How to address PMR pain while decreasing prednisone

Hi @lioness, thanks for your private message. You mentioned you have the same diagnosis I have and you also have a L2 fracture so your thighs hurt all the time. You said that hot showers help but that is short lived -- where the muscles attach to the bones ,knee ,hips,ankles in particular.

When I first get up in the morning it's difficult for me to walk and move in general. I've had this old man PMR shuffle since I was in my 50s is what my wife told me ☺ I try to ride my recumbent exercise bike first thing in the morning for 30 minutes at least 4 or 5 days a week, not at a strenuous pace but enough just enough to be comfortable that I'm moving. It really helps loosen my joints and get around easier. I do a few stretching exercises also to try and get the other parts moving besides the legs. I like hot showers too but it is like you say -- short lived.

I also have osteopenia and my doctor suggested I add 1200 mg daily of calcium. About six months ago I started taking 1 tablespoon of a Collagen Hydrolysate supplement that is water soluble so I mix it in a glass of water and it's pretty tasteless. It helps with joints, ligaments and connective tissue. One of the side benefits is it good for nails. My wife was amazed with how her nails now grow and are stronger. I really never noticed that even though it's listed as a benefit. I'm not sure it helps with the PMR but I feel like anything I can do that's more natural is better than drugs. I would like not to have to take steroids which is why we all struggle to get off of that stuff.

Thanks for letting me bring your question back into the discussion!

John

@johnbishop I also take calcium after breaking my pinky toe while putting on my compression stockings. Lots of pain now, can barely walk, but I keep trying.

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

Hi @lioness, thanks for your private message. You mentioned you have the same diagnosis I have and you also have a L2 fracture so your thighs hurt all the time. You said that hot showers help but that is short lived -- where the muscles attach to the bones ,knee ,hips,ankles in particular.

When I first get up in the morning it's difficult for me to walk and move in general. I've had this old man PMR shuffle since I was in my 50s is what my wife told me ☺ I try to ride my recumbent exercise bike first thing in the morning for 30 minutes at least 4 or 5 days a week, not at a strenuous pace but enough just enough to be comfortable that I'm moving. It really helps loosen my joints and get around easier. I do a few stretching exercises also to try and get the other parts moving besides the legs. I like hot showers too but it is like you say -- short lived.

I also have osteopenia and my doctor suggested I add 1200 mg daily of calcium. About six months ago I started taking 1 tablespoon of a Collagen Hydrolysate supplement that is water soluble so I mix it in a glass of water and it's pretty tasteless. It helps with joints, ligaments and connective tissue. One of the side benefits is it good for nails. My wife was amazed with how her nails now grow and are stronger. I really never noticed that even though it's listed as a benefit. I'm not sure it helps with the PMR but I feel like anything I can do that's more natural is better than drugs. I would like not to have to take steroids which is why we all struggle to get off of that stuff.

Thanks for letting me bring your question back into the discussion!

John

Hi @lioness, thanks for your private message. You mentioned you have the same diagnosis I have and you also have a L2 fracture so your thighs hurt all the time. You said that hot showers help but that is short lived -- where the muscles attach to the bones ,knee ,hips,ankles in particular.

When I first get up in the morning it's difficult for me to walk and move in general. I've had this old man PMR shuffle since I was in my 50s is what my wife told me ☺ I try to ride my recumbent exercise bike first thing in the morning for 30 minutes at least 4 or 5 days a week, not at a strenuous pace but enough just enough to be comfortable that I'm moving. It really helps loosen my joints and get around easier. I do a few stretching exercises also to try and get the other parts moving besides the legs. I like hot showers too but it is like you say -- short lived.

I also have osteopenia and my doctor suggested I add 1200 mg daily of calcium. About six months ago I started taking 1 tablespoon of a Collagen Hydrolysate supplement that is water soluble so I mix it in a glass of water and it's pretty tasteless. It helps with joints, ligaments and connective tissue. One of the side benefits is it good for nails. My wife was amazed with how her nails now grow and are stronger. I really never noticed that even though it's listed as a benefit. I'm not sure it helps with the PMR but I feel like anything I can do that's more natural is better than drugs. I would like not to have to take steroids which is why we all struggle to get off of that stuff.

Thanks for letting me bring your question back into the discussion!

John

Hi Barbararene,
I have been meaning to write for a few days and finally have a few moments to myself! I was diagnosed with PMR on March 4, 2015 by my primary care doctor who is a D.O. and very much into natural healing as opposed to drugs. I remember when she said it, it looked like she had an epiphany! I guess she put it all together--my high inflammation markers and terrible pain across my shoulders and in my arms that wouldn't go away. I was already on Tramadol but that did not help this. She said the standard drug for PMR is prednisone but she did not want to put me on it because of my higher glucose level. Most often it was near 120 and I was not on any medication, just controlled it with diet, so she didn't want it to go higher or for me to have to take a drug.

There is a whole story as to how I came to the following, but I'll spare you the details and just tell you that we found that methylprednisolone did not raise glucose levels as much as regular prednisone. So, after she tried me on Methotrexate (the 'other' drug of choice) and I got so sick on just one dose of it, she put me on the methylprednisolone 4 mg. I have been on this dosage from the beginning and have tried a few times to go lower by taking 1/2 pill one day then the whole pill for a few days, etc. I could never get to a lower dosage without my pain coming back. In fact, at the 4 mg dosage I still have a little pain in my arms especially when I get up in the morning and sometimes in the late afternoon but I'm not into raising the dosage.

I was wondering if anyone on here could tell me how long it has taken for them to go into remission. I know everyone is different, but I guess I'd like to know if there is some light at the end of this tunnel??? And, Barbara, I'm with you, I drink some wine also but have been thinking of giving it up to see if that helps.