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alan bruce
@alanbruce

Posts: 18
Joined: Aug 11, 2017

Hello, I am new Mayo connect and new to PMR

Posted by @alanbruce, Sep 20, 2017

I am a 75 year old male and I was diagnosed w poly myalgia rheumatica (pmr) two months ago while I was at Rochester while my wife was being seen for her health issues at Mayo Clinic. My PMR came on quickly with the worst pain that i have ever experienced. I was very fortunate to be at Rochester and saw several great Mayo doctors in the emergency room at Saint Mary’s hospital and then in the Rhuematology Clinic. I started on Prednisone 20MG and now on 15MG following Mayo’s taper plan. My primary care doctor in my hometown has been seeing me until my appointment with a rheumatologist in October for followup care. Lots questions and concerns about the long term use of prednisone and it’s potential side effects.

REPLY

Hello Alan (@alanbruce) – Welcome to Mayo Connect. We are happy you found us. Connect is a great place to ask questions you have about your health concern and find out what other Connect members with similar health concerns are doing for treatments. I am 74 and also have PMR. My first occurrence of PMR came about in 2007 and just like you the pain was extreme and I needed a walker to get around. My rheumatologist at the Rochester Mayo Clinic put me on 20 mg of prednisone and within a few hours of taking the first pill I had relief and no longer needed the walker to get around. I was not able to taper off of prednisone until 2010. The last year I was going between 1 mg and 1/2 mg until I was finally able to stop taking it without some pain. The PMR went into remission for 6 years and I was started back on 20 mg of prednisone. I’m now at 5 mg but struggling a little. The main side affect I have had is weight gain the first time around and a little weight gain this time around but I’ve learned that I have to really change my lifestyle when it comes to eating.

I just got my prescription refilled for 2.5 mg pills and was reviewing the pharmacy side affects notes that came with it. I’ve read them before but it is a long list and kind of scary…sort of like listening to the TV commercials on Lyrica when they list every thing that it can do to you as fast as they can at the end of the commercial after showing you the friendly message up front. PMR is definitely not what any of us would choose. I do think the a better diet can help improve the overall health of people with PMR. Here’s a site that talks a little bit about diet and lifestyle for people with PMR:

http://www.pmrgca.co.uk/content/nutrition

I started looking into changing my eating lifestyle after reading a Dr. Terry Wahls story about how she was able to significantly reduce her MS symptoms through modifying her diet. You can find her story here: http://terrywahls.com/about/about-terry-wahls/. I tried gluten free, dairy free and limited red meat for awhile but now I’m just trying to keep the sugar intake at a minimum and increase the green veggies and fruit by having a green smoothie for breakfast 4 to 5 days a week. Normally it’s just a 1/4 blueberries, a couple of strawberries, cup of greens (spinach, kale, chard, etc.), with about 4 oz of coconut water and 4 to 6 oz of water blended with a few ice cubes. Didn’t like it much when I started but it’s gotten better.

Mayo Clinic has some good information on how to balance the risks of long term use of prednisone and similar drugs here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2

Hoping your PMR goes into remission ASAP.

John

Hi yes PMR does come on quickly & the pain is really bad & one does not know what is happening. Well I am 76 & mine came on suddenly in Feb 2017 I spent 3 weeks in pain not knowing what to do about it finally I went to the Dr. & yes it was PMR. He put me on 20mg of prednisone along with oxytocin for 1 day & that took care of the pain. I am now on a pred. maintenance of 5mg in the AM & 5 mg in the PM. I still have the PMR but it is under control. Seeing the Dr. Monday & will discuss on lowering the dose. Unfortunately this strange PMR will have to run it’s course 1 to 3 years. I have learned to live with it & on the right dose of the pred. it isn’t so bad. For me it is business as usual. Oh watch the humidity you will probably feel worst when it goes up I guess that will be your barometer working. Best of luck

Hello @alanbruce

I’d like to add my welcome, too.
I’d also like to introduce you to @lisabeans, @barbararene, @paulinef, @charlena, @rolandhp, @marylou705, @amkaloha, @charlena, @sallyann,@julied838, @madge, @jchatchett, who have written about their experiences with PMR and with prednisone, in these discussions:

– Skin infections https://connect.mayoclinic.org/discussion/skin-infections/
– Polymyalgia rheumatica https://connect.mayoclinic.org/discussion/poly-myalgia-rheumatica/
– Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-pmr-2-12-years-ago-steroids-didnt-help/

@alanbruce, what is your biggest concern about prednisone? Have you experienced any side effects?

