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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

Hi John....I have discussed the tapering off and am in contact with my family dr. regularly. However, I have a feeling that my dr. is referring to medical books or Dr. Google for information as he has not treated this before. He handed me a copy of the tapering off of prednisone that he wrote up and I will be off of prednisone in Dec./21 if tapering continues okay. When I went down to 40mg., the symptoms started to come back within 36 hours and I had to go back to 50 mg. for a week and then 45 mg. I had a bad episode 2 weeks ago and had to go to the ER. I was getting chest pains and pain around to the back, plus it really hurt to take a breath in. I must admit I was scared and was crying in the hospital. The nurse helped me relax by assuring me that with all that's been happening, it is not unexpected that I would break down. 🙂 The prednisone spiked my blood pressure and blood sugar levels, which were both checked the week before and were okay. They brought everything back where it should be and I went home. This last few days, at 25 mg., I've been having a bit of discomfort with the swelling around my neck that stays and the pressure, not really pain, at both temples. Today is a debate with my husband about going to the ER and getting it checked or waiting until I have a phone consult with my doctor tomorrow...
Thank you so much for answering my post as a volunteer mentor as I really appreciate having someone to talk with that knows what they are talking about.

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Replies to "Hi John....I have discussed the tapering off and am in contact with my family dr. regularly...."

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