Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

This is my first post so I apologize if I am in completely the wrong place or if my question has been answered a million times before. I searched for a Giant Cell Arteritis group and I searched each of the 14 pages in this thread for "sleep" but did not find much discussion relative to my concern. So here goes. Thanks for your patience.

In April after the second biopsy I was diagnosed with GCA. I have was on 60mg Prednisone from early April until a week ago when they dropped it to 50mg.
My biggest problem is insomnia. It may be slightly better at 50mg than it was at 60mg but I'm still really struggling to sleep.

I go to bed dead tired and fall right asleep. I then sleep one or two hours and I wake up. Usually I can go back to sleep at that point and sleep another hour maybe two before I wake up again. The third time I wake up (now about 2:30am) I get up and take a chewable melatonin. Back to bed and after a little tossing and turning I can usually zonk out for another hour. The 3:30 wake up is the worst. I may take another melatonin and try to get back to sleep but I rarely fall back to sleep at this point.

I never had any trouble sleeping before the GCA and Prednisone. I could sleep 7 or 8 hours straight and wake up feeling fine. Now 4 or 5 hours sleep in a night with only two interruptions is a good night sleep. I'm trying to finish my last three months of work before retirement and I feel like I'm just dragging myself through the day and trying not to fall asleep at my desk. I had a productive and enjoyable career and I really hate the feeling that I'm limping too the finish line.

Can anyone point me to discussions about dealing with Prednisone induced insomnia? I'm not finding much on the web about it. The only advice I have been given is "take it in the morning". Thanks.

@jhinia - Hi from Tinkerbell. I finished my taper for GCA last October. I had a terrible problem sleeping from 60 mg. To 20 mg. I was told to try lavender oil on my feet. My feet smelled good but it did not help with the insomnia. I went down 10 mg every 2 weeks so you just need to hang in there. Also, I had never had problems sleeping until I got on the Prednisone. It seems to be a common problem. If you have any other questions I will be happy to try to answer your questions. I was on Prednisone 1 1/2 years.

This is my first post so I apologize if I am in completely the wrong place or if my question has been answered a million times before. I searched for a Giant Cell Arteritis group and I searched each of the 14 pages in this thread for "sleep" but did not find much discussion relative to my concern. So here goes. Thanks for your patience.

In April after the second biopsy I was diagnosed with GCA. I have was on 60mg Prednisone from early April until a week ago when they dropped it to 50mg.
My biggest problem is insomnia. It may be slightly better at 50mg than it was at 60mg but I'm still really struggling to sleep.

I go to bed dead tired and fall right asleep. I then sleep one or two hours and I wake up. Usually I can go back to sleep at that point and sleep another hour maybe two before I wake up again. The third time I wake up (now about 2:30am) I get up and take a chewable melatonin. Back to bed and after a little tossing and turning I can usually zonk out for another hour. The 3:30 wake up is the worst. I may take another melatonin and try to get back to sleep but I rarely fall back to sleep at this point.

I never had any trouble sleeping before the GCA and Prednisone. I could sleep 7 or 8 hours straight and wake up feeling fine. Now 4 or 5 hours sleep in a night with only two interruptions is a good night sleep. I'm trying to finish my last three months of work before retirement and I feel like I'm just dragging myself through the day and trying not to fall asleep at my desk. I had a productive and enjoyable career and I really hate the feeling that I'm limping too the finish line.

Can anyone point me to discussions about dealing with Prednisone induced insomnia? I'm not finding much on the web about it. The only advice I have been given is "take it in the morning". Thanks.

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

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.

I was not too happy about the 2nd biopsy. They did it one week after the first one and the thought of going through that again was pretty depressing. The first one took 7 hours from check in to check out. Even though it is done under local and sedation they prep you like you are going to be under general anesthesia. At least that is how they do it here.

@tinkerbell your dosing info and others I have read have me concerned about getting that fine tuned. Right now I'm just happy to be at 50mg instead of 60mg and I am looking forward to going to 40mg this Friday. I can't imagine being under 20mg and adjusting it one mg at a time. I guess we do what we have to do.

Looking for input on Giant Cell or Temporal Arteritis. Was diagnosed finally at the beginning of Sept. and am on Prednisone. I still feel awful! 24/7 pounding headache, fatigue, jaw discomfort and neck pain. Will be travelling very soon and am concerned.