@johnbishop

Hello Alan (@alanbruce) – Welcome to Mayo Connect. We are happy you found us. Connect is a great place to ask questions you have about your health concern and find out what other Connect members with similar health concerns are doing for treatments. I am 74 and also have PMR. My first occurrence of PMR came about in 2007 and just like you the pain was extreme and I needed a walker to get around. My rheumatologist at the Rochester Mayo Clinic put me on 20 mg of prednisone and within a few hours of taking the first pill I had relief and no longer needed the walker to get around. I was not able to taper off of prednisone until 2010. The last year I was going between 1 mg and 1/2 mg until I was finally able to stop taking it without some pain. The PMR went into remission for 6 years and I was started back on 20 mg of prednisone. I’m now at 5 mg but struggling a little. The main side affect I have had is weight gain the first time around and a little weight gain this time around but I’ve learned that I have to really change my lifestyle when it comes to eating.

I just got my prescription refilled for 2.5 mg pills and was reviewing the pharmacy side affects notes that came with it. I’ve read them before but it is a long list and kind of scary…sort of like listening to the TV commercials on Lyrica when they list every thing that it can do to you as fast as they can at the end of the commercial after showing you the friendly message up front. PMR is definitely not what any of us would choose. I do think the a better diet can help improve the overall health of people with PMR. Here’s a site that talks a little bit about diet and lifestyle for people with PMR:

http://www.pmrgca.co.uk/content/nutrition

I started looking into changing my eating lifestyle after reading a Dr. Terry Wahls story about how she was able to significantly reduce her MS symptoms through modifying her diet. You can find her story here: http://terrywahls.com/about/about-terry-wahls/. I tried gluten free, dairy free and limited red meat for awhile but now I’m just trying to keep the sugar intake at a minimum and increase the green veggies and fruit by having a green smoothie for breakfast 4 to 5 days a week. Normally it’s just a 1/4 blueberries, a couple of strawberries, cup of greens (spinach, kale, chard, etc.), with about 4 oz of coconut water and 4 to 6 oz of water blended with a few ice cubes. Didn’t like it much when I started but it’s gotten better.

Mayo Clinic has some good information on how to balance the risks of long term use of prednisone and similar drugs here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2

Hoping your PMR goes into remission ASAP.

John

Jump to this post

John,
Have you heard of PMR or Prednisone impacting a PSA test

@johnbishop

Hello Alan (@alanbruce) – Welcome to Mayo Connect. We are happy you found us. Connect is a great place to ask questions you have about your health concern and find out what other Connect members with similar health concerns are doing for treatments. I am 74 and also have PMR. My first occurrence of PMR came about in 2007 and just like you the pain was extreme and I needed a walker to get around. My rheumatologist at the Rochester Mayo Clinic put me on 20 mg of prednisone and within a few hours of taking the first pill I had relief and no longer needed the walker to get around. I was not able to taper off of prednisone until 2010. The last year I was going between 1 mg and 1/2 mg until I was finally able to stop taking it without some pain. The PMR went into remission for 6 years and I was started back on 20 mg of prednisone. I’m now at 5 mg but struggling a little. The main side affect I have had is weight gain the first time around and a little weight gain this time around but I’ve learned that I have to really change my lifestyle when it comes to eating.

I just got my prescription refilled for 2.5 mg pills and was reviewing the pharmacy side affects notes that came with it. I’ve read them before but it is a long list and kind of scary…sort of like listening to the TV commercials on Lyrica when they list every thing that it can do to you as fast as they can at the end of the commercial after showing you the friendly message up front. PMR is definitely not what any of us would choose. I do think the a better diet can help improve the overall health of people with PMR. Here’s a site that talks a little bit about diet and lifestyle for people with PMR:

http://www.pmrgca.co.uk/content/nutrition

I started looking into changing my eating lifestyle after reading a Dr. Terry Wahls story about how she was able to significantly reduce her MS symptoms through modifying her diet. You can find her story here: http://terrywahls.com/about/about-terry-wahls/. I tried gluten free, dairy free and limited red meat for awhile but now I’m just trying to keep the sugar intake at a minimum and increase the green veggies and fruit by having a green smoothie for breakfast 4 to 5 days a week. Normally it’s just a 1/4 blueberries, a couple of strawberries, cup of greens (spinach, kale, chard, etc.), with about 4 oz of coconut water and 4 to 6 oz of water blended with a few ice cubes. Didn’t like it much when I started but it’s gotten better.

Mayo Clinic has some good information on how to balance the risks of long term use of prednisone and similar drugs here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2

Hoping your PMR goes into remission ASAP.

