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

@txluvbug2003

I am on 4mg also and have been experiencing pain on my outer foot also. Didn’t know if it was a symptom also thanks for sharing

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Hello @txluvbug2003, Welcome to Connect. According to the National Organization for Rare Disorders, the lower arms, hands, lower legs, and feet (distal extremities) are not usually affected by this disorder.

Polymyalgia Rheumatica: https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/

When I was first diagnosed with PMR, I was having pain and swelling in my right foot along with pain in my arms and shoulders. When I finally went to the doctor, I found out I had gout in my right foot and a few weeks later the rheumatologist diagnosed me with PMR and put me on prednisone. I've had another occurrence of PMR since the first one but it's now in remission and I'm hoping it stays there.

When were you first diagnosed with PMR?

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@kmeikle1

I'm discouraged because it took a lot for me to get from 15 mgs to 7 mgs and now I went back up to 10. So you just kept working through to get lower on prednisone even with pain and discomfort? Thanks for sharing…it helps to know I'm not alone.

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It has been quite some time since I have back to the group My initial diagnosis was a self diagnosis because I could not get in to see my GP A second DR did not ask the right questions but gave me Tylenol with codeine for the extreme pain I was having I have several severe issues , including serious degenerative disc disease, serious muscle and joint pain from Letrozole as a follow up to breast cancer as well as two hip replacement from osteoarthritis So when I started having very severe pain in my shoulders, muscles and down my arm I knew something had changed I am an OLD pharmacist and still read a lot of medical research papers
So when I looked at the PMR , I realized I checked every box and particularly my Scandinavian heritage on both sides of my family I managed to get a C Reactive Protein Blood test and it showed high rate of inflammation My GP saw it and immediately agreed with my self diagnosis and started me on 30 mg per day
I finally got in the see my rheumatologist, who wanted me to taper at 5mg per day until I got to 20 then 2.5 until 10 I had discovered a split dose worked best for me , but even then at 10 I had a flare My rheumatologist wanted me to go back to 13 for a month of and then to 9 That did not work , so I put myself at 15 and that helps lot So I have now tried a new method of tapering which so far is working very well Still using a split dose, I developed a schedule which I read about on the British National health site similar to this site

I took the initial 15 (10-5) for 5 days , then 9 and 5 one day , back to 10-5 , then down to 9 and 5 for 3 days, then then , 9 and 4 for 1 day , back to 9,and 5 for 2 days etc
I am now at 7 and 5 and will repeat going back and forth slowly until it I get to 9
It is working very well each time The National Health site says that this method appears to work best for some people When I get to 9 , I will stay at my higher dose days A little longer , before reducing EacH time you get closer to 7 you stay 4 or 5 days longer than you do above 10
It is strange to me that we all experience PMR so differently but it is important to remember My rheumatologist tells me it important that you do not try to tough it out The goal is to take the least amount that allows your pain to be controlled I also read that some a Rheumatologists are now leaving patients on up to 2 mg per day for life to help reduce the risk of recurrence if the PMR

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I wonder if the doctor thinks the risk/benefit analysis comes down on the side of the side effects, particularly osteoporosis. I have a large frame, have been told my Dexa exam showed "the bones of a young adult" I am 81. If I go below 10 mg. I become symptomatic. After three times during the last year trying to wean off, I was clearly being maintained on an insufficient dose to be useful. Exercising is not possible when quadricep muscles simply will not work and are painful, as is the pelvic girdle. Deltoids refuse to help getting out of a chair. I still have PMR, and I cannot manage daily living below 10mg/day. I think there are cases where a more prolonged use of steroid is mandatory. On 5 mg, I have trouble getting out of bed, and I sit in a chair all day because moving is so painful and the weakness makes me unstable. I lose muscle strength from inactivity. And yes, I am a pianist, and cannot sit at the piano and play when symptomatic.

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@mompiano

I wonder if the doctor thinks the risk/benefit analysis comes down on the side of the side effects, particularly osteoporosis. I have a large frame, have been told my Dexa exam showed "the bones of a young adult" I am 81. If I go below 10 mg. I become symptomatic. After three times during the last year trying to wean off, I was clearly being maintained on an insufficient dose to be useful. Exercising is not possible when quadricep muscles simply will not work and are painful, as is the pelvic girdle. Deltoids refuse to help getting out of a chair. I still have PMR, and I cannot manage daily living below 10mg/day. I think there are cases where a more prolonged use of steroid is mandatory. On 5 mg, I have trouble getting out of bed, and I sit in a chair all day because moving is so painful and the weakness makes me unstable. I lose muscle strength from inactivity. And yes, I am a pianist, and cannot sit at the piano and play when symptomatic.

