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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)Comment receiving replies
Hello @angelbear4, Welcome to Mayo Clinic Connect. I'm sure it must be frustrating and nerve wracking to be diagnosed and not being able to get the answers about what will be happening. @amptrooper @tinkerbell @jmjlove and others may have some information or suggestions for you.
Since you were only diagnosed 2 months ago and started on 60 mg prednisone dosage and are now at 25 mg, that doesn't seem to be slowly tapering down on the prednisone. I know each of us are different and tapering is normally based on how well the symptoms are controlled when tapering down. You can find more information on Giant Cell Arteritis (sometimes call temporal arteritis) on Mayo Clinic's site here - Giant cell arteritis - Diagnosis and treatment: https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764.
Have you discussed the tapering schedule or your symptoms with your doctor?
Replies to "Hello @angelbear4, Welcome to Mayo Clinic Connect. I'm sure it must be frustrating and nerve wracking..."
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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.