Melatonin and Pred and PMR: I started Pred. for PMR... - PMRGCAuk

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Melatonin and Pred and PMR

Hindags profile image
13 Replies

I started Pred. for PMR in Dec. of 2016, switched to delayed release Pred in March of 2017 and have tapered from a high of 20 to now between 8 & 7 on the 38day DSNS taper.

For reasons I can't figure, my sleep has deteriorated over the last few months. I noticed some time last November, around 9-8.5-8mg Pred., that my sleep was lighter, more interrupted and sleep onset was longer than I had experienced ever in my life, and even early on in treatment. Pred per se did not interfere with my sleep. On the contrary, I slept better once I began Pred treatment, except for the early morning pain from the cytokine dumping. The switch to Rayos, DR Pred, fixed the latter problem.

One doctor suggested taking more ativan (I've been taking 0.5 prn for a long long time due to pain from various degenerative conditions.) but another said he'd be concerned about dizziness and falls. So since my pharmacist said there is no interaction between melatonin and Pred., I decided to try 1.5mg of melatonin. I've taken it now for the last three nights and it seems to have worked wonders for me.

I did some googling and now I wonder if I should continue taking it. This article is about circadian rhythms of symptoms PMR, inflammatory cytokines, melatonin and cortisol.

arthritis-research.biomedce...

Any advice based on this article or any other resources?

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Hindags profile image
Hindags
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13 Replies

I have certainly found that I am having less sleep and it is lighter in past 4 months as I hit 10mg and below. I take zopiclone and it knocks me out for 2-3hrs then if I wake for loo that is it for the night. Took pill at 9.30pm tonight for early night. It's 00.20 and I am wide awake.

I am sorry I didn't read article yet on melatonin. Think it's prescription in uk (?). I will have an explore and see. But going to try and switch everything off and try sleep again !!😨💤💤💤💤

Hindags profile image
Hindags in reply to

Do you take enteric coated or delayed release Pred at night or immediate release Pred in the morning with breakfast?

in reply toHindags

I currently take 5mg coated and 4.5mg Uncoated in the morning. I did take 10mg coated at night but that definately messed with my sleep patterns. I am not a good sleeper so doesn't take much!

Narducci profile image
Narducci

My quality of sleep deteriorated after starting pred. I take 10mg of Melatonin at night and find it helps tremendously. The added bonus of taking Melatonin is that you will never suffer from jet lag again!

PMRpro profile image
PMRproAmbassador

Melantonin isn't (or wasn't at least) available in the UK except on prescription for a very limited indication so for most of us it isn't an issue. I do remember looking this up some time ago and remember deciding that I didn't think it was a good idea.

I'm on Rayos/Lodotra and part from quite often waking about 4am when it is at its peak in the bloodstream it doesn't seem to make much difference to me. I will go for ages falling asleep as soon as I get into bed and then have a period where I lie awake for ages for no apparent reason.

Hindags profile image
Hindags

Thanks. I called Rayos yesterday to ask if there was any research on the circadian effects of Rayos, similar to the research reported in the article I linked above. She said NO but took a serious approach and reported it a a side effect. I was somewhat surprised at that actually.

I’m going to skip the melatonin tonight. I have to try a new antihistamine which can cause drowsiness....I’ll try it at night.

JanetGarrettN profile image
JanetGarrettN

Hi everyone,

I'm new yesterday, live in the States. Dx with PMR. I am much younger at 55 than the avg. onset of 70-75. One the other hand, just to demonstrate, my mom was diagnosed with MSA 20 yrs. later than the avg. of 50 yrs. So Drs. automatically discounting a diagnosis because of age is unethical in my opinion.

Just have a moment but wanted to say somewhere yesterday I read (here or somewhere else?) that taking the Pred. late and optimally at 2 a.m. works the best with the adrenals and more. Just wanted to throw that out for discussion/opinions.

I am having a lot of pain with my eyes, yes I know the GCA possibility. I have allergies/dry eyes/Sjorgen's normally but these along with intensive headache/eye ache the last week+ is different however not to get too ahead I am winding down on a Rx taper narcotic for my Fibro to be finished in next 2 weeks. Have made eye appt. for earliest possible Jan. 24. Now I'm just trying to observe when it starts each day and get through. There are just too many ingredients in my soup so to say to know what may be what.

Look forward to getting to know you and sorry we all must be here. <3 Janet

Hindags profile image
Hindags in reply toJanetGarrettN

Thanks for the reply. Do you remember whether there was any reason given for why 2am Pred might be optimal for adrenals?

I know that is a good time to take Pred to avoid the early morning stiffness from the cytokines dumping that occurs a few hour later.

JanetGarrettN profile image
JanetGarrettN in reply toHindags

Actually I did a quick Google search and it brought me back to a post within this group 4 yrs. ago by PMRpro. Search for post RECOMMENDED TIME OF DAY TO TAKE PREDNISOLONE by hwigston for all 12 replies

..."Studies have been done that show the optimum time to take ordinary pred (the uncoated white tablets) to control symptoms best is 2am."...

Apparently to do with the dizziness, wobbly feeling, helps with sleep as takes a few hours to get released helping sleep. She also references cytokines are shed in the body about 4:30 am...

Hope this helps. :)

Janet

Sandy1947 profile image
Sandy1947

I take 1 Advil PM or Melatonin liquid (1/2 recommended dose to sleep). I go to sleep around 8 and get up between 3-4 for 5:00 am Pred. Have always had trouble sleeping. All my Drs., Rheumotologist and Internist say this is safe.

Let us know what happens.

Hindags profile image
Hindags

Will do. Thanks for the input.

PMRdaughter profile image
PMRdaughter

I’ve taken Melatonin for sleep. My Naturopath has told me to take he dissolving tablets under the tongue as they work best, BUT not to take longer than 6 weeks because it can cause your peneal (unsure of the correct spelling) gland in your brain to shrink. So just be careful. Prednisone messes with your cortisol and other hormones, which is why sleep is disturbed.

Hindags profile image
Hindags in reply toPMRdaughter

Thanks for the sweet. I believe the dose I take is below the threshold for doing harm. 1- 1.5 mgs. But I will check further.

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