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

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.

Liked by karinaph

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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?

Liked by karinaph

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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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@lumberjill

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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@lumberjill, I have no experience with CBD topical oils although I do take 1.5 oz of organic hemp oil daily for the omega-3 benefits. Considering that the CBD might help with pain but is not doing anything to address the inflammation, I personally would not think it's beneficial but I have no medical knowledge or background and it's just my opinion. The prednisone addresses the inflammation which is the root cause of the pain in PMR.

Liked by karinaph

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In the early stages of my PMR before it was diagnosed I used CDB for a week or two. Absolutely no help. Prednisone was the magic bullet.

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I have some experience with acupuncture. In my first bout of PMR (15 years ago), I had tendinitis (which my rheumatologist said was a risk with PMR). I did acupuncture twice while on prednisone. It worked for the tendenitis, but I had other side effects from the acupuncture. In the past 3 years, I went on prednisone for PMR for 10 months and felt I decreased and went off pred too quickly. In the 10 months I was off, I had a bad knee problem and something feeling like tendenitis in my leg. I had several acupuncture treatments, but seemed to make it worse. The acupuncturist told me something interesting. She said that acupuncture can be used to strengthen the immune system, so may make an autoimmune disease worse. Not sure if PMR is autoimmune, but the acupuncture didn’t help. About 2 months late, I had 60 cc’s of fluid removed from my knee and given a cortisone shot. The next day, the knee felt wonderful and so did I. I slept and woke up pain-free. About 3 weeks later, PMR is back, hurting all over. In retrospect, I think it was there all the time. When I got the cortisone shot, it also provided systemic relief. I have now been on prednisone almost a year, down to 5 mg, taking the taper very slowly. The good thing is my knee has no pain and I walk an hour a day.

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good topic. I too am curious as to why the two cannot be taken at the same time. Please explain.
My experience with CBD oil from hemp is for sleep. I take .5 ml at night sublingual ( 16 mg of CBD) from
A very reputable company that sources all plant material from an organic hemp farm. It help me sleep which is one of the problems I’m having being on prednisone. I also use a CBD salve for pain stiffness in hands, lower back( likely not related to PMR). This is my second try at tapering, currently at 11, dropping .5 mg every two weeks , fingers crossed. Btw, I hate the p too, but had severe GCA symptoms,, had to go back on P to alleviate the headaches, vision distortion and jaw stiffness.

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I'm not an expert but its my understanding that both prednisone and CBD inhibit a certain enzyme BUT CBD is a big inhibitor. I believe therefore the corticosteroid side effects (that we all hate) will be worse. Simply put CBD increases the concentration of prednisone in your body. So if prednisone keeps you awake you may be exasperating your problem if you take CBD oil. Maybe if you are on smaller dosages it is okay. I hope someone else will weigh in on your question.

Liked by karinaph

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@dmsbronch

I'm not an expert but its my understanding that both prednisone and CBD inhibit a certain enzyme BUT CBD is a big inhibitor. I believe therefore the corticosteroid side effects (that we all hate) will be worse. Simply put CBD increases the concentration of prednisone in your body. So if prednisone keeps you awake you may be exasperating your problem if you take CBD oil. Maybe if you are on smaller dosages it is okay. I hope someone else will weigh in on your question.

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@karinaph and @dmsbronch. I saw your comments the other day about CBD and prednisone so I had a discussion with my doctor yesterday. I had just started CBD oil and patches and was worried about interaction. He said that as long as the amounts I use were small, there wasn’t a problem. The problem starts if I take 15mg per kg squared of body weight. For me that would mean 900+ msg a day! That’s a lot! h
He has had medical education in the use of marijuana for cancer patients and I really trust him.

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@becsbuddy

@karinaph and @dmsbronch. I saw your comments the other day about CBD and prednisone so I had a discussion with my doctor yesterday. I had just started CBD oil and patches and was worried about interaction. He said that as long as the amounts I use were small, there wasn’t a problem. The problem starts if I take 15mg per kg squared of body weight. For me that would mean 900+ msg a day! That’s a lot! h
He has had medical education in the use of marijuana for cancer patients and I really trust him.

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Thank you for sharing the discussion with your doctor about use of CBD oil in conjunction with Prednisone. I had been using CBD and a small part of THC at bedtime in an effort to get a few hours of sleep. When I saw the negative discussion thread I stopped. I have an appointment with the rheumatologist end of the month, I'll report back what he says.

Liked by virginiaj, karinaph

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@dmsbronch

I'm not an expert but its my understanding that both prednisone and CBD inhibit a certain enzyme BUT CBD is a big inhibitor. I believe therefore the corticosteroid side effects (that we all hate) will be worse. Simply put CBD increases the concentration of prednisone in your body. So if prednisone keeps you awake you may be exasperating your problem if you take CBD oil. Maybe if you are on smaller dosages it is okay. I hope someone else will weigh in on your question.

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Appreciate your insights. I’ll check w my MD too.

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I am a recent PMR candidate. I am on a 20mg daily dosage. My recent problem is stiffness and rigidity, no pain or sleepless nights. Some days are better than others but after prednisone/Risedronate (35mg) my whole body is tight. Is this normal? What can I do? Some days I can't get out of a chair. I cannot walk without a walker.

Liked by karinaph

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