Hi. I was 46 years old when diagnosed with PMR. I am now 53. I have been on prednisone for 7 years. I have recently had a bone density scan and have the bone density of an 85 year old. I have since decided to go off prednisone and I am now in pain again. I want to try and do everything I can do improve my bone density.
Everything I read says it only last for 2 years! But maybe if you get it young it lasts for longer. My doctor doesn’t seem to care (or have time to care I suppose).
Does anyone have any natural treatment that has helped? Either with reducing pain or improving bone density?
I am 60 and was diagnosed in August with pre. I started on 20 mg and have tapered down to 7. I need to get off of prednisone as soon as possible because of my osteoporosis. I take Evenity shots once a month for my bones. You should check into it. I have had 3 shots and so far no side affects. I’ve had a hard time getting past 7 mg. Going at a rate of 1 mg a month but may have to consider 1/2 mg taper instead because of the pain.
I developed severe PMR basically on my 55th birthday. It went misdiagnosed for 2 months because most Dr's assume its a Senior's disease, but my Specialist said there are many false beliefs about PMR and he sees as many patients age 50-55 as he does in any other similar age group, but never under age 50. I am 57 and still struggling to reduce my prednisone dose. I just reduced from 10mg to 9 and am having a bad flare up, so not sure what to increase to and it will take many weeks to see my Doctor. I do fear that being diagnosed earlier and having a severe case may be an indication of a long term condition. Tapering prednisone has been a difficult process.
Tapering slowly is generally better but the determining factor is more about how long a person has been on Prednisone.
"People who haven't been taking prednisone for very long may have their dose decreased by a little each day. People who have been taking prednisone for a very long time may need a much slower taper. In some cases, the dose may be decreased monthly."
If you taper too slowly ... that isn't good either. My rheumatologist says the million dollar questions about prednisone and tapering off prednisone are the following.
How much is too much prednisone?
and
When taking Prednisone ... How long is too long??
Research has yet to answer these basic questions. Prednisone dysregulates many bodily functions including the regulation of inflammation.
I was at age 54 PMR. Hips shoulders and buttocks pain. Prednisone 10 mg twice a day morning and night. Tried tapering it down to 7.5 but too much pain in the am when I wake up! So still taking 10 mgs twice a day for about 3 weeks now.
I was at age 54 PMR. Hips shoulders and buttocks pain. Prednisone 10 mg twice a day morning and night. Tried tapering it down to 7.5 but too much pain in the am when I wake up! So still taking 10 mgs twice a day for about 3 weeks now.
Welcome @tinmanneedsoil, Sorry to hear you joined the PMR club. It can be tricky tapering down on prednisone. Slower the better most of the time and some doctors don't get that part. My Mayo rheumatologist told me that I need to listen to my body when it comes to tapering my prednisone dose. Have been in remission for over six years now from my second round with PMR.
It sounds like you were recently diagnosed 3 weeks or so ago. If that's the case you are way early in the game of tapering. We are all different when it comes to PMR pain and tapering but I think the average length of time for getting off of prednisone with PMR is 2 to 5 years. My first time took 3 and half years, second time took 1 and half years to taper off. You might want to read check out the following discussion to learn what others have shared.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
May I ask how long ago you were diagnosed with PMR and started treatment?
Welcome @tinmanneedsoil, Sorry to hear you joined the PMR club. It can be tricky tapering down on prednisone. Slower the better most of the time and some doctors don't get that part. My Mayo rheumatologist told me that I need to listen to my body when it comes to tapering my prednisone dose. Have been in remission for over six years now from my second round with PMR.
It sounds like you were recently diagnosed 3 weeks or so ago. If that's the case you are way early in the game of tapering. We are all different when it comes to PMR pain and tapering but I think the average length of time for getting off of prednisone with PMR is 2 to 5 years. My first time took 3 and half years, second time took 1 and half years to taper off. You might want to read check out the following discussion to learn what others have shared.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
May I ask how long ago you were diagnosed with PMR and started treatment?
Thanks John, they haven’t officially diagnosed me yet but my rheumatologist is assuming that I have PMR from my blood test and the pains shoulders hips buttocks and knees.
I’ve been on prednisone for about 3 weeks now and take 10 mg morning and 10 mg at night.
I’ve tried taking less like 7.5 but get pain, so I’ve just been listening to my body.
Thank you
Thanks John, they haven’t officially diagnosed me yet but my rheumatologist is assuming that I have PMR from my blood test and the pains shoulders hips buttocks and knees.
I’ve been on prednisone for about 3 weeks now and take 10 mg morning and 10 mg at night.
I’ve tried taking less like 7.5 but get pain, so I’ve just been listening to my body.
Thank you
I have another appointment on the 15 th of this month for another blood test with the rheumatologist. Then I will find out for-sure if I have PMR or not ounce he gets the blood results.
I have PMR, 5 years now. My blood work has never showed any + signs of inflammation. I’m told a certain % don’t. (20%) I got off prednisone about 2 years ago just couldn’t tolerate the side effects anymore and my PMR is out of control. I can walk only short distances, measured in feet. My hands, arms, legs are involved. Numbness, tingling, pain in my biceps and most prevalent exhaustion. I’d say I have a serious case. I’ve tried 2 biologics (injectables) since getting off pred nothing…. Kevzara and Actrema. really feel terrible most days and now have a lengthy list of “things” that effect my pain level. I’m 75 now and think often of the end of my life, I’m ready! I was active, swam, exercised a lot and planned my week around these activities. Now I cancel more things than I do. I hate prednisone so much, I wish there were something else to try. Oh, also tried hydroxychloraquine…severe reaction.
