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Adjusting to life with temporal arteritis

Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)
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@delilah2020

I was diagnosed June of 2020 along with an older case of lyme disease showing up on labs. I started at 20mg prednisone now down to 12mg. Go has me decreasing 1 mg a month. Also on second round of strong antibiotic for the lyme.

I have humps of what I call fat along my lower neck by front clavicals. Doctors did CT scan on lungs. All clear. Next week CT of stomach just to rule out any kind of lymp node leakage involvment causing swelling. Pretty sure it us just prednisone fat from all the steroids. No pain in area. John Hopkins has a good explanation of steroid causes and I appear to be trying out for a body builder competition. It did mention that swelling should go down when you get under 10mg prednisone. Hope they are right.

I also have COPD and have been combating bronchitis for three weeks now. No covid . Good luck @anglebear4.

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Replies to "I was diagnosed June of 2020 along with an older case of lyme disease showing up..."
John, Volunteer Mentor | @johnbishop | Nov 10, 2020

Hello @delilah2020, Welcome to Mayo Clinic Connect. Thanks for sharing your experience. I think you are right about the facial swelling and the prednisone dosage. I had a little of the "moon face" with my first bout with PMR while taking prednisone. It did seem better for me when I got below 10 mg.

Are you able to let us know if your upcoming CT rules out other causes for the swelling?

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angelbear4 | @angelbear4 | Nov 22, 2020

Hi Delilah...thank you for your words of encouragement...The humps are sticking with me for a while I guess as I am still at 25mg of prednisone. When I attempt to lower the dosage under my doctor's guidance, symptoms come back and I have to go back up for an extra week....Tomorrow I will try 20 mg. and see how that goes. The rheumatologist called me on Friday and is going to try and fit me in this coming week. He cannot understand why he was not contacted sooner but I told him that my family doctor was making the decisions as to the course of action. Hopefully, he can give me some new insight on things. Do you also still have over whelming exhaustion? Whenever I do anything like a bit of baking, a quick trip to the store or even walking up & down a flight of stairs, I sweat to the point of my hair being wet. I think the is my most upsetting part of this disease...Hang in there and we will get thru this...

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