Pegasys and periods and trouble sleeping - MPN Voice

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Pegasys and periods and trouble sleeping

NCB1983 profile image
18 Replies

Hello to all the ladies out there,

Sorry gents, this is a bit of a girly post!

Of the ladies on here who are on Pegasys and are of child bearing age, do any of you find you get a night of disturbed sleep each month, just before your period starts?

I’ve been charting it and it’s literally every month, on a Tuesday for me. I take my peg on a Sunday.

I find that I can’t fall asleep easily, despite being tired, when I do fall asleep it’s a light sleep and I’m easily woken. My dreams are vivid and always based on real life situations I am experiencing at the time. The next night I will sleep as normal.

Is this just me? Any tips from anyone?

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NCB1983 profile image
NCB1983
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18 Replies
MAP44 profile image
MAP44

Hi

I did find I experienced one night of insomnia 3 days after my weekly injection. It was totally related to the pegasys so I adjusted my needle night to a Wednesday night so I could adjust my sleeping on the weekend when I was off.

It disappeared after after 6 months of treatment so I chalked it up as a side effect.

Sorry not really cycle related but thought I would add my two cents and see if it helps answer something for you. 👊🏼🙂

NCB1983 profile image
NCB1983 in reply toMAP44

Thank you for your reply! I feel less "alone"! :-)

I certainly felt alone last night when I wriggled out of bed at 1am, waking my husband and disturbing the cats accidentally as I frustratedly sought comfort in a mug of hot chocolate!

LightNights profile image
LightNights

I'm not on Peg, but I do get this night of sleep trouble heralding the arrival of my period every month. I have had this for the last 2 to 3 years, and I'm chalking it down to age (almost 45) and the delights of perimenopause.

NCB1983 profile image
NCB1983 in reply toLightNights

thank you for sharing. I wonder if it’s period related, or “funky blood” (as I like to call ET) + period related, rather than meds…..

Jody00 profile image
Jody00

Am not on peg just 2 aspirin a day and I have trouble sleeping at night times been like this last few months even before and after my periods .

NCB1983 profile image
NCB1983 in reply toJody00

perhaps it’s period then, related rather than meds… hmm. Thank you for sharing

Anag profile image
Anag

I’m on Besremi and it’s about the same now that you mention it. One sleepless night is ok. More would be a problem. I find taking 5 to 10 mg of melatonin every night for a few weeks is excellent to clear out the brain. Melatonin activates the Glymphatic system, which is the immune system, and cleaner of our brains. 😃 our brains become about 40% smaller till the morning and then they start fresh the next day. If we don’t sleep enough, this procedure doesn’t work well that’s why we have brain fog on days where we haven’t slept well. 😉 cheers!

NCB1983 profile image
NCB1983 in reply toAnag

oh top tip! I’m going to look into that. The brain fog after a sleepless night or two drives me insane!

Scrollernut profile image
Scrollernut

I just turned 80 and started having hot flashes!! I’ve been on hydra for about 3 years with ET. Sometimes they are HORRIBLE!! At 80!! Give me a break! Oh well. Could be worse. My daughter at 60 has them even worse… on meds that don’t really work. She even carries a small fan with her… (no MPN) soooo all is in perspective I guess. 🤪

NCB1983 profile image
NCB1983 in reply toScrollernut

sorry to hear about your hot flashes. I (luckily) haven’t experienced those yet. Maybe get yourself a small fan, like your daughters?! Thank you for replying to my post

MoNut profile image
MoNut

Yes I’m sure Peg interferes with your sleep. If I do get to sleep I awake easily and cannot get back to sleep. Im past my childbearing years.

NCB1983 profile image
NCB1983 in reply toMoNut

thank you for sharing. Sleep disturbance isn’t in the leaflet with peg is it? It should be!

gilded profile image
gilded

Hello. I’m well past child bearing age and am on Pegasys. I’m one of those fortunate souls who has never experienced insomnia. I jab myself just before I turn in at night.

NCB1983 profile image
NCB1983 in reply togilded

thank you for sharing your experience

SeaweedSalad profile image
SeaweedSalad

Hello, I am not on Pegasys (I have PV JAK2+ on Baby Aspirin & Venesection only), but I do have periods (38). I thought it was customary for a person with periods to potentially experience disturbed sleep just before the period starts, often due to a small rise in body temperature at this phase of the cycle. If you can time it to your cycle then it could quite possibly be period/hormonal related, even if relatively new to you. I can't speak for anything else.

I can really recommend the book 'Period Power' by Maisie Hill (on paper or audio) maisiehill.com who describes most excellently the different phases of the menstrual cycle and how one might feel physically and emotionally at any one time. This book was such a revelation to me at validating and informing the lived experience of having periods it made me quite sad and angry for all the menstruating people out there that have and still suffer under our collective ignorance.

BBC Sounds have also had a great series called '28ish Days Later' by India Rakusen bbc.co.uk/programmes/p0bvg9nm that also goes through what happens each day alongside many cultural, social, historical, relational and scientific references and things of period related interest!

Worthwhile information for all humans, not just the ones with periods!!!

NCB1983 profile image
NCB1983 in reply toSeaweedSalad

Thank you for your reply - I shall take a look at the recommended reading/listening/watching! I'm 40 and never had trouble sleeping until about 6-12 months ago, hence why I asked the question. But, you're right, it is likely it doesn't have anything to do with the meds and more to do with my hormones!

SeaweedSalad profile image
SeaweedSalad

Well I don't mean to rule out a Peg connection entirely - I don't expect the impact on gendered hormone cycles is taken into account on clinical trials (happy to be proved wrong) so if you started Peg 12 months ago maybe that is a thing for you. I just wanted to throw a hat in the ring for periods as it can affect my sleep too just before it starts. Observing, logging and being curious seem like a good way forward as you are doing! It can be so hard to know what is responsible for what a lot of the time 🤪 🤗 🙏

NCB1983 profile image
NCB1983

Totally agree! And I'm not ruling out the Peg, just thinking that,on balance, it's got to be hormone related (at least in part)! :-)

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