How long has PMR lasted - I'm trying to find the average

Posted by shannaam @shannaam, Apr 16, 2022

I've had PMR for just over a year now and I'm trying to reduce the Prednisone as I hate taking pharmaceuticals. Just wondering how long I'm going to have to put up with it! My doctor has said very little as they don't seem to know why people get only to take Prednisone to ease the pain. Also that it can last between 1 & 5 years! Just trying to find out from people who have it or had it - to get an average.

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

Today of all days this was the best response I could have read. For the past couple of months I have had strange pain around, but not from, joints that didn't seem like PMR. I think this might be a clue as to why. Oh goody some more foods I have to be careful of. But, as I am determined to kick PMR and all of it's hanger ons in the butt, I will do my best. Thank you so much.

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@megz

We're all doing our best to maintain good health. Have you investigated oxalates which can cause an arthritic reaction in some people? Before my PMR diagnosis I realised my new "healthy" diet was extremely high in oxalates from the "superfoods" I was eating.

Very high in oxalates are baby spinach & swiss chard, beetroot, almonds, turmeric, cocoa, most nuts, whole grains, hydrolysed collagen, etc. These were all things I was eating in fairly large amounts before getting PMR. Oxalates bind to calcium which reduces its absorption and can cause kidney stones in some people. They can also cause calcium-oxalate crystals in joints and the tissue surrounding them, causing an inflammatory response.

If you haven't investigated oxalates & lectins (anti-nutrients) and the foods that are highest in them, it may be worth a look.

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(I screwed this post up so I hope it sticks this time)

Today of all days this was the best response I could have read. For the past couple of months I have had strange pain around, but not from, joints that didn't seem like PMR. I think this might be a clue as to why. Oh goody some more foods I have to be careful of. But, as I am determined to kick PMR and all of it's hanger ons in the butt, I will do my best. Thank you so much.

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@tjmjsjwj

That is incredible! Did you change your diet over the course of the 9 months?

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@tjmjsjwj. I might have answered your question re diet without using your ‘handle’ 🙄

I eat a healthy diet and exercise regularly so I didn’t have to alter that part of my life.

You might have read another comment I posted that stated ‘my doctor punched PMR in the mouth with a 60 mg dosage for 4 days; then 40 mg for 4 days; 30 mg for 4 days; then 20 mg for 10 days and I started tapering from there.’ I think the strong initial dosages contributed to a smooth taper for me.
Just my thoughts.

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@hunib33

@tjmjsjwj. I might have answered your question re diet without using your ‘handle’ 🙄

I eat a healthy diet and exercise regularly so I didn’t have to alter that part of my life.

You might have read another comment I posted that stated ‘my doctor punched PMR in the mouth with a 60 mg dosage for 4 days; then 40 mg for 4 days; 30 mg for 4 days; then 20 mg for 10 days and I started tapering from there.’ I think the strong initial dosages contributed to a smooth taper for me.
Just my thoughts.

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My ophthalmologist said something similar when he prescribed a 100 mg dose of prednisone for uveitis. He said he wanted to go for the "knock-out" punch because the lower doses weren't working. I tapered off prednisone quickly after the knock-out punch. I was happy the 100 mg worked. My ophthalmologist thought I was "too happy" about the potential for vision loss and wanted me to decrease my dose as quickly as possible. He said I was skilled with prednisone tapers because I tapered off prednisone in a month.

I wasn't so skilled after PMR was diagnosed. It took me more than 12 years to taper off prednisone when I took it for PMR.

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@dadcue

My ophthalmologist said something similar when he prescribed a 100 mg dose of prednisone for uveitis. He said he wanted to go for the "knock-out" punch because the lower doses weren't working. I tapered off prednisone quickly after the knock-out punch. I was happy the 100 mg worked. My ophthalmologist thought I was "too happy" about the potential for vision loss and wanted me to decrease my dose as quickly as possible. He said I was skilled with prednisone tapers because I tapered off prednisone in a month.

I wasn't so skilled after PMR was diagnosed. It took me more than 12 years to taper off prednisone when I took it for PMR.

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@dadcue. Our doctors took similar approaches. I think the strong dosage at the beginning was crucial to a better outcome with PMR in my case. Your taper with PMR was challenging—hopefully you’ve finally conquered it!

Be in Good Health

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@hunib33

I eat a healthy diet and exercise regularly, so I didn’t have to change that aspect of my life.

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Thank you so much for your comments. I will follow-up on this.

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@hunib33

@dadcue. Our doctors took similar approaches. I think the strong dosage at the beginning was crucial to a better outcome with PMR in my case. Your taper with PMR was challenging—hopefully you’ve finally conquered it!

Be in Good Health

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Yes ... I'm off prednisone and PMR is in remission according to my rheumatologist's notes.

Now PMR is being treated with a biologic. After the biologic was started. PMR was knocked out in about a year. That's how long it took me to taper off prednisone.

Something else popped up after I tapered off prednisone but PMR stayed in remission. A different autoimmune problem popped up and we were playing whack-a-mole for another year.

The past 2 years have been relatively quiet. Not too many moles to whack!

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@barracudacool

Starting year two. Thought I was closing in on remission. But flared at 8mg prednisone and the pain has returned. I’m basically starting over with a new medication.

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oh I completely understand.... year 2 1/2 down to 3 mg...had relapse.. Doc put me back on 15.. it's been 3 days and i'm a little better... Compression around head and back of head... temple pain somewhat subsiding. Dr suggests the only other treatment is Actemra Infusion... Would give it a try if the drug info wasn't so frightening. any thoughts?

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i've been on pred about 2 1/2 yrs. Was down to 3mg and then had horrible relapse. my doc recommends Actemra Infusion which has good reviews for removing pred dosing. But.... the info on the Infusion is not very inviting.. undecided... your thoughts/??

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I am hopefully going on Kevzara starting this week. It actually targets the IL-6 anti inflammatory cytokine required for controlling local or systemic acute inflammatory responses. And yes I had to look it up. Originally approved for RA and as of July 2023 for PMR. I am hoping this will help me taper successfully off of prednisone. I was down to 7mg and BAM. Now taking 30mg to control the pain. Sighs. Back to 4am mania and 2pm homicidal tendencies for the time being which is what pred does to me in higher doses.

But yikes stress causes problems for me.

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