the morning when I woke up.

I was diagnosed by a rheumatolgist but my primary care doc was always asking me if I had any scalp pain, pain in the temple area or vision problems for the reason you mentioned worrying that it might be Giant Cell Arteritis.

Do you keep track of your pain and dosage in a daily log?

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Hi. I only keep track in my head, since I see my Rheumatologist every 6 weeks. My husband is an Ophthalmologist, and has a lot of patients with this condition. There is no pattern to my pain and dosage is regulated. This is the second time I am tapering off. When I was first having the pain in the beginning it didn't show up in my blood tests, but when it finally did, my CRP and Sed rate were extremely high. Scary, and my husband got involved before I saw the Rheumatologist. I've never had scalp pain. In beginning it was hips and shoulders. Now its my shoulders and hands (which happens in rare cases). My Rheumatologist emphasizes that we treat the condition and not symptoms, as long as the pain is bearable. I just want to be off these steroids since they damage the bones and raise the blood sugars. Not fun.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 31, 2022
In reply to @flymetothemoon "Hi. I only keep track in my head, since I see my Rheumatologist every 6 weeks...." + (show)
@flymetothemoon

Hi. I only keep track in my head, since I see my Rheumatologist every 6 weeks. My husband is an Ophthalmologist, and has a lot of patients with this condition. There is no pattern to my pain and dosage is regulated. This is the second time I am tapering off. When I was first having the pain in the beginning it didn't show up in my blood tests, but when it finally did, my CRP and Sed rate were extremely high. Scary, and my husband got involved before I saw the Rheumatologist. I've never had scalp pain. In beginning it was hips and shoulders. Now its my shoulders and hands (which happens in rare cases). My Rheumatologist emphasizes that we treat the condition and not symptoms, as long as the pain is bearable. I just want to be off these steroids since they damage the bones and raise the blood sugars. Not fun.

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My second time around with PMR I started eating better and exercising a little more which I think helped me taper off sooner that the first time with PMR. Here's some information that might be helpful:
— Can Diet Affect Symptoms of Polymyalgia Rheumatica?:
https://www.healthline.com/health/polymyalgia-rheumatica-diet

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1 reply
flymetothemoon | @flymetothemoon | Jul 31, 2022
In reply to @johnbishop "My second time around with PMR I started eating better and exercising a little more which..." + (show)
@johnbishop

My second time around with PMR I started eating better and exercising a little more which I think helped me taper off sooner that the first time with PMR. Here's some information that might be helpful:
— Can Diet Affect Symptoms of Polymyalgia Rheumatica?:
https://www.healthline.com/health/polymyalgia-rheumatica-diet

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Thanks for the link. I don't eat meat or poultry for many years now, and I walk about 20 miles a week, but didn't really help I guess. Just helps keep weight down and control my type 2 Diabetes. Exhausting.

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