Inverse relation between sleep and PMR symptoms
I am tapering prednisone, currently at 10 or 11 mg. I observe that when I sleep poorly (up for part of the night, or rising at 4:30) my PMR pain and stiffness is reduced in the morning. If I only get up once or twice for the bathroom but sleep OK, it will be a bad morning: more discomfort, more fatigue. (The sleep issues existed before the PMR and prednisone.) Is this common? Symptoms increase with more overnight inactivity?
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I'm curious - do you take your prednisone at the same time every day, or does it vary by the time you get up? The body releases cytokines (inflammatory substances) during the night around 4 am. So if you take your prednisone early in the morning close to the time the cytokines are released, you might get better relief from your PMR for that day.
Sleeping poorly is a problem. Taking Prednisone won't help your circadian rhythm. For PMR symptoms to increase with more overnight inactivity is typical I would think. Since your sleep issues existed before PMR and Prednisone it is possible that your sleep / wake cycle was already dysfunctional and probably is a separate problem.
PMR symptoms of pain and stiffness are well known to be worse in the morning or after periods of inactivity. My pain and stiffness was so severe it woke me up in the early hours of the morning usually at 3 a.m. What worked for me was to take a small portion of my daily dose of Prednisone in the evening before going to bed. I was able to sleep the entire night without any pain. Getting a full 8 hours of uninterrupted sleep was good for me. I had a great day when I took the rest of my daily Prednisone dose in the morning when I woke up.
The combination of pre-existing sleep issues, the disruptive effects of prednisone, and PMR pain creates a complicated problem. I think we need more information.
I split the dose of prednisone, breakfast and dinner, 7:30am and 6:30pm more or less, pretty consistent. The sleep issues are pre-existing, and not particularly due to the prednisone though I suspect it doesn't help. I don't have problems with overnight pain. It's not surprising that PMR symptoms can be worse on rising, but I am struck that both the soreness and the extreme fatigue (which I see as a PMR symptom) are less likely to occur if the sleep is disrupted. Puzzling to me.
"I am struck that both the soreness and the extreme fatigue (which I see as a PMR symptom) are less likely to occur if the sleep is disrupted. Puzzling to me."
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This is puzzling to me too.
Extreme fatigue might be a problem with your cortisol level. I had a problem with adrenal insufficiency when I tried to taper off Prednisone. The fatigue was "overwhelming" until my cortisol level improved. The overwhelming fatigue improved as my cortisol level improved a few months after tapering off Prednisone.
Cortisol also plays a role in your sleep/wake cycle. Cortisol levels vary on a circadian rhythm and are lowest during the night and peak in the morning to promote wakefulness. A low cortisol level at night allows inflammation to increase at night because more cortisol is needed to regulate inflammation. A disrupted sleep/wake cycle can also cause more inflammtion.
Hormones are complicated but the following link attempts to explain the circadian rhythm of cortisol.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8813037/
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If your cortisol rhythm is disrupted then your sleep cycle is disrupted. Disruption of this natural rhythm because of stress, poor sleep hygiene, or shift work, can lead to disrupted sleep, elevated inflammation, and difficulty falling asleep and staying asleep.
@dadcue
I found that magnesium glycinate supplements at night helps a lot to promote better sleep. I also take amiptryptiline at night. Also helps for muscle spasms and neuropathy. Take it 12 hours before you want to wake up to prevent drowsiness during the day.
@martha13
I no longer have too many sleep problems although my wife would disagree when I wake up early. I like to be awake at the first hint of daylight. That is actually how the sleep/wake cycle is supposed to work.
Waking at the first hint of daylight is the normal circadian rhythm which involves decreasing melatonin and increasing cortisol levels. I must be making cortisol because my sleep/wake cycle is more normal now. I'm no longer taking Prednisone and I don't wake up with PMR pain anymore so I can't say either one of those things cause me to wake up early.
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I had trigeminal neuralgia (TN) in addition to PMR and other things. I know about the effects of amitriptyline not to mention all of the many other medications used for nerve pain. Neurological side effects include sedation and coma. I was never in a coma but I could certainly sleep for a long time when I took those medications for trigeminal neuralgia.
I had to stop taking all the medications used to treat trigeminal neuaralgia and only took Prednisone. The neurosurgeon that finally stopped the facial electricity was incredulous that I only took Prednisone.
Prednisone is not a standard, long-term treatment for trigeminal neuralgia (TN). While steroids can sometimes be used to manage acute flare-ups, they are not a primary solution for the underlying cause of the nerve pain. The neurosurgeon said he usually saw a list of pain medications a mile long for patients with trigeminal neuralgia.
https://pubmed.ncbi.nlm.nih.gov/36113711/
Regardless of what the above link says ... the microvascular decompression (MVD) surgery I had was the best option. Trigeminal neuralgia isn't called the "suicide disease" for nothing. I lived with trigeminal neuralgia for close to 25 years until I finally had the MVD surgery that completely stopped the facial electricity from recurring.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11884208/
and
https://pmc.ncbi.nlm.nih.gov/articles/PMC5849951/
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It only took a neurologist a few minutes to diagnose TN. I got referred by my ophthalmologist who was treating uveitis at the time. I only mentioned the electricity near my left eye thinking it had something to do with uveitis.
Since I was also diagnosed with PMR -- no doctor ever said the facial electricity caused by trigeminal neuralgia (TN) was GCA. The "electric" facial pain characteristic of TN is typically distinct from the types of facial and jaw pain associated with GCA.
@martha13 I tried magnesium glycinate supplements but they gave me diarrhea. I thought about pairing it with my iron tablets that gave me constipation, but decided not to confuse my gut any further!
Luckily I did not have that problem. Take them at night after food. When I don't take them I have cramps in my legs and feet.
@dadcue Off topic I know but worried about taking Covid shot. I have had flu shot but not Covid for several years.Off prednisone for 6 months PCD thinks I should..
@marymckeith
Last year my rheumatologist recommended the Novavax (Nuvaxovid) Covid shot because he felt it had less impact on my system. In previous years I had reactions to the Moderna /Pfizer injections. The only reaction last year and this is slight soreness at the injection site. I have GCA and PMR currently at 1mg Prednisone daily with weekly Actemra injections. Good luck on your journey.