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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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@mariannj

Diagnosed with biopsy end of September following 2 weeks of headache, jaw claudification and finally visual distortion. Since Mom and sister both had it I knew to immediately get help so the very next day I was receiving 1000 IV prednisone for three days. Biopsy was on day 2. Vision was saved and headache disappeared. Next I began with oral 80 mg and eventually tapered to 10 currently. I have extreme Cushing syndrome so doctor is trying to get me down to a lower dose. I also am an outlier, meaning I am out of the normal sphere of patients with my side effects. I was 79 when diagnosed, now 80. Yea! On octogenarian! At my worst I needed a walker and could not rise out of chair or off toilet without assistance. I had grab bars installed in bathrooms and shower. Since I live alone it was an almost insurmountable task but I was blessed to keep my vision and would suffer with all the side effects to keep it. My treatment is through Mayo in Phoenix. Some of these side effects have disappeared and some still linger. I am on a blood thinner for my heart and am taking calcium, Nexium and assorted supplements per doctor's recommendation. I had bone density in the beginning and follow with thyroid blood checks, as well as everything else that Mayo checks with each blood draw before tapering..

My Prednisone Side Effects:

Insomnia
Creative mania
Physical mania
Fatigue
Auditory hallucinations (loved the music)
Neuropathy
Myopathy
Hair loss on head
Eyelash loss
Cushing syndrome
Super sensitive painful skin
Thin skin
Heart Palpitations
Tachycardia
Irregular heart rhythm
Shortness of breath
Night sweats
Day sweats
Trouble concentrating
Extreme thirst
Funny taste to all food
Difficulty swallowing from lumps on neck
Sores on tongue and gums
Unsteady gait
Balance issues
Swollen ankles
Joint pain in hip
Lower back pain (probably due to support huge stomach)
Skin splitting open
Hunger ALL the time
Bruises everywhere
Heartburn

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Replies to "Diagnosed with biopsy end of September following 2 weeks of headache, jaw claudification and finally visual..."

@mariannej We have a very similar story, except I lost the vision in my right eye at the beginning of my GCA journey in 2019. You're the only one I've heard of who had the 3 day I.V. 1000 Prednisone like I did. I suffered a stroke on Day 2, and a second stroke three months later. Was in a wheelchair for a long time, had your same ambulatory difficulties, and was just SO sick. Was prescribed the newer injection drug Actemra in November 2020, along with tapering Prednisone, but quickly taken off both when my WBC and neutrophils dropped drastically. Terrible six-week withdrawal followed. Now only on weekly Actemra injections and gradually improving. Began walking outdoors a month ago, with my trusty walker, and today broke my record at 1.2 miles! So very happy about that.
I hope you are having some easier days.
Warm regards,
Laurie