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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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@angelbear4

Talked to my GP today because I have had so many symptoms coming back after lowering the prednisone to 25mg. He wants me back on 30mg for a week and then try 25 again. He is also arranging for me to see a rheumatologist. My one question to you is if you know what is the best thing to do for all the swelling around my neck...front & back. I also have it at the base of my skull and it's very uncomfortable. I am guessing it's a side affect of the prednisone but it is giving me issues with sleeping .... Thanks John

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Replies to "Talked to my GP today because I have had so many symptoms coming back after lowering..."

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.

@angelbear4, The swelling around the neck and face is one of the possible side effects with prednisone. I think it should get better when you are able to taper the prednisone dosage to 10 mg or less. Here is some information on the side effect - Facial Swelling Caused by Prednisone: https://www.verywellhealth.com/prednisone-facial-mooning-1942983

With your upcoming appointment with a rheumatologist, have you considered making a list of questions to ask the doctor? The Patient Revolution website has some question cards that you can print out to plan your conversation with the doctor/rheumatologist:
https://patientrevolution.org/visit-tools