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Hello @mompiano, Welcome to Mayo Clinic Connect. PMR can definitely keep a person from doing pretty much anything when the disease is active and you are in pain. It took me 3-1/2 years to taper off of prednisone for my first occurrence of PMR and 1-1/2 years the second time. My rheumatologist did tell me that a small percentage of people are not able to taper completely off and do keep taking a smaller dosage. You mentioned you have been trying to wean off of prednisone this past year. When were you diagnosed with PMR and started on prednisone?

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@johnbishop

Hello @mompiano, Welcome to Mayo Clinic Connect. PMR can definitely keep a person from doing pretty much anything when the disease is active and you are in pain. It took me 3-1/2 years to taper off of prednisone for my first occurrence of PMR and 1-1/2 years the second time. My rheumatologist did tell me that a small percentage of people are not able to taper completely off and do keep taking a smaller dosage. You mentioned you have been trying to wean off of prednisone this past year. When were you diagnosed with PMR and started on prednisone?

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Diagnosed with PMR in May 2020 after suffering for several months with occasional courses of prednisone. Had 13 blood tests to diagnose the cause for everything from Lyme's to lupus to Dengue Fever. Finally sent to a rheumatologist who concluded it was PMR.

I was started on 10MG of prednisone in May which has been slowly reduced to 6MG presently and ultimately 5 MG in mid October. At about the 7 MG dosage, I started feeling some pain, but not distracting. However, I am Type II diabetic and also have hypertension. Both my Blood glucose and blood pressure had gone out of control and after adjusting those medications, it seems BP and BG are now normal after some scary symptoms.

I joined this discussion group after reading this can be a long term condition. I was expecting maybe one year of treatment and then PMR would go away, but the stories shared indicate it can last years and return. I am 72 and led a very active lifestyle. Since PMR, I have to force myself to get things done.

Are there any alternatives to prednisone that work without the side effects? I have read that CBD oil helps, but cannot find any research that backs up the claims. I live in Colorado where CBD oil and cannabis are legal, but am skeptical about effectiveness. I p!an to discuss with my rheumatologist and wanted some feedback before that happens in November.

I wish you all the very best, Bob

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@bob48

Diagnosed with PMR in May 2020 after suffering for several months with occasional courses of prednisone. Had 13 blood tests to diagnose the cause for everything from Lyme's to lupus to Dengue Fever. Finally sent to a rheumatologist who concluded it was PMR.

I was started on 10MG of prednisone in May which has been slowly reduced to 6MG presently and ultimately 5 MG in mid October. At about the 7 MG dosage, I started feeling some pain, but not distracting. However, I am Type II diabetic and also have hypertension. Both my Blood glucose and blood pressure had gone out of control and after adjusting those medications, it seems BP and BG are now normal after some scary symptoms.

I joined this discussion group after reading this can be a long term condition. I was expecting maybe one year of treatment and then PMR would go away, but the stories shared indicate it can last years and return. I am 72 and led a very active lifestyle. Since PMR, I have to force myself to get things done.

Are there any alternatives to prednisone that work without the side effects? I have read that CBD oil helps, but cannot find any research that backs up the claims. I live in Colorado where CBD oil and cannabis are legal, but am skeptical about effectiveness. I p!an to discuss with my rheumatologist and wanted some feedback before that happens in November.

I wish you all the very best, Bob

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Hello @bob48, Welcome to Mayo Clinic Connect. I've had 2 occurrences of PMR and it is currently in remission. I have no medical background or training but I am pretty sure that the prednisone controls the cause of the muscle and joint pain which is inflammation. What has helped me more than anything is staying active as much as possible while not overdoing it and changing my eating habits. I also take a few supplements which I believe help keep the PMR in check as I don't think you ever get rid of it, it just goes into remission.

You might find the following articles helpful:

– Diet and Supplements for Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr
– Polymyalgia rheumatica diet: Foods to eat and avoid: https://www.medicalnewstoday.com/articles/321683
– 3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

I have no experience with CBD oil or medical cannabis since I was able to taper off of prednisone and my PMR went into remission. @artscaping may have some information to share with you on it's use for relieving pain. Here's a study I found that has some information that might help you.