Anyone heard of anything else?
I have PMR, 5 years now. My blood work has never showed any + signs of inflammation. I’m told a certain % don’t. (20%) I got off prednisone about 2 years ago just couldn’t tolerate the side effects anymore and my PMR is out of control. I can walk only short distances, measured in feet. My hands, arms, legs are involved. Numbness, tingling, pain in my biceps and most prevalent exhaustion. I’d say I have a serious case. I’ve tried 2 biologics (injectables) since getting off pred nothing…. Kevzara and Actrema. really feel terrible most days and now have a lengthy list of “things” that effect my pain level. I’m 75 now and think often of the end of my life, I’m ready! I was active, swam, exercised a lot and planned my week around these activities. Now I cancel more things than I do. I hate prednisone so much, I wish there were something else to try. Oh, also tried hydroxychloraquine…severe reaction.
Anyone heard of anything else?
I have nothing close to your experiences. But the herb Kratom takes care of flares in less than an hour (it can return but for that time it provides me significant relief.).
I've tried several strains and the only one that works with this extreme positive effects is "Special Green Maylay" purchases through the company Mitragaia
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I am 60 and was diagnosed in August with pre. I started on 20 mg and have tapered down to 7. I need to get off of prednisone as soon as possible because of my osteoporosis. I take Evenity shots once a month for my bones. You should check into it. I have had 3 shots and so far no side affects. I’ve had a hard time getting past 7 mg. Going at a rate of 1 mg a month but may have to consider 1/2 mg taper instead because of the pain.
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1 ReactionI suggested to my brother that he get tested. With all his widespread muscle and joint issues, no one thought of that? Hmmm….
People seem to have good outcomes with tapering 1/2 mg at a time when you get to 10mg. You'll get there!
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1 ReactionTapering slowly is generally better but the determining factor is more about how long a person has been on Prednisone.
"People who haven't been taking prednisone for very long may have their dose decreased by a little each day. People who have been taking prednisone for a very long time may need a much slower taper. In some cases, the dose may be decreased monthly."
https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242#:~:text=People%20who%20haven't%20been,dose%20may%20be%20decreased%20monthly.If you taper too slowly ... that isn't good either. My rheumatologist says the million dollar questions about prednisone and tapering off prednisone are the following.
How much is too much prednisone?
and
When taking Prednisone ... How long is too long??
Research has yet to answer these basic questions. Prednisone dysregulates many bodily functions including the regulation of inflammation.
-
Like -
Helpful -
Hug
1 ReactionI was at age 54 PMR. Hips shoulders and buttocks pain. Prednisone 10 mg twice a day morning and night. Tried tapering it down to 7.5 but too much pain in the am when I wake up! So still taking 10 mgs twice a day for about 3 weeks now.
Welcome @tinmanneedsoil, Sorry to hear you joined the PMR club. It can be tricky tapering down on prednisone. Slower the better most of the time and some doctors don't get that part. My Mayo rheumatologist told me that I need to listen to my body when it comes to tapering my prednisone dose. Have been in remission for over six years now from my second round with PMR.
It sounds like you were recently diagnosed 3 weeks or so ago. If that's the case you are way early in the game of tapering. We are all different when it comes to PMR pain and tapering but I think the average length of time for getting off of prednisone with PMR is 2 to 5 years. My first time took 3 and half years, second time took 1 and half years to taper off. You might want to read check out the following discussion to learn what others have shared.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
May I ask how long ago you were diagnosed with PMR and started treatment?
-
Like -
Helpful -
Hug
2 ReactionsThanks John, they haven’t officially diagnosed me yet but my rheumatologist is assuming that I have PMR from my blood test and the pains shoulders hips buttocks and knees.
I’ve been on prednisone for about 3 weeks now and take 10 mg morning and 10 mg at night.
I’ve tried taking less like 7.5 but get pain, so I’ve just been listening to my body.
Thank you
-
Like -
Helpful -
Hug
3 ReactionsI have another appointment on the 15 th of this month for another blood test with the rheumatologist. Then I will find out for-sure if I have PMR or not ounce he gets the blood results.
-
Like -
Helpful -
Hug
1 ReactionI have PMR, 5 years now. My blood work has never showed any + signs of inflammation. I’m told a certain % don’t. (20%) I got off prednisone about 2 years ago just couldn’t tolerate the side effects anymore and my PMR is out of control. I can walk only short distances, measured in feet. My hands, arms, legs are involved. Numbness, tingling, pain in my biceps and most prevalent exhaustion. I’d say I have a serious case. I’ve tried 2 biologics (injectables) since getting off pred nothing…. Kevzara and Actrema. really feel terrible most days and now have a lengthy list of “things” that effect my pain level. I’m 75 now and think often of the end of my life, I’m ready! I was active, swam, exercised a lot and planned my week around these activities. Now I cancel more things than I do. I hate prednisone so much, I wish there were something else to try. Oh, also tried hydroxychloraquine…severe reaction.
Anyone heard of anything else?
-
Like -
Helpful -
Hug
1 ReactionI have nothing close to your experiences. But the herb Kratom takes care of flares in less than an hour (it can return but for that time it provides me significant relief.).
I've tried several strains and the only one that works with this extreme positive effects is "Special Green Maylay" purchases through the company Mitragaia