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Emotional Roller Coaster and PMR

Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (14)

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@cheraloha

Thank you all for sharing your stories. I am new to this journey and just trying to learn as much as I can. As much as I resisted prednisone, the pain and sleeplessness became intolerable, so I have started on a very small dose. I have begun to feel a minimal amount of relief, but still have a long way to go. For me, the most frustrating part has been navigating the medical system. My primary doctor prescribed the prednisone as I am still waiting to get into a rheumatologist. I've been basically healthy and am very active, so this is a real curve ball. I know God uses pain and suffering for His good purposes and am doing my best to navigate this journey with grace, but it's not easy. The lack of awareness and often well meaning, but ill-advised recommendations from friends also can be challenging. My older brother has a bout with PMR about 7 years ago - he was even hospitalized. The good news is that he is no longer on prednisone nor has he had any recurrence of PMR. This gives me hope as do your stories. Mahalo.

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Replies to "Thank you all for sharing your stories. I am new to this journey and just trying..."

@cheraloha welcome to the PMR journey - it is never a dull moment - but there will be days and weeks when you wish you could change trains or planes or spaceships. You did not mention how much prednisone you are on, but if it is helping you might speak to your doctor or write them a note if you use an electronic portal about upping your dose some. My understanding is if you require more than 20mg a day then it is worth considering that there is something else at play. I had to wait to see my rheumy and my PCP offered to start me on 5mg and go up 1 mg per every 2 weeks to see what dosage was the smallest dosage that worked for me. I did not accept the offer. In retrospect I wish I had. My Rheumy wanted me to start at 40mg/day and I turned that down flat. Long story but I did finally get treated for the PMR. I am now dealing with several other problems associated with my adverse reaction, which was 6, yes 6, years ago.