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Low iron levels and PMR

Polymyalgia Rheumatica (PMR) | Last Active: 5 hours ago | Replies (51)

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Profile picture for rlstonejr @rlstonejr

@boomermeg thanks for the advice and kind words. Been there, done that often over the last 12 yrs. Took 6 months to get diagnosed even after telling pcp that both parents had PMR and I was certain I did too. Finally demanded referral to Rheumy who agreed. I’m definitely googling hepcidin! It took years to get pred down to 8 mgs; spent 3 yrs at 5mgs; currently at 6. But Rheumy keeps asking me to taper down. Every taper ends in a flare and back up higher just to start over

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Replies to "@boomermeg thanks for the advice and kind words. Been there, done that often over the last..."

@rlstonejr
It sounds like such a nightmare for most people when they try to taper down the Prednisone. I just got diagnosed 6 days ago and started 15mg. Not enough to stop the brutal pain or all the symptoms so just went up to 20mg this am. I can't imagine the concern you and everyone must feel about tapering and flares. For myself, I will be full of trepidation for the pain to return. This has been the most brutal pain I've experienced, next to nerve pain. My pain is in my shoulders, upper back, back of neck, upper arms, fingers. Some stiffness in back of thighs too but not a lot of hip pain. The stiffness in legs trying to stand up was a surprise too. Anyway, getting a little better so I know there's hope for relief. Just realizing it's going to be a tightrope act to taper.
I've been reading all through this PMR section of comments re different aspects of PMR and see some people trying different types of meds to taper with, including Hydroxychloriquine, Methotrexate, and a few biologics. I haven't researched them all for side effects nor for use with PMR but I will. Hydroxychloriquine has been around for so many decades and is incredibly safe, in spite of the lies during the pandemic. I hope you can find something that works to help taper without having the flares. It's so difficult to explain this disease, it's symptoms and the severity of the pain to people who don't have it. But those of us who do have it know none of us wants the pain to flare, not to mention the rest of the symptoms. Blessings