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DiscussionThe pros and cons of Prednisone
Polymyalgia Rheumatica (PMR) | Last Active: Jun 14 10:13am | Replies (34)Comment receiving replies
I certainly understand how you feel. The real debate about the pros and cons of Prednisone must be separated into "short term" use versus "long term" use. Prednisone is great in the short term so the pros outweigh the cons. Long term use is the opposite I believe --- the cons outweigh the pros.
I can tell a similar story about reactive arthritis ... diagnosed in my early 30's. Sulfasalazine (Azulfidine) was prescribed to me at the time. I also had uveitis to go along with reactive arthritis. My ophthalmologist preferred massive amounts of prednisone so I wouldn't end up being blind. My recurrent flares of reactive arthritis with uveitis were yearly if not twice yearly events for 15-20 years.
To make matters worse, trigeminal neuralgia was also diagnosed a long time ago. It had nothing to do with reactive arthritis. It was neuropathic pain but prednisone worked reasonably well for trigeminal neuralgia too.
I mistakenly thought I could "control my pain" without the help from any doctors as long as I had enough prednisone. I had a massive stockpile of prednisone because my ophthalmologist didn't want me to run out of Prednisone whenever uveitis flared up.
Life was relatively good until PMR was diagnosed when I was 52. I started seeing a rheumatologist. She was sympathetic and said I needed to take prednisone on a "long term basis" instead of “short term prednisone bursts” as I called them, I could always take a high dose of prednisone followed by a fast taper and my reactive arthritis, uveitis and trigeminal neuralgia problems were temporarily solved. After PMR was diagnosed my Prednisone bursts didn't work anymore.
After PMR was diagnosed, it seemed like my life depended on prednisone. So many things happened ... it would be impossible to explain everything. I started showing up in the emergency room and being hospitalized. Prednisone was sometimes blamed but my primary care doctor always said things were "multifactorial."
My rheumatologist also wanted me off Prednisone. I told my rheumatologist that prednisone "protected me" from pain. My rheumatologist knew prednisone was also "putting me at risk" of other things. Those other things might be worse than PMR. My rheumatologist always hoped that my pain could be controlled with something else besides prednisone.
After 35 years, my cumulative dose of Prednisone can only be described as "massive." In my medical records, it says "decades of Prednisone use" at the top. That notation is followed by an extensive list of "other medical problems" which were added after my PMR and subsequent long term Prednisone use.
I have mixed feelings about Prednisone. I wanted to taper off Prednisone after PMR was diagnosed but I didn't know how. There weren't any magic tapering schemes. I was at the stage where I thought prednisone for the rest of my life might be a good idea. My rheumatologist said I was too young and too healthy to take Prednisone for the rest of my life. I felt the opposite --- I felt old, unhealthy and I didn't think I would be alive much longer.
About this time, my rheumatologist suggested Actemra to me if I was willing to try it. I didn’t need any encouragement to take more prednisone but that was advise I got on another forum from people not qualified to give medical advice. They were “professional patients” just like me. Prednisone had already ruled my life for more than 35 years already so I almost turned down Actemra. What is the harm of a few more years of Prednisone? It happened by chance but someone who had an adrenal crisis explained to me the harm.
I’m glad I tried Actemra … I got off prednisone completely two years later. My quality of life has improved immensely. My medication list for my other problems is shrinking as well as my emergency room visits. I haven't needed to be hospitalized since getting off prednisone.
I still have some problems which need to be addressed. However, prednisone isn't putting me at greater risk of anything. I have surgery pending for severe spinal stenosis. Ten years ago, the surgeon said I was a poor surgical risk because of prednisone. Now I can have that surgery whenever I'm ready.
Replies to "I certainly understand how you feel. The real debate about the pros and cons of Prednisone..."
I am now on dexamethasone 3 mg. And at 82 I am not going to worry about long term etc. I feel good and functional and will go down to 2 mg as long as I remain functioning 3 1/2 years with pmr. I am opting for max function. Any views?