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Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Polymyalgia Rheumatica (PMR) | Last Active: Jul 7 8:52am | Replies (353)
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@johnbishop

Hello @jhinia, I would like to add my welcome to Connect along with @654321 @tinkerbell and others. I also have PMR but it is currently in remission. Do you currently take your prednisone dosage all at once in the morning? Can you talk with your doctor about possibly splitting the dosage between morning and evening to see if that might help?

Here is another discussion you might be interested in reading through.

> Groups > Autoimmune Diseases > Autoimmune Diseases and Fatigue
-- https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/

Have you been tested for sleep apnea? I found out last year that was causing a lot of my sleep issues.
-- https://www.mayoclinic.org/diseases-conditions/sleep-apnea/diagnosis-treatment/drc-20377636

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jhinia | @jhinia | May 19, 2019

Thank you @johnbishop @tinkerbell and @654321 for your response. It really helps to have others with experience to confide in.
The fatigue discussion is helpful and apnea certainly is a possibility. I sometimes wake myself up choking and gagging. It almost always happens when I am sleeping on my back. It was better after loosing 25 pounds last summer so the 10 pounds I just gained on Prednisone will only make it worse again. I normally sleep on my right side. I don't feel like I am waking up abruptly - I just slowly wake and think ahhhh that was a good sleep. Then I look at the clock and realize it was one hour of sleep.

Also good point about splitting the dose between morning and evening. My rheumatologist offered that solution when I met with him but I didn't think much of it because I was taking them in the evening at that point. I appreciate the reminder and will try splitting the dose this week.

My symptoms were pretty classic and luckily my primary physician had just had another patient of his diagnosed with GCA so he was insistent that I have the biopsy twice even though the vascular surgeon was pretty sure it would come back negative.

It started with what I thought was a sinus infection and discomfort in my left eye. Headaches were common both in the temple area and neck/shoulders. Then the jaw pain started. Initially it was just pain when opening my mouth wide to take a bite of food but about a day after that started the jaw pain was intense. 3 Advil every 4 hours would provide about 2 hours of minimal relief. Worst pain I ever had. I was incredibly fatigued. I spent the better part of 3 weekends just sleeping on the couch or in bed. The weeks in between weren't too great either. I ran fevers in the night up to 101 degrees. I would often wake up totally wet from sweat.

Throughout my life I have had ocular migraines. I have one about every year or two and the visual impact lasts about 15 minutes. At the peak of my pain with GCA however I had one that lasted about 30 minutes. I waited for it to end and then went home (10 minute drive). When I got home another one started up. I went to bed and slept through that one. Had I known about GCA and blindness at that point I would have been too scared to sleep.

Thanks again for the support.

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