– Medical Cannabis Use by Rheumatology Patients Following Recreational Legalization: A Prospective Observational Study of 1000 Patients in Canada: https://onlinelibrary.wiley.com/doi/full/10.1002/acr2.11138

After you meet with your rheumatologist and make a decision can you come back and give use an update?

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I have had PMR for over four years. I am 62. I started at 15 mg of prednisone and it was life changing. I forgot what it felt like to be out of pain and to stand without stiffness! My doctor has added methotrexate. I was able to reduce to 8 mg. But no lower. I slowly got to 5mg and started needing a walker! I could hardly get off the toilet, get dress, brush my hair, turn over in bed, etc. So I am just relaxing and staying at 8mgs. Tired of the battle of trying to reduce and feeling lousy. Maybe in a few months, but I am still dealing with PMR, and it has not gone away. I was beginning to think I had no hope for my future because when I titrated to 5mg I was so handicapped and miserable. But at 8mgs I can function and have my life back. Yeah, its tough.

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Agree. May not like taking pred. But what good is life if you can’t do a thing and it’s painful when you do.

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Hello @marirose and @roberta125, Welcome to Mayo Clinic Connect. Prednisone is definitely the drug of choice for dealing with the pain and inflammation from PMR even though none of us like taking it. The trick for tapering off can be different for each of us but one thing seems to be common – slow and steady tapering helps most of the time. My first occurrence with PMR took about 3-1/2 years to taper off with the last six months going between 1 mg and 1/2 mg prednisone until I was able to stop taking the drug. What helped me a lot was working with my rheumatologist on a tapering schedule and getting a prescription of the 1 mg and 2.5 mg tablets to make the tapering by small increments easier. When I got to the lower numbers, I would split the 1 mg tablets. Another thing that helped was trying to stay active with mild exercise and eating a little healthier by trying to avoid foods that are inflammatory. Here are a couple of articles you may find helpful.

– Foods that fight inflammation: https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation
– 3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Have you tried making any lifestyle changes to help with your PMR?

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I realize that tapering down on prednisone very slowly is the preferred known treatment for PMR. I too have been on a taper down program for about 2-1/2 years and currently on 2 mg. The PMR has gone away, or so it seems. So far so good. However I recently started having sudden unexplained severe ankle pain for no reason. And hip pain too though that is lesser an issue. I am now on a wild goose chase of testing because X-rays and bloodwork show nothing. In addition recent bone density test shows worsening osteopenia. Has anyone studied the benefit of pure high quality THC-free CBD oil as an alternative to being on low doses of prednisone?? My extensive on-line research shows many people have made the switch once they have tapered down and gotten relief and no side effects. Of course you cannot be on prednisone and CBD together at same time. But is anyone out there having success with switching to CBD??? Why aren't we talking about this?? I can't believe that being on toxic prednisone forever is the only way. And how about acupuncture??? I live in a small non-progressive town and inquiries met with silence.

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@dmsbronch

I realize that tapering down on prednisone very slowly is the preferred known treatment for PMR. I too have been on a taper down program for about 2-1/2 years and currently on 2 mg. The PMR has gone away, or so it seems. So far so good. However I recently started having sudden unexplained severe ankle pain for no reason. And hip pain too though that is lesser an issue. I am now on a wild goose chase of testing because X-rays and bloodwork show nothing. In addition recent bone density test shows worsening osteopenia. Has anyone studied the benefit of pure high quality THC-free CBD oil as an alternative to being on low doses of prednisone?? My extensive on-line research shows many people have made the switch once they have tapered down and gotten relief and no side effects. Of course you cannot be on prednisone and CBD together at same time. But is anyone out there having success with switching to CBD??? Why aren't we talking about this?? I can't believe that being on toxic prednisone forever is the only way. And how about acupuncture??? I live in a small non-progressive town and inquiries met with silence.

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I do not have any knowledge about using CBD as a replacement for Predisone, but am very interested in learning about it. Also, why do you say that Prednisone and CBD can’t be used at the same time? How do the chemicals interact?

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Hello, I too am very interested in this topic. John, any insight to low dosage of Prednisone in conjunction with CBD?

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