Prednisone and Pain

Posted by keelin @keelin, Oct 29, 2022

Am I the only one that found the prednisone did NOTHING for the pain? I am 6 months into this nightmare and am slowly taking myself OFF prednisone entirely. I had horrible side effects, and it seems that everyone e else I read about has total relief from pain while on the prednisone. ?
The only thing that helps slightly is an anti inflammatory. But of course I am warned about stroke, heart attack, and kidney problems taking it long term.

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The only thing that helped me was prednisone--40mg a day of it (an unusually high dose). I've been on 40mg for 5 months and have been unable to taper at all despite several tries. My dr said I have a particularly severe case of PMR and that it will be a long road and extremely slow taper. Yes, the side effects are terrible, but the pain is worse. All of which is to ask how much prednisone you were prescribed? Some people need more than others. If your rheumatologists are certain it's PMR, have they discussed increasing the dose of prednisone? It might be worth looking into. Good luck.

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@annettetompkins

Hi, I am now in my 11th month juggling PMR, and like you I progressed steadily from 15 mg to 5 mg each month. No problems along the way or from counting down from 5, 4, and 3 mg. When I dropped to 2 mg a month ago, I had a flare up and then went back to 3 mg and now 4 mg for the next month. Even at 4 mg, I'm having a lot of discomfort, especially in my wrists and hands. Who would imagine that dropping 1 mg could prove such a setback?

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My plan is to go from 6 down to 5 1/2 for 5 days or so then go to 5 for a month. That worked last month when I went from 7 to 6 1/2 fir 5 days and then to 6 for a month. I had one flare up and it is not worth another. I want my Adrenal glands to kick in.

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@loyal

My plan is to go from 6 down to 5 1/2 for 5 days or so then go to 5 for a month. That worked last month when I went from 7 to 6 1/2 fir 5 days and then to 6 for a month. I had one flare up and it is not worth another. I want my Adrenal glands to kick in.

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Good suggestion. My rheumatologist seemed to think that 1/2 a milligram wouldn't make much difference, but when I saw what dropping just one milligram did to my inflammatory markers, I'm not so sure. He did say that lots of his patients had trouble dropping below 5 mg and in fact had one patient who could not give up that last 1 mg for a year. I've stopped worrying about the effects of a low dose of prednisone when I consider the misery of the alternative.

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Pred helps my pain level. I was on 2.5 and had to go to 5mgs to get total relief. Can I ask what side effects you experienced?

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I have found that Prednisone takes away pmr pain however my osteo and more common strains will persist. Keeping a pain log helps me keep track of these different types of pain especially during a taper

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@sharonanng

My primary doctor does not believe that those of us with PMR are required to endure pain. Eating healthy, exercising and managing the risks of prednisone with the help of my primary help me have a reasonably good quality of life while traveling this road.

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When I exercise I experience PEM. Has this been a problem for you? If so, how do you deal with it?

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I was not familiar with PEM (Post-exertional malaise) and had to look it up! I do relatively light workouts. I am a 79 year-old woman who was quite active before PMR (7 months in). I went to a PT for help with how to get my strength back. I am doing stretching exercises, some isometric exercises for my core, and weight-bearing using only 2 lb weights. The PT suggested I not increase the weight as I get stronger, but increase the reps. The routine I have takes about 30 to 45 minutes and targets every muscle group. I also walk every day for at least 20 to 30 minutes. So far I have had no negative effects from exercise. I have found that when I am feeling stiff or have discomfort, if I go for a walk, it takes away all of the stiffness and pain. I do not have the endurance that I had before PMR and I do pace myself. Perhaps you are overdoing the exercise. I highly recommend seeing a PT who can assess your current status and short-term goals.

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@ldingwall88

The only thing that helped me was prednisone--40mg a day of it (an unusually high dose). I've been on 40mg for 5 months and have been unable to taper at all despite several tries. My dr said I have a particularly severe case of PMR and that it will be a long road and extremely slow taper. Yes, the side effects are terrible, but the pain is worse. All of which is to ask how much prednisone you were prescribed? Some people need more than others. If your rheumatologists are certain it's PMR, have they discussed increasing the dose of prednisone? It might be worth looking into. Good luck.

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Won’t increase dosage of prednisone. It took my normally LOW blood pressure to the sky, and the pressure in my eyes were raised to over 30- warning of glaucoma. I was shaking and could not get a spoon to my mouth. I was jittery, anxious, angry, and exhausted.
My pain was also present. Now I take a prescription anti inflammatory and a Tylenol 8 hr arthritis pain killer. Bad for my liver, but prednisone is poison.

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@keelin

Won’t increase dosage of prednisone. It took my normally LOW blood pressure to the sky, and the pressure in my eyes were raised to over 30- warning of glaucoma. I was shaking and could not get a spoon to my mouth. I was jittery, anxious, angry, and exhausted.
My pain was also present. Now I take a prescription anti inflammatory and a Tylenol 8 hr arthritis pain killer. Bad for my liver, but prednisone is poison.

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I truly understand what you are experiencing. I have been on Prednisone starting at 80 mg and down to 14 mg with some ups and downs in milligrams along the way for over 2 years. My blood pressure ( which I have never had a problem) skyrocketed. I ended up at the ER. My doctor said that was not concerned because the blood pressure lowered after some time. He said if it didn’t go down then I had a problem. Over the last couple of weeks, I notice that I get so anxious and jittery. My rheumatologist said that it is definitely from the Prednisone. So, I am slowing down the tapering. I have no idea if I will ever get off of the Prednisone but I will try. Best to you.

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I have found that vigorous exercise (an hour's worth of cardio, strength training, swimming and stretching) (not all at the same time, ha,ha) always lessens, and sometimes eliminates my pain for several hours. Move as much as you can, as often as you can, every day. I feel fortunate that I am able to move and exercise and wish the best to everyone dealing with this difficult disease. I have learned so much from everyone's posts, questions and answers.

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