Anyone taking Melatonin? (if you can't sleep here... - PMRGCAuk

PMRGCAuk

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Anyone taking Melatonin? (if you can't sleep here's a great book! ) (two birds..one stone!)

yogabonnie profile image
23 Replies

I just too melatonin the other night. I have taken it before and I was exhausted. REALLY thought it was a flare... just exhausted. and NOW I read that they do not advise anyone with RA or PMR to take Melatonin ..apparently it adds to the cyklotein storm .. at the same moment PMR is doing its stuff. Any one else know anything about this.? John Hopkins noted on its website that people who are pregnant, breastfeeding, have an autoimmune or seizure disorder, and those who experience depression shouldn't use melatonin.

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23 Replies
YuliK profile image
YuliK

In the U.K. Melatonin is only prescribed by a doctor ...

HeronNS profile image
HeronNS

Interesting. The only sleep aid I ever tried was valerian, which I have to say for the first couple of times gave me a wonderful sleep but the effects didn't last so I stopped taking it. It was almost mystical.

Kendrew profile image
Kendrew

Hi yogabonnie, Lovely to see your face again. Hope you're well and still practising the yoga. I do an hour every day following your sessions last year. I love it and benefited me in so many ways.

As YuliK said, we can't access melatonin other than on prescription. I wasn't even aware it could be an option for insomnia!

I personally have only found a few things that help and even those are not consistently effective.

Interesting post. Thankyou.

YuliK profile image
YuliK in reply toKendrew

Kendrew good afternoon.

I know that Melatonin is used by a lot of flight crews, who have to catch up on that time change.

In the US it can be purchased over the counter.

yogabonnie profile image
yogabonnie in reply toKendrew

thank you so much!! we should have another Live session and I can record it for everyone again... so you have some variety!! Or perhaps I can just record another one and send it on.. I'll work on it. EVERYONE takes melatonin in the US. all the time. kids adults etc. it's just over the counter!!

GOOD_GRIEF profile image
GOOD_GRIEF in reply toyogabonnie

Well, no, not everyone in the US takes melatonin. As was indicated by the OP, melatonin is not for folks with autoimmune conditions. It's also contraindicated for those with high blood sugar and high blood pressure.

123mossie profile image
123mossie in reply toyogabonnie

I'd love to have a yoga video if you decide to do another

Rottsuzi profile image
Rottsuzi

Hi I take valerian root which I love and I think is better than melatonin.

PMRpro profile image
PMRproAmbassador

Not sure I'd use the term "cytokine storm" in PMR/GCA though I suppose technically it is - a question of degree really.

"A severe immune reaction in which the body releases too many cytokines into the blood too quickly. Cytokines play an important role in normal immune responses, but having a large amount of them released in the body all at once can be harmful. A cytokine storm can occur as a result of an infection, autoimmune condition, or other disease. It may also occur after treatment with some types of immunotherapy. Signs and symptoms include high fever, inflammation (redness and swelling), and severe fatigue and nausea. Sometimes, a cytokine storm may be severe or life threatening and lead to multiple organ failure. Also called hypercytokinemia."

nejm.org/doi/full/10.1056/N...

discusses it nicely I think,

Purplecrow profile image
Purplecrow in reply toPMRpro

Thanks. Wow,!

Pixix profile image
Pixix

I’ve taken it, & found it ‘hit & miss’..I didn’t have PMR or RA then, just fibromyalgia. I bought it in the USA...lots of colleagues in my company (headquartered in Ann Arbor, Michigan) took it after long haul flights. Atm as I’ve got sciatica, a flare of fibromyalgia or Polymyalgia and new inflammatory arthritis & trouble with toe joints I take a sleeping tablet about once in 7-10 days. The one that works for me is called zopiclone (trade name in uk), both doctor & consultant disturbed by his little sleep I get. Sorry, long reply! Will watch for the book, too, thanks! S x

EggAndBacon profile image
EggAndBacon

I have PMR and am on pred (tapering)and suffer from insomnia. I was prescribed melatonin by my GP recently and I took it for a week. It had no effect, so I stopped taking it. I haven't heard of valerian, I'll give it a try. Thanks to those who mentioned it.

Purplecrow profile image
Purplecrow in reply toEggAndBacon

There is a lovely valerian tea that works beautifully for stress, anxiety, and sleeplessness. I steep one lemon tea with one valerian tea, and have a very nice sleep afterwards. Just sayin....🥰

PMRpro profile image
PMRproAmbassador

webmd.com/vitamins/ai/ingre...

This is, as usual, a very comprehensive article about melatonin from a generally reliable source. It's one of those supplements that is claimed to do a very wide range of things ...

Megams profile image
Megams in reply toPMRpro

~Great reading this PMRpro - thank you very much.I've been taking melatonin 2mg many years, this is 1st time I've heard of it not being conducive to take along with our steroid meds - not sure what to do now because my sleep is dreadful since starting a betablocker Oct 2020 :(

PMRpro profile image
PMRproAmbassador in reply toMegams

If you've been using that long, it works and you don't notice any problems, there is probably no need to worry.

You could ask the doctor if there is an alternative to the betablocker you are on - they all have different adverse effects. Here they seem to use very low doses, sometimes of 2 different drugs and I suspect it is a way of reducing adverse effects but still getting the samedesired effect. Bisoprolol doesn't seem to keep me awake - I still don't remember dreaming either!

Megams profile image
Megams in reply toPMRpro

~I've only been on the betablocker since Oct 2020 due to Dilitizem no longer working for a/fib.B/b doing the job well (unless I vomit) so reluctant to change again but have Cardiologist appt early may for b/p issues - will raise with him.

Thanks as always for your feedback on melatonin :) ~

yogabonnie profile image
yogabonnie

I AM so surprised it is prescription. anyone can get it here and every other person seems to be taking it! over the counter. cheap.

Knitwit2020 profile image
Knitwit2020

Hi Yoga Bonnie...first, congratulations to your Neice on having her book published , jwishing her much success..as to the use of Melatonin , unable to take it as it causes bizarre side effects for me..horrible nightmares and GI upset the following morning..Dr recommended a natural sleep remedy L -Tryptohan 220 mg found in most Health food stores here in Canada..have used a few times..allows restful sleep without the dreaded morning fuzziness..Take care, Stay well.

I used to take it when I was travelling internationally before PMR to cope with time differences. Bought it recently online in the 5 mg version, slow release.Used it only one time and it was not a success. Felt lousy the next day and had more pain. So you could be right.

Won't use it again.

Megams profile image
Megams

~Hi yogabonnie - have been taking 2mg for some years - 1st time I've ever heard of this being issue with our steroid meds - thanks for bringing to our attention - not sure where to from here as on CPAP + betablockers which has scrambled any notion of a decent nights sleep ~

PMRpro profile image
PMRproAmbassador in reply toMegams

Remember most patients on steroids are taking them short term at a fixed dose - so they may not get the same effect as the doctor expected although it is only a MAY warning. We have adjusted our doses to what we need in combination with all the other things going on. It's much like taking warfarin with foods high in vit K - it is fine as long as the are eaten in moderate quantities regularly, not binging on spinach once in a while!

Chavella profile image
Chavella

mountsinai.org/health-libra... and immunosuppressant medications. Melatonin may cause these medication to lose their effectiveness. DO NOT take melatonin with corticosteroids or other medications used to suppress the immune system

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