← Return to Successfully treated for Polymyalgia Rheumatica

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@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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Replies to "Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about..."

Thank you John. I’m currently researching the benefits of taking CoQ10 to help reduce the symptoms of PMR with the hope it will allow me to taper off Prednisone more quickly.

You have any thoughts either way?

Hi @mach92 – I think anything that helps reduce inflammation may help but that’s just my personal opinion. I was taking CoQ10 but haven’t taken it for awhile. I switched to a Turmeric supplement that has helped others in a neuropathy group that I belong to that also have inflammation related health problems. Here’s a link on Amazon that shows the product and ingredients – http://amzn.to/2qAEveq.
CoQ10 may help just as much. There is a lot of information out there on turmeric and it’s health related use.

There is a Mayo Connect discussion for Turmeric here – http://mayocl.in/2dHSGUS

John

Thank you John for the info and links!

You’re welcome! Please keep us up to date on your progress with tapering off of prednisone and your PMR. Hopefully it will go into remission soon. I had a Toastmaster friend that came down with it the same time that I did in 2007 and his went into remission within a year and still has not come back so there is hope.

UPDATE: Last week my rheumatologist increased my Prednisone from 10mg to 15mg…didn’t feel any difference. Yesterday I decided on my own to up it to 20mg as well as starting a daily routine of taking Turmeric/Curcumin 500mg twice a day, Ubiquinol CoQd10 and 100% Tart Montmorency Cherry concentrate from Traverse City, Michigan. BTW, I live in Michigan. They say they pressed 2,000 cherries into a 32 fl oz bottle!

Not sure what is working but I feel like a million bucks. Went from barely being able to get out of bed or off the couch two weeks ago, to thinking about going for a “lite” jog this afternoon. AMAZING! Again, not sure what’s working but I’m sticking with this “recipe”!!

BTW, talked to my rheumatologist this morning, told him MY plan and he said “ok, reduce to 15mg in two weeks and see how you do”. Not sure I’ll reduce that much, maybe down to 17.5mg and see how I do…….

That’s great news @mach92! I would keep trying to taper the dosage of prednisone if possible. 20 mg is considered a very low dosage from what I heard from my rheumatologist. I started with 20 mg on my first occurrence of polymyalgia rheumatica and was off in 3 years. The second occurance this past year I also started with 20 mg of prednisone but I’m now down to 5 mg and relatively no pain in my shoulders, arms and hands.

John

Glad to hear you’re doing well on 5mg. How long will you be on 5 and what’s your reduction schedule? This is the first day I’ve been pain free in a long time.

I’m on week 2 at 5 mg. I’m trying to go down by 1 mg every 2 weeks. My doctor suggested tapering down 1 mg per month but if there is no pain when I drop in 2 weeks then I keep at the reduced level for another 2 weeks. The first episode of polymyalgia rheumatica I went back and forth for three months between 1 mg and 1/2 mg of prednisone until I finally was able to stop taking it with no pain returning. I was doing that a week at time which may not have been enough time. I did discuss with my Mayo rheumatologist on different tapering off schedules.

My Mayo rheumatologist recommended the same reduction, 1mg per month. My local rheumatologist is a bit more aggressive…..think I’ll take the conservative approach and reduce no more than 2.5 every month. That was the schedule I started in 2015 and seemed to work well for me. That is until I had a relapse this past March.

BTW, thanks for the Turmeric recommendation!

Hi again on one of my reply’s to you John a couple of days ago I had said that my Dr. recommended 20mg of prednisone every other day. He also said that I could take half in the AM & the other half in the PM but still every other day. Now that seems to help especially taking half in the evening this way I am not to sore when I awake in the morning.

I have some 2.5 mg prednisone tablets left from a previous script so I may give your approach a try. Normally taking the 5 mg in the morning I feel OK during the day but start feeling a little stiffness/pain in the evening so this approach may help. Thanks for the information!

John

Well yes this is my approach to the matter okay in the afternoon but come evening & of course the next morning I hurt. So as I said I take 10mg in the AM & 10mg in the PM then skip a day as the Dr. told me to do. I am still not sure about skipping a day it may be okay & maybe not. Will let you know

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