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@johnnyman

Hi, I've been diagnosed with polymyalgia rheumatica. I'm on 30 mg of prednisone daily. Doctor informed me that the dose will be lowered in the future, but I'll probably stay on it for a long time. Without it, I'm in very much pain throughout my entire body. Should I be worried? I've been on prednisone two months so far.

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Replies to "Hi, I've been diagnosed with polymyalgia rheumatica. I'm on 30 mg of prednisone daily. Doctor informed..."

Hi @johnnyman Anytime you’re taking prednisone it does have an impact on the body. It lowers the inflammatory response your immune system launches to fight injury or infections and reduces pain and swelling. In doing so it can also impact your immunity function. This then lowers your ability to fight infections.
So while prednisone is a wonder drug to help diminish your PR symptoms you do need to be a little more cautious to avoid illnesses such as covid or the flu. Just use common sense and avoid large groups of people indoors; Following Covid protocol is a good idea. Wear a mask when you’re in public settings, wash hands more frequently, that type of thing.
Does this help answer your concerns?

Hi @johnnyman, I would like to add my welcome to Connect along with @loribmt and others. Your symptoms sound very much like my first experience with PMR. I was started on 20 mg of prednisone and it took away all of my pain for the day and night until the next day. My first occurrence of PMR lasted 3-1/2 years until I was finally able to taper off of prednisone. I believe the average length of time for an occurrence of PMR lasts from 1 to 5 years but each of us are different.

You might find the following discussion helpful:
-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

My rheumatologist recommended keeping a daily log of my dose of prednisone and my level of pain when I got up in the morning. He also recommended listening to my body when I started tapering down on prednisone and to taper according to how I feel. If my pain level was above a 2 when it was time to taper to the next lower level, I did a few more days before trying to go down. If the pain was worse, I bumped the dose up half of the previous taper to try and keep from going back all the way.

Do you keep a daily log?

Try not to worry too much about it.

I'm just curious about when in the future your doctor will want you to lower your prednisone dose. I would say that 30 mg is a moderate to high dose for PMR. I started at 40 mg so that was considered a high dose. The dose you need depends on the person and what is being treated.

I had another autoimmune condition where my ophthalmologist had no qualms about 60 mg and even pushed it up to 100 mg "if I could tolerate that dose." The amount you can tolerate should be patient specific. There are some people who don't tolerate 10mg very well.

It is important to decrease your dose as soon as possible. Your pain level will largely determine how soon you can decrease your dose.

My other question is how long does your doctor say a "long time" is? A year or two might be okay but PMR doesn't always go away in a year or two like it is supposed to.

I took prednisone for 12 years for PMR before my doctor decided it was too long. He said I was too young to take prednisone for the rest of my life.

You may develop prednisone induced problems from "long term" prednisone use that you need to be aware of. Unfortunately, there aren't many proven alternatives to prednisone for the treatment of PMR. I had to exhaust all other options before my rheumatologist could get something else approved that finally worked for me. When that medication was approved, I was off prednisone in less than a year.

You never know what else may work for you. Just be aware that it is important to get off prednisone as soon as possible. No two people are the same and treated exactly the same.

Prednisone isn't a benign medication when it is taken "long term." Once again, what is considered too long for some people isn't too long for other people. Some people can't tolerate any prednisone for more than a few weeks. Having pain isn't well tolerated either so you are forced to choose between pain or prednisone. Having "no pain" isn't a realistic expectation in my opinion.

Good luck with having PMR. With some luck the pain might stop relatively soon.