How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

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

@dreamer38

Hello again, John…I’ve had PMR now for 1.5 yrs and am still on Prednisone…down to 4 mgms …went down too quickly and PMR returned. Could you please tell me if PMR is a compromised autoimmune disease. Now that the new COVID-19 VIRUS has arrived, do you know if people who have this are being told to stay at home? Especially if they are over 70, which I am! Once again, I thank you for any advice you can give me.

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I was on Pred for two years, dosage up and down several times. I kept trying to lower it but pain was too severe. Last year I ended up in the E.R. with bowel problems. I came out of it with a colostomy followed by several unexpected complications which led to more gastric/bowel surgery. Long/Short I was in hospital for 5 Months. Wounds would not heal and in that 5 months I saw many, many doctors. The one thing they all agreed on was that I must get OFF the Pred. at once. It had suppressed my immune system to the point where the wounds couldn't heal and were the cause of several different infections. I am home now and take zero Pred. Yes, I have a lot of pain but from what I learned the damage that it does to us makes it dangerous for seniors (I am 85) re the COVID problem and any other medical problems that might occur. I hope this first hand account will be of some help to you.

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@bcstew

I was on Pred for two years, dosage up and down several times. I kept trying to lower it but pain was too severe. Last year I ended up in the E.R. with bowel problems. I came out of it with a colostomy followed by several unexpected complications which led to more gastric/bowel surgery. Long/Short I was in hospital for 5 Months. Wounds would not heal and in that 5 months I saw many, many doctors. The one thing they all agreed on was that I must get OFF the Pred. at once. It had suppressed my immune system to the point where the wounds couldn't heal and were the cause of several different infections. I am home now and take zero Pred. Yes, I have a lot of pain but from what I learned the damage that it does to us makes it dangerous for seniors (I am 85) re the COVID problem and any other medical problems that might occur. I hope this first hand account will be of some help to you.

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Sorry to hear about all the difficulties you have had bcstew. It certainly will be of help to others to realise what prednisone can do without a person realising and not get complacent and encourage us to put up with a bit more in attempt to wean off it. Thanks for the reminder.

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Not sure how this works, but I have posted similar info before. Also, please forgive me for such a lengthy post, but I longed with all my being to find out what was happening to me and thought this may help some .
My Name is Matt, At 65 I was going through a situation with that caused a lot of stress. I have a back issue with my 4th vertebrae shifted forward and have dealt with back issues about 5-6 times over my life. I was having issues with my back again of course I thought the vertebrae's and the nerves contributed to this problem. I am also a very healthy Male and do yoga,Weight lift and lots of walking or biking. While i was going through the stress and back issues,I woke up one morning and shared with my wife I could barely get out of bed. Not sure what was going on ,I proceeded for several months with Chiropractors, acupuncture, Icing, over the counter pain pills ……….It was the most painful experience I have ever felt and over this time it had progressed from my hips, to my shoulders, sits bones, not my wrists. It felt like a nail was driven into each of those areas. Finally after months I went to a DR. that had helped me with my back 2 times previously. Really he did nothing before, except to say rest and take pain pills and always mentioned the back condition I had. This time he suggested a cortisone shot, which I had and it lasted about a week.Of course after a follow up visit, and all the pain had returned he suggested back surgery. He said it was very marginal ,but maybe that would help and something was going on that we didn't see..I declined ,because I had always reversed the back pain with manipulation (Chiropractors), Core exercises, bike riding (Cardio) and yoga and of course eating well and keeping my weight down. I knew something was different about this time.
I remember if I ever had to sit very long, I would stiffen up terribly. My entire body was hurting with a deep concentration of pain in the shoulders and hips and sits bone.
When My wife and I went to Mexico. It was at it's worst and as I napped for 3 hours during the day, which wasn't unusual, she got on the internet and looked up "Aches and pains of men over 60",. PMR showed up. As she was reading she got so excited ,because it sounded exactly like the symptoms I had. When I woke up she started to read it to me. I agreed, It was exactly what I felt like. I am a painter and my painting friend was a heart Dr. at the Mayo Clinic. He had seen me the day before and went onto the Mayo Clinic web site for information. That morning he ran through our door, saying,""Matt ,Matt, I know what you have, you have PMR."He said , "we can do a simple test to see if you have PMR by giving you some prednisone" Being in Mexico, we went down bought some, and I took it immediately. I forget the exact dose, but I believe it was 20-30 mg.. Within an hour I could feel it going through my body releasing the pain joint after joint until the pain was completely gone. Please remember It has been about 1 year, I had been dealing with this.The next day I was on the our roof. The pain was gone. From Mexico I called a DR. I knew, who recommended a Rhumitologist in Vancouver,Washington. I had to go off the prednisone to be tested, I believe it was for 2-3 weeks and of course the PMR came back with vengeance . After seeing the DR my blood work did not correspond with my diagnosis of PMR. She didn't think I had it, but she said let's treat it like it is PMR. I also over the months ahead found more than 11 different people with PMR and found that most women's blood work showed the symptoms and almost all the guys blood work did not. Again I started on Prednisone and the relief came immediately ,with first dose of 20 mg. Over the next few months (6???) I started the reduction program. At first I was fine until about 8 and which time I was told to go down in increments of 1mg. The only problem was the PMR pain always came back and stayed and I knew as all of us that have had this, I could not or did not want to deal with this horrific pain. I started a reduction plan of 1/4 of mg. The pain would return, but it would also leave after 2-4 maybe sometimes a little more, but I knew it wasn't going to last as long as the 1 mg. Finally I hit 1/4 mg and told my body this is the last you are getting. I have been free of any symptoms and I am 69 now.
In concluding this, this is what worked for me. The things I continued to do through this ordeal were, Reduce my stress through prayer and meditation(live in the present), Exercise and stretch, Eat well, sleep well, take those naps, Bike and try to get your body to produce it's natural chemicals through strenuous and aerobic exercise.(Biking is easy on the joints) Not excessive!, Slow life down, rest, drink lots of water, do things that bring you happiness, and that could mean, think outside yourself which I found hard when in the thick of the pain, be thankful for each person on this post, for them sharing their story and journey. Lastly ,each of us will go through this differently so what we do must be adapted to each individual
Blessings Matt
This will be my last post, but please share with others .

