← Return to PMR - Decreased prednisone and pain returned

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@milld835

The Rheumatologist was as her reviews depicted her. My approach was to go in with an open mind. But...I have never met such a condescending doctor. I told her about the tapering and I felt the Neurologist's schedule of down 1 mg Prednisone every week was a bit aggressive considering my pain returns at 13.75 mg. I tried to tell her my symptoms but she just kept talking over me. When I told her I was tired, shaky and legs were weak, she said "drink more coffee, because fatigue is part of PMR". I only drink one coffee per day. Also when I told her my symptoms began with the first Covid jab and inflammation hit the roof with the second jab, she said, "well maybe you were just meant to get PMR". Possibly, but of everything that does run in my family, PMR, Arthritis or any related auto-immune diseases do not. When I told her initially I could not move my arms downward and back, she asked if I could put them over my head. I always could put them over my head. So she asked me to put my arms over my head, which of course, was no problem, nor is putting them back and down at this stage. Further, she completely changed the tapering schedule and insisted I drop to 12.5 mg immediately. That's today. To stay at that for a month and then down another mg going forward each month. My next "appointment" with her is in 4 months and "we'll see how you're doing on this weaning schedule". I'm like are you kidding me right now? She was an hour late for the appointment, which I could handle. It seemed like she rushed through it, and couldn't wait for me to finish what I was saying, so she interrupted. She did order repeat blood work monthly (a good thing) and also a bone density scan (months of a waitlist). Also a Rx for osteoporosis preventative. So I came out with many unanswered questions. She poo-poo'd the jaw pain and was pretty sure I don't have GCA as jaw pain was on both sides, rather than just one and the CRP was low. I told her about neck pain in the mornings and a bad head ache and she said it's probably pain returning from before the PMR even began, because I had laid off my CBD oil (which I cannot take with Prednisone as it wigs me right out). I think in the 4 months, I will probably shop around for another Rheumatologist, after waiting 5 months to see this one. Very disppointed, although I think the monitoring process and the weaning process at this point are up to me. It is said she is very difficult to reach and does not return calls. Hopefully, I won't have to call her. Took 12.5 mg. Prednisone this morning (down from 14) and this afternoon, I am wiped out. Sorry for the meandering post, but mostly venting. Thanks for your input, opinions and just for being here and listening.

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Replies to "The Rheumatologist was as her reviews depicted her. My approach was to go in with an..."

Hi, milld835,
I can't imagine your disappointment. To wait so long to get in there and then to be treated like that. I agree - you need to shop for a new rheumy again. I did too, and I'm really glad I did. Good luck!

So sorry that on top of everything else, you had a bad experience with your rheumatologist. Mine is so young, I refer to him as Doogie Howser, MD! I initially told him that I had learned so much from this forum, and I think he appreciates that I don't waste his time asking the obvious. At my first appointment with him in February of this year I had tapered down to 9mg of prednisone and am now sitting at 5mg for the next two months. I have all the usual stiffness in my arms, hands and pelvic girdle first thing in the morning, but no pain. Sometimes the need to take naps is a nuisance, but I have learned to embrace it and also to pace myself during the day. After a lifetime (I'm 75) of being a high energy person and not retiring from a very active career until I was 70, I was frustrated at first, but now I count my blessings that PMR is not life threatening, and I will get through this. Good luck with finding a "rheumie" who is more empathetic and will listen to you. In my family we always say that your present doctor is the way she is because she doesn't get enough love!