John

Jump to this post

Hello @alanbruce, I have not heard of prednisone or PMR impacting a PSA test. I did do a quick search and found an article on the National Institutes of Health site that supports prednisone affecting the PSA. Here’s the link I found:
https://www.ncbi.nlm.nih.gov/pubmed/9697790

John

@johnbishop

Hello Alan (@alanbruce) – Welcome to Mayo Connect. We are happy you found us. Connect is a great place to ask questions you have about your health concern and find out what other Connect members with similar health concerns are doing for treatments. I am 74 and also have PMR. My first occurrence of PMR came about in 2007 and just like you the pain was extreme and I needed a walker to get around. My rheumatologist at the Rochester Mayo Clinic put me on 20 mg of prednisone and within a few hours of taking the first pill I had relief and no longer needed the walker to get around. I was not able to taper off of prednisone until 2010. The last year I was going between 1 mg and 1/2 mg until I was finally able to stop taking it without some pain. The PMR went into remission for 6 years and I was started back on 20 mg of prednisone. I’m now at 5 mg but struggling a little. The main side affect I have had is weight gain the first time around and a little weight gain this time around but I’ve learned that I have to really change my lifestyle when it comes to eating.

I just got my prescription refilled for 2.5 mg pills and was reviewing the pharmacy side affects notes that came with it. I’ve read them before but it is a long list and kind of scary…sort of like listening to the TV commercials on Lyrica when they list every thing that it can do to you as fast as they can at the end of the commercial after showing you the friendly message up front. PMR is definitely not what any of us would choose. I do think the a better diet can help improve the overall health of people with PMR. Here’s a site that talks a little bit about diet and lifestyle for people with PMR:

http://www.pmrgca.co.uk/content/nutrition

I started looking into changing my eating lifestyle after reading a Dr. Terry Wahls story about how she was able to significantly reduce her MS symptoms through modifying her diet. You can find her story here: http://terrywahls.com/about/about-terry-wahls/. I tried gluten free, dairy free and limited red meat for awhile but now I’m just trying to keep the sugar intake at a minimum and increase the green veggies and fruit by having a green smoothie for breakfast 4 to 5 days a week. Normally it’s just a 1/4 blueberries, a couple of strawberries, cup of greens (spinach, kale, chard, etc.), with about 4 oz of coconut water and 4 to 6 oz of water blended with a few ice cubes. Didn’t like it much when I started but it’s gotten better.

Mayo Clinic has some good information on how to balance the risks of long term use of prednisone and similar drugs here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2

Hoping your PMR goes into remission ASAP.

John

Jump to this post





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Morning everyone.
I got off of my prednisone for 1 week. I was on 1/2 mg before. Well it didn’t last. All the pmr pain came bk. I am now on 1 1/2 mg of prednisone. I am not pain free but can manage much better. Don’t know what I will try next.
This has been going on for 2 yrs. No remission for me yet, but I am hopeful. When my pain returned it was in my neck and shoulders, but most in the bottoms of my feet, making it hard to walk.
Hope everyone has a good day.
Barbararene’

@barbararene

Morning everyone.
I got off of my prednisone for 1 week. I was on 1/2 mg before. Well it didn’t last. All the pmr pain came bk. I am now on 1 1/2 mg of prednisone. I am not pain free but can manage much better. Don’t know what I will try next.
This has been going on for 2 yrs. No remission for me yet, but I am hopeful. When my pain returned it was in my neck and shoulders, but most in the bottoms of my feet, making it hard to walk.
Hope everyone has a good day.
Barbararene’

Jump to this post

Well don’t feel bad, now let me tell you what I tried. I had been on 10 mg of prednisone/day 5mg in the AM & 5mg in the PM. Monday I thought I would reduce it to 5mg a day this turned out to be stupid on my part the pain came back with a vengeance knees, shoulders, neck, wrist & fingers. Not a smart move on my part. Today I will be back on 10mg/day the pain is just to bad. So 1-1/2 that you are taking is not bad at all. Yes they say the PMR will go away by it self so I guess all we can do is grin & bare it & hope for the best.

Hello @barbararene,

The first time my PMR came out it took me 3 years to taper off of prednisone. The last year was going back and forth with 1 mg and then 1/2 mg. I’m sure it’s different for everyone but you just have to keep trying what works for you. When I was struggling the first time my rheumatologist told me a story of one of his patients took 1 mg for a year before he was able to get off of the prednisone. I’m trying to go down 1 mg a month but if the pain comes back when I reduce the dosage I see if I can stand it for a few days and if it goes away. If it doesn’t then I go back to the previous dosage. I try not to go any higher if possible.

John

It’s good to have all this feedback on prednisone reduction problems as I’m experiencing the same but like everyone else, can only stand the pain and stiffness for so long before going back to the previous dose. I’ve resigned myself to it being a very long time before I’m off it completely but could be a lot worse. At least I’ve found a solution to sleeplessness – two Tylenol when I wake up during the early hours and I have no “fogginess” the next morning.

Sandra

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