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Have you been able to taper prednisone with long lasting success?
Polymyalgia Rheumatica (PMR) | Last Active: Jun 17, 2023 | Replies (41)Comment receiving replies
@dadcue, Just wanted to say this TOTALLY resonated with me: "He said at first he thought I was a crazy person who wanted prednisone but then he told me that he suspected that I had PMR."
I'm pleasantly surprised your GP even admitted that much to you after you finally got on the right path.
Sadly, I'm used to providers thinking I'm crazy. But when my dad's PMR first showed up, we eventually self-diagnosed it--we knew already he had a strong family history of autoimmune conditions, and his sister is an internist who also believed it was PMR (but she lives out of state). Yet when we took him to his PCP's immediate care clinic to see one of the MDs on call to review his labs (I had to do the communication because my dad was in no shape to be able to explain)--it was me, and both of my parents. And I honestly wanted to melt into the floor because of the way the person at the registration desk, and then the nurse they sent out to talk to us looked at us like we were hysterics freaking out about lab values. Other than the obvious-to-us PMR symptoms, my dad at that point had an ESR of 120. Even if it wasn't PMR, we knew something needed to be done. The MD on call (the whole reason we went there) refused to see my dad, and they told us if we really believed it was that serious, that we should go to the ER.
I felt so bad for my parents because we're an immigrant family, they don't love seeking out healthcare (but then, who does?) and I had encouraged them to go, and I drove them to the clinic, only for all of us to end up feeling humiliated.
His PCP never apologized, but after two more phone calls with his nurse and my mom asking the nurse to ask the doctor to please look up PMR, then we got the RX for prednisone and I immediately started looking for a rheumatologist for him. Things are way better with a good rheumatologist; thankfully we found a good one on the first try, phew.
Replies to "@dadcue, Just wanted to say this TOTALLY resonated with me: "He said at first he thought..."
Whew! What a terrible experience. Apparently, there is a lot of ignorance among PCPs and other non-specialists about PMR. It’s shameful that you were treated so poorly and that the PCP never apologized. I’m lucky that my PCP went after it like a tiger when I first had symptoms, eliminated other things, diagnosed it, and sent me to a rheumatologist.
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I completely understand how you feel.
When reactive arthritis was diagnosed 30 years ago, I didn't get an immediate diagnosis. I made a couple of doctor visits first. The back pain was brushed off as "normal pain" and a new mattress was the first recommendation along with taking ibuprofen. I knew it wasn't the mattress but I took ibuprofen.
The strange thing about the back pain was that it got worse at night after I fell asleep. The pain would wake me up and I needed to stay awake for the pain to improve. I didn't have too much pain during the day at my doctor visit.
I made a second doctor appointment and claimed my bedroom had become a torture chamber. I don't think the doctor took me seriously and only recommended more ibuprofen which I think caused some serious diarrhea.
My third visit was to an emergency room. I thought I had a stroke or something after I retched my guts up for an hour. There was nothing at all in my stomach so I don't know what the retching was all about.
After I retched, my left eye was beet red and my right eye was "fixed and dilated." I thought surely I had a stroke. It turned out that my right pupil was responding normally to retching but my left eye didn't dilate as it should have. The ER doctor thought it was strange that my left pupil wouldn't dilate at all.
I told the emergency room doctor how crazy it all was. I was worried about a stroke more than anything. The doctor downplayed the stroke idea because I was too coherent. He did note how red my left eye was. He got some labs which proved that I was seriously dehydrated. They stabilized me in the emergency room with IV fluids but I wasn't hospitalized. That made me wonder what it took to get admitted to a hospital. I thought being hospitalized was warranted.
The emergency room doctor thought I would survive overnight. He made an urgent appointment to an internal medicine doctor for 8 a.m. in the morning. It was already after midnight so I didn't have to wait long. I considered camping out in the emergency room because I wasn't so sure that I would survive until morning.
I was sent home with narcotics and Lomotil to stop the diarrhea. I didn't sleep that night because of excruciating back pain. My red eye got worse overnight. I drove myself back to the hospital but that was dangerous because the drive was heading east at sunrise and my left eye was extremely photophobic and very painful. I drove with only one eye open.
The internal medicine doctor prioritized my eye first and sent me to an ophthalmologist who diagnosed uveitis.
I think it was the uveitis and being HLA-B27 positive that gave me credibility, with the medical doctors. Otherwise, I doubt they would have believed me. I can't blame them for that because I had a hard time believing it myself. If someone had an identical experience as I did and told me about it --- I wouldn't believe it either.
I'm a self-deprecating sort of person. I have good relationships with most of my health care providers. However, there have been a few doctors who I have a hard time with being forgiving.