REPLY
@mhewit

Not sure how this works, but I have posted similar info before. Also, please forgive me for such a lengthy post, but I longed with all my being to find out what was happening to me and thought this may help some .
My Name is Matt, At 65 I was going through a situation with that caused a lot of stress. I have a back issue with my 4th vertebrae shifted forward and have dealt with back issues about 5-6 times over my life. I was having issues with my back again of course I thought the vertebrae's and the nerves contributed to this problem. I am also a very healthy Male and do yoga,Weight lift and lots of walking or biking. While i was going through the stress and back issues,I woke up one morning and shared with my wife I could barely get out of bed. Not sure what was going on ,I proceeded for several months with Chiropractors, acupuncture, Icing, over the counter pain pills ……….It was the most painful experience I have ever felt and over this time it had progressed from my hips, to my shoulders, sits bones, not my wrists. It felt like a nail was driven into each of those areas. Finally after months I went to a DR. that had helped me with my back 2 times previously. Really he did nothing before, except to say rest and take pain pills and always mentioned the back condition I had. This time he suggested a cortisone shot, which I had and it lasted about a week.Of course after a follow up visit, and all the pain had returned he suggested back surgery. He said it was very marginal ,but maybe that would help and something was going on that we didn't see..I declined ,because I had always reversed the back pain with manipulation (Chiropractors), Core exercises, bike riding (Cardio) and yoga and of course eating well and keeping my weight down. I knew something was different about this time.
I remember if I ever had to sit very long, I would stiffen up terribly. My entire body was hurting with a deep concentration of pain in the shoulders and hips and sits bone.
When My wife and I went to Mexico. It was at it's worst and as I napped for 3 hours during the day, which wasn't unusual, she got on the internet and looked up "Aches and pains of men over 60",. PMR showed up. As she was reading she got so excited ,because it sounded exactly like the symptoms I had. When I woke up she started to read it to me. I agreed, It was exactly what I felt like. I am a painter and my painting friend was a heart Dr. at the Mayo Clinic. He had seen me the day before and went onto the Mayo Clinic web site for information. That morning he ran through our door, saying,""Matt ,Matt, I know what you have, you have PMR."He said , "we can do a simple test to see if you have PMR by giving you some prednisone" Being in Mexico, we went down bought some, and I took it immediately. I forget the exact dose, but I believe it was 20-30 mg.. Within an hour I could feel it going through my body releasing the pain joint after joint until the pain was completely gone. Please remember It has been about 1 year, I had been dealing with this.The next day I was on the our roof. The pain was gone. From Mexico I called a DR. I knew, who recommended a Rhumitologist in Vancouver,Washington. I had to go off the prednisone to be tested, I believe it was for 2-3 weeks and of course the PMR came back with vengeance . After seeing the DR my blood work did not correspond with my diagnosis of PMR. She didn't think I had it, but she said let's treat it like it is PMR. I also over the months ahead found more than 11 different people with PMR and found that most women's blood work showed the symptoms and almost all the guys blood work did not. Again I started on Prednisone and the relief came immediately ,with first dose of 20 mg. Over the next few months (6???) I started the reduction program. At first I was fine until about 8 and which time I was told to go down in increments of 1mg. The only problem was the PMR pain always came back and stayed and I knew as all of us that have had this, I could not or did not want to deal with this horrific pain. I started a reduction plan of 1/4 of mg. The pain would return, but it would also leave after 2-4 maybe sometimes a little more, but I knew it wasn't going to last as long as the 1 mg. Finally I hit 1/4 mg and told my body this is the last you are getting. I have been free of any symptoms and I am 69 now.
In concluding this, this is what worked for me. The things I continued to do through this ordeal were, Reduce my stress through prayer and meditation(live in the present), Exercise and stretch, Eat well, sleep well, take those naps, Bike and try to get your body to produce it's natural chemicals through strenuous and aerobic exercise.(Biking is easy on the joints) Not excessive!, Slow life down, rest, drink lots of water, do things that bring you happiness, and that could mean, think outside yourself which I found hard when in the thick of the pain, be thankful for each person on this post, for them sharing their story and journey. Lastly ,each of us will go through this differently so what we do must be adapted to each individual
Blessings Matt
This will be my last post, but please share with others .

