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DiscussionThe lowest effective dose, how is it defined?
Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (79)Comment receiving replies
Replies to "Just wondering how long you have actually been on the prednisone and what was your starting..."
"I’ve noticed on this forum that everyone just seems to be on prednisone and no other medication"
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This is true when someone is first diagnosed with PMR. Prednisone is the "first line" treatment for PMR.
After 6 months to a year, doctors start to introduce other medications when someone isn't able to reduce their dose and taper off Prednisone. Not being able to taper off prednisone becomes a big problem because of the side effects when prednisone is taken long term. Even when someone is able to taper off Prednisone initially, people are prone to have relapses of PMR. When a relapse happens, Prednisone is restarted along with other medications to prevent future relapses.
I started with prednisone and no other medications when I was first diagnosed with PMR. During my 12 years on Prednisone my medication count increased to about 15 medictions but most of those other medications were treating Prednisone side effects.
Methotrexate, Leflunomide and several different NSAIDS like ibuprofen, Celebrex, Naproxin and others were used to try to reduce my "steroid burden" as it is sometimes called. Steroid burden is the amount of corticosteroids a person takes over time and the associated health effects. My steroid burden was massive during my 12 years of treatment with prednisone for PMR. I had other autoimmune disorders along with prednisone side effects to contend with in addition to PMR.
A long time ago, sulfasalazine was also tried. It is known as a disease modifying anti-rheumatic drug (DMARD). It was used for one of my other autoimmune conditions but it isn't commonly used for PMR. My rheumatologist wanted to try it for PMR when she was reading my ancient medical records that I had a "good response" to sulfalazine. I told her "my recollection" wasn't what my medical records said. When I told her what I remembered about sulfasalazine, she decided it probably shouldn't be tried again.
https://rheumatology.org/patients/sulfasalazine-azulfidine
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I have been off Prednisone for the last 5 years. I'm now being treated with a biologic DMARD that is working well for me. Biologic DMARDs are another class of medications used to treat inflammatory conditions. They are distinct from conventional DMARDs like methotrexate, leflunomide and others.
Not only did I get off Prednisone --- I have also been able to discontinue about 10 other medications that were treating Prednisone side effects.
I first had PMR 10 years ago at which time my tapering from prednisone took 1-1/2 years, with a flare bump 12 months into it. My rheumatologist was reducing dosage @ 5 mgs.
This was my first flare since that time. I am keeping my Dr informed of my tapering pace which I slowed down after reading your posts. Thank you, everyone! I’m experimenting also with (1) the degree I am strictly adhering to my anti-inflammatory diet, and (2) the amount of exercise I am getting. I have noticed my body seems to be telling me when there’s too much drug in my body—lightheadedness and a buzzy feeling, for example. I have been reducing by 2.5 mg weekly or biweekly. The reduction mentioned of 5.5/6/5.5/6 (etc) was really interesting. So far no kick back (I’m currently on 10mg down from 20 mg over the course of 6 weeks). I am especially going to be mindful once I get down toward 5 mg. That’s where I ran into trouble before (10 years ago). Again, thank you all for your input.
Agreed—we’re each unique and our journeys through this will be too. Yet we can share our experiences and broaden the possibilities for others. You betcha!
Start dose was 15mg in May 2023. 10mths ago after reducing to 6.5/6mg I had my first and only flare, which only settled after going back to 15mg and reducing again. Now reducing to 5.5mg without issue, and I'm hoping not to add more medications with new problems and side effects.
Everyone is different, from dose needed to how long it takes the PMR to resolve, and which medications can be tolerated. I'm on blood thinners for thrombosis, have had heart issues and have latent tuberculosis which means some medications used for PMR can't be taken.
Let us know how you get on with the sulfasalazine. Your experience with it will be of interest to others.