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Trying to determine long term prednisone versus other prescriptions
Polymyalgia Rheumatica (PMR) | Last Active: Aug 3, 2023 | Replies (33)Comment receiving replies
It’s tough sometimes standing in between different specialists with different perspectives, plus taking into account your values and quality of life.
Like the others have said, we can’t exactly tell you what to do…and in theory your physicians would know hear your circumstances (but even I know that’s not always true…my rheumatologist and care team typically says I know my body best).
Anyway, I’d personally be more inclined to put more weight on my rheumatologist’s opinion because they’re very accustomed to managing long-term prednisone use and should be the expert in the ideal scenario of managing PMR. And many people with rheumatological conditions also have co-occurring conditions, so considering multiple conditions shouldn’t be a foreign concept (again, ideally). It’s understandable your endocrinologist has concerns. Still, I take Humira for my inflammatory arthritis and if for example my neurologist or other specialist suggested I switch to a different medication without consulting my rheumatologist about their concerns, that would stick out as odd to me. Maybe it’s just me but I kinda feel like they need to either stay in their lane or share the lane lol.
But the thing that also strikes me as odd is that Celebrex isn’t exactly a benign medication either? Long term NSAID use also has risks. I believe it has its own black box warning. I tried Celebrex many moons ago for my inflammatory arthritis and it didn’t make a dent in my pain; it wasn’t strong enough to counter the inflammation and I couldn’t take it in higher doses because I only have one kidney (long term NSAID use is discouraged with one kidney). There is probably a reason it’s not indicated for long term management of PMR, not to say that it wouldn’t help. But it seems odd to me when there’s general agreement about medical management of PMR to turn to something outside of those recommendations if the first line treatments haven’t been exhausted yet.
My dad’s care team said that long term use of prednisone for quality of life, as long as the rest of his risk factors are monitored is not so high risk. There’s so much caution/fear around prednisone (rightfully so) that I think other patients/providers aren’t as accustomed to the idea that there are conditions and situations where long-term use of prednisone is indicated.
That said, if it is important to you to get off the prednisone for personal or for health reasons, do you think you could talk to your rheumatologist about the other biologic medications that have recently been approved for PMR? Is it possible those could work for you?
I think in the end, it depends on what’s more important to you, which path you feel most comfortable with considering the side effects and short and long-term risks, and maximizes your quality of life. Hopefully your providers will support your decision and can help you understand all the options. I know that’s easier said than done. But it’s great your being so intentional about how to move forward.
Replies to "It’s tough sometimes standing in between different specialists with different perspectives, plus taking into account your..."
Having multiple conditions isn't ideal under any circumstance. When Actemra worked so well for PMR, I was able to taper to zero prednisone for the first time in 12 years.
Within a couple of weeks, of being off prednisone, I had a massive flare of uveitis. My long time ophthalmologist of 30 years didn't have the heart to start prednisone again. He just sat there without saying anything. I suggested 60 mg of prednisone and my ophthalmologist said it sounded about right but I needed to see a uveitis specialist.
The uveitis specialist wanted me on Humira and said that Actemra wasn't optimal treatment for uveitis. The uveitis specialist consulted my rheumatologist who agreed that the eye inflammation needed to be controlled. My rheumatologist conceded that Actemra wasn't likely to add anything to 60 mg of prednisone so he stopped Actemra. The uveitis specialist started me on Humira.
Humira might have worked for uveitis but my uveitis has always been "prednisone responsive" so I'm not sure that Humira helped that much. The uveitis specialist insisted I stay on Humira to prevent uveitis from happening again.
As I tapered my prednisone dose back to 15 mg, I started feeling pain again. I informed my rheumatologist about the pain. My rheumatologist said that I needed to give Humira a chance to work. He said it would take at least 3 months to know if Humira was going to work from a rheumatology perspective. I stayed on Humira for 4 months and the pain only got worse. I couldn't go any lower than 15 mg of prednisone.
I went back to my rheumatologist and we had a heart to heart talk about multiple autoimmune conditions. My rheumatologist said it would be impossible to adequately treat everything that was going on. He asked me which biologic I wanted because I couldn't take both of them. I chose Actemra.
The uveitis specialist wasn't pleased and said it was only a matter of time before I had another flare of uveitis if I didn't take Humira.. I said if uveitis happened again then I would take 60 mg of prednisone again if that was needed.
When Actemra was restarted for the second time, I was able to taper off prednisone again. From 15 mg to zero in 2 months after restarting Actemra.
The first time I was on Actemra, It took me about 9 months to taper off prednisone. An endocrinologist told me when it might be safe to discontinue prednisone the first time because of adrenal insufficiency.
My rheumatologis said I should follow the endocrinologist's instructions the second time too. The endocrinoligist offered her advise. She said miraculously, my cortisol level was still "adequate" so I could go ahead and stop prednisone the second time. I went from 60 mg of prednisone to zero in 6 months the second time. My endocrinologist never wants me to take prednisone again and says prednisone causes too many endocrine problems.
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Though not directed to me, thank you for your thoughtful and informative post. I always enjoy reading what you put forth.