Jump to this post

Hi @mhewit, Thank you for sharing your PMR story. I hate to say it but I'll bet your story is pretty much the same for all of us who have ever experienced polymyalgia rheumatica (PMR). I've had two occurrences and your description almost perfectly described my first occurrence. I'm happy to say it's been in remittance for a few years now. You are so right about the lifestyle changes helping. I do believe they have played a major part in my journey with PMR. Thanks again!

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I was finally diagnosed with PMR on April 1st of this year after being passed to 5 different doctors. First my oncologist, then he passed me to my GP who passed me to the radiologist then to the neurologist (who actually diagnosed PMR) who sent me to the rheumatologist. I started symptoms of PMR at the end of January. Each doctor did blood work but no one picked up on the very high C Reactive Protein count. I had just finished my breast cancer treatments in December and have neuropathy from the chemo treatments so think the doctors were more focused on that than anything else. Anyway, I have been put on Prednisone 10 mgs and was given a butt shot (not sure for what, maybe cortisone) at the first visit. The symptoms went away immediately from not being ab le to get out of bed without a lot of pain in arms, shoulders, legs, hips, etc. to being completely pain free. I was advised to drop a mg every two weeks so am now down to 7 mgs in a few days. So far so good. I was overweight and have lost 60 lbs since chemo which is a little too much, but since Prednisone have now started to gain a little more. I really appreciate this board as I'm learning things that were not mentioned by the doctor. I'm eating right, sleeping well, but have a hard time doing a lot of exercising as I get so fatigued so fast. Does fatigue go along with the Prednisone?

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@ncgal

I was finally diagnosed with PMR on April 1st of this year after being passed to 5 different doctors. First my oncologist, then he passed me to my GP who passed me to the radiologist then to the neurologist (who actually diagnosed PMR) who sent me to the rheumatologist. I started symptoms of PMR at the end of January. Each doctor did blood work but no one picked up on the very high C Reactive Protein count. I had just finished my breast cancer treatments in December and have neuropathy from the chemo treatments so think the doctors were more focused on that than anything else. Anyway, I have been put on Prednisone 10 mgs and was given a butt shot (not sure for what, maybe cortisone) at the first visit. The symptoms went away immediately from not being ab le to get out of bed without a lot of pain in arms, shoulders, legs, hips, etc. to being completely pain free. I was advised to drop a mg every two weeks so am now down to 7 mgs in a few days. So far so good. I was overweight and have lost 60 lbs since chemo which is a little too much, but since Prednisone have now started to gain a little more. I really appreciate this board as I'm learning things that were not mentioned by the doctor. I'm eating right, sleeping well, but have a hard time doing a lot of exercising as I get so fatigued so fast. Does fatigue go along with the Prednisone?

