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Polymyalgia Rheumatica (PMR) | Last Active: Aug 29 12:15pm | Replies (26)

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@yogabonnie

I am on 1.5mg of prednisone.. 8 years now of having tapered from 25 and a couple flares. Was between 5 and 2.5 for most of that time. I now went to a Rheumy who said PMR only lasts 1 year. no more. (so right away I didn't care so much for her.) She is suggesting Sulfamonide (think that is the name.) My question. Is 1.5mg. or 1mg of prednisone if it keeps your feeling ok so very bad? worse than these other drugs. Sulfamonide, Methotrexate, aceterma or for that matter 2500 of Tylenol every day (which I am taking because of all the aches and pains at 1.5. Thanks!

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Replies to "I am on 1.5mg of prednisone.. 8 years now of having tapered from 25 and a..."

I think most “veterans” on here would agree that you do not continue prednisone simply because it makes you feel better. That would seem to be the “addiction” that my rheumy warned me about at the beginning of my (now successful) treatment for PMR after ruling out most other possible causes of my condition.
There are many conditions besides PMR that can be causing your pain, and which should probably not be treated with prednisone.
Pain is a symptom, not a disease, and all pain is not PMR pain.
From what you have related here, I would suggest that it is most important that you pursue a diagnosis, and then decide on an appropriate treatment. Your rheumy is not crazy.
Best of luck.

You can probably find a rheumatologist that would be happy to prescribe low dose Prednisone to you for the rest of your life. My rheumatologist actually said, "if I only needed 3 mg or less there wouldn't be too much concern." My rheumatologist said this prior to wanting me to try Actemra.

Since I was on Prednisone doses in excess of 10 mg daily for 12 years, my rheumatologist's comment about not being concerned wasn't pertinent to me. I had to rectify "quality of life" with my strong desire to get off Prednisone. That wasn't that difficult for me to do because Prednisone wasn't my ticket to a quality life. When I read all the obvious Prednisone side effects people have on forums like this one it makes me wonder how anyone wants to take Prednisone for more than a couple of years.

My personal belief is Prednisone is a good "short term" medication for PMR. The consistent thing I read in the medical literature is the "long term dependence" on Prednisone isn't good no matter what disorder is being treated. More and more, the medical research is saying even low dose Prednisone isn't good for the long term.

Dependence isn't an addiction when you realize the body depends on cortisol produced by the adrenals to regulate inflammation. When considering the adrenal suppression that occurs when we take Prednisone there is a choice we need to make. Either we allow our adrenals to function as they should or we continue to take Prednisone as a cortisol substitute.

The real dilemma is finding an alternative to Prednisone to treat PMR. People with PMR need to advocate for alternatives to prednisone rather than promote the "quality of life" of long term Prednisone use. Fortunately, I agreed to try Actemra. My rheumatologist and I both agree I'm "better off" being on a monthly infusion of Actemra and not taking Prednisone for the rest of my life.

When Prednisone was initiated for PMR, I was told it would be for a year or two and it ended up being 12 years. From my long term experience with prednisone, I have a difficult time telling anyone they should do the same. My quality of life didn't improve until after an alternative to Prednisone was found.

Is it true that PMR only last one year? I have had it off and one for 30 years and each time prednisone was immediate relief. As I noted in previous posts I have been on and off prednisone maybe 20 times. Currently my rheumatologist doesn't think I have PMR. He thinks it is spondylo arthritis. Although I am drugs for arthritis the most important drug I take is Tylenol 1000 mg 3X/d. I went on that by accident when I had a tooth extracted and started taking Tylenol. It helped my PMR / arthritic pain a lot.