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Hi there ncgal. When I was diagnosed last summer I was started on 15 mg of prednisone and felt like superwoman. I actually felt very good (other than weight gain) until I got below 10 mgs. and then I started experiencing some pain and fatigue. At 7 mgs. I hit a pain wall and had to go back up to 8. Right now I take 7.5 one day and 7 the next trying to continue to wean slowly. Fatigue and some pain seem to be part of the tapering process.

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Thanks kmeikle1 for your reply. Good to know that fatigue goes along with tapering off process. I can do about 20/30 minutes of gardening before having to sit down and rest. Good luck with your progress.

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@ncgal

I was finally diagnosed with PMR on April 1st of this year after being passed to 5 different doctors. First my oncologist, then he passed me to my GP who passed me to the radiologist then to the neurologist (who actually diagnosed PMR) who sent me to the rheumatologist. I started symptoms of PMR at the end of January. Each doctor did blood work but no one picked up on the very high C Reactive Protein count. I had just finished my breast cancer treatments in December and have neuropathy from the chemo treatments so think the doctors were more focused on that than anything else. Anyway, I have been put on Prednisone 10 mgs and was given a butt shot (not sure for what, maybe cortisone) at the first visit. The symptoms went away immediately from not being ab le to get out of bed without a lot of pain in arms, shoulders, legs, hips, etc. to being completely pain free. I was advised to drop a mg every two weeks so am now down to 7 mgs in a few days. So far so good. I was overweight and have lost 60 lbs since chemo which is a little too much, but since Prednisone have now started to gain a little more. I really appreciate this board as I'm learning things that were not mentioned by the doctor. I'm eating right, sleeping well, but have a hard time doing a lot of exercising as I get so fatigued so fast. Does fatigue go along with the Prednisone?

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Whar is PMR pain?

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In reply to @peach414144 "Whar is PMR pain?" + (show)
@peach414144

Whar is PMR pain?

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PMR (polymyalgia Rheumatica) is an inflammatory autoimmune disorder that causes pain in your joints and muscles. It is extremely painful and upsets your quality of life. Don't know how else to describe it, but if you have it , you know it. Prednisone relieves it almost immediately. There is no cure for it, but it can be manageable. It can resurface at any time which means upping the Prednisone mgs again. I'm sure John can explain it better. Hope this helps.

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One thing that I've experienced is that the pain I feel now as I'm tapering (cureently 7 – 7.5) is different than the pain I felt before I was diagnosed. It's no longer consistent; it moves around. Before diagnosis I was nearly paralyzed with pain in my thighs and shoulders, etc. Now I seem to have pain in random places (different areas of my leg, buttocks, etc.), but I can tell it's definitely PMR pain.

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@ncgal

PMR (polymyalgia Rheumatica) is an inflammatory autoimmune disorder that causes pain in your joints and muscles. It is extremely painful and upsets your quality of life. Don't know how else to describe it, but if you have it , you know it. Prednisone relieves it almost immediately. There is no cure for it, but it can be manageable. It can resurface at any time which means upping the Prednisone mgs again. I'm sure John can explain it better. Hope this helps.

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Peach @peach414144 – you described the PMR pain perfectly 😊 I like to call it the big hurt.

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I KNOW WHAT YOU MEAN WITH BEING PARALYZED WITH THE PAIN ACROSS MY SHOULDERS AND HIP GIRDLE, I COULD NOT MOVE OUT OF BED BUT WHEN THEY PUT ME ON THE PRED THE PAIN LEFT. THANK GOODNESS I HAVE HAD NONE SINCE THAT TIME BUT PROBABLY WILL SINCE I AM IN THE TAPER DOWN STAGE NOW. WITH ALL THE CRAZY STUFF THAT IS GOING ON IN THE WORLD IT IS WHAT IT IS SO I WILL DEAL WITH IT! I JUST WANT TO GET MY SENSE OF SMELL AND TASTE BACK NOW SO I CAN ENJOY MY FOOD!!

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