Hi all.
Ive been on letrazole for 4 weeks. So far, just a few hot flushes. However, my sleep is absolutely awful. I wake up 5 to 6 times a night and probably get 2 hours of unbroken sleep at best.
Since chemo started, my sleep was worse due to steroids. Then I had a mastectomy and diep reconstruction which made it uncomfortable to sleep. I just want 8 hours asleep.
Could letrazole be disturbing my sleep? What can i do to improve the situation?
Thanks 
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Hi, unfortunately, yes .
I think it’s a combination of the stress that we are under and the lack of hormones . When I went through my natural menopause , broken sleep was the 1st thing I noticed .
I’m just 1 year since diagnosis and mine is a lot better but I still have the odd night where I either can’t get to sleep or I wake. Hot flushes don’t help .
You can read up on sleep hygiene , the usual stuff . No caffeine after lunch , no screens . For me , getting some light first thing and exercise help . And taking my illuminated clock out of the room , so I can’t see the time .
I try to go to bed and get up same time each day . Easier with light mornings !
I think there is an app called Sleepio that you can be referred to .
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Hi there. I have been on letrozole for almost 2 years and like you i am lucky if i get 3 or 4 hours broken sleep a night. I am still working so i am usually exhausted all the time. I have been prescribed mirtazapine which helps a little…very little. I have had zopiclone which helps a lot but if you take it all the time i find the efficiency wears off. I try to keep that for fri and sat nights when im not working the nect day.
This disease is hard enough without lack of sleep too.
I also have aching bones and joints.
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Hi, I have been on these for 6 months and i am exactly the same where sleep is concerned, hardly any each night, and the aching joints don’t help, i had that before taking these tablets but put it down to old age, but since taking them it seems to have emphasized it more. I did get flushes but they seem to have eased of a lot so grateful for small mercies. I had chemo the last time i had BC but didn’t have to this time so i suppose that’s a positive, not that anything can be classed as positive having to go through cancer treatment
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Thank you all @mouse77, @jackbaz and @klf. Good to know I’m not alone. I’m going back to work in 3 weeks and I’m hoping that will help me sleep longer, but i think if not, I’ll see a doctor. I don’t want to take more tablets if I can avoid it though. Hope you’re all doing well.
Hi bluesatsuma and Jackbaz
I totally sympathise with you. I’ve will have been on letrozole for two years in August. I’m exactly the same re lack of sleep and joint pain, hot flushes and vaginal atrophy.
I’ve found the hot flushes have lessened but I do notice when I change to a different manufacturer that the flushes can become more heightened for a while. Depends on which brand the pharmacy order in. I’ve tried all sorts to help with the hot flushes as well as the sleeplessness and nothing helps long term. I even take a sleep tincture prescribed by a herbalist.
I do find the joint pain is helped if I walk daily and not sit down too long.
The osteopath I see from time to time suggests using an ice pack for 5-10 mins either side of the knees and on any joints which are painful. Oestrogen obviously helps keep inflammation at bay and the lack of it causes us to become tin men
Unfortunately it seems that this AI does have many side effects and some ppl are lucky and don’t have any symptoms
Hope you ladies find that your symptoms improve over time
Lynn x
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Hi @bluesatsuma & others
I’ve been taking Letrozole for 2.5 years, & experiencing the side effects you all describe. Insomnia was affecting every aspect of my life, despite persevering with all the recommendations for sleep hygiene, so I eventually went to my GP, & was prescribed a very low dose of Amitryptilline, which is an antidepressant & not addictive. I can honestly say that it’s been a life changer for me over the past two years. I take the tablet with my Letrozole 30 minutes before going to bed.
I try to stick to a consistent bedtime routine, & now listen to relaxing radio programmes or music instead of bedtime reading. I also found all the insomnia advice from the late Michael Mosley really helpful- it’s still available on BBC Sounds.
I still get the odd sleepless night, but can cope with that!
I wasn’t at all keen to take more tablets at first, but it’s allowed me to continue with the Letrozole which is the critical thing for me.
Best wishes to all, Jules X
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Hi Jules_n
Thanks for the advice.
I tried taking letrozole at night and woke drenched in sweat so stopped that.
Interesting about the Amitriptyline though. I know it’s used for migraines as well and I’ve suffered from those for years.
Do you find it causes palpitations?
Thanks Lynn
Hi @Lynikinz. Thanks for the advice. Sorry you’ve had a difficult time with letrazole. Just wondering about the joint pain. I’ve not had any, or at least I thought I hadn’t. But i’ve had stiff shoulders, fingers and upper arms for a while. I put it down to surgery, then the gym, then sleeping badly. It’s not going away, so i wonder if it is to do with letrazole. Hmm.
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Thank you @jules_n. I will look up michael moseley’s insomnia advice. Might go and see the gp too. I don’t want to take more pills, but after barely 3 hours of sleep last night, I’m not sure how long I can cope on this little sleep. It’s luke having a newborn again. Hope you are doing well x
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Hi Bluesatsuma
I note that you have only recently started on letrozole. Mine seemed to build up over time
Hopefully you won’t have yours increase.
Unfortunately it’s a bit of an unknown with everyone’s experience being different. You going to the gym will definitely help you though. I don’t but I try and walk each day.
Really hope your time on this AI goes smoothly from now on
Best wishes
Lynn
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Hi @Lynikinz
No palpitations thank goodness! The main side effect I have is a dry mouth, but I just keep a large glass of water next to the bed to sip if I wake during the night, and have a large drink as soon as I wake in the morning. Don’t want to drink too much during the night or I’m up at the loo multiple times!!
I’m still on the same low dose I started with, which I’m happy with.
My joints are also becoming increasingly stiff, but I walk every day, as well as swim or gym a couple of times a week. I get very stiff & sore if I spend a day or two travelling and miss my exercise.
Do any of you take any supplements like Glucosamine for example?
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Hi Jules_n
Can I ask what brand and mg you are currently on?
Thanks
Lynn x
It’s one x 10mg tablet. The current brand is Teva, but I’ve had different ones. I believe the dose is about a quarter of the antidepressant dose.
I’ve been on the same dose for 2 years.
It does interact with other medications so may not be suitable for everyone.
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Hi Ladies, sorry you are all suffering with sleepless nights. I have been on letrozole for 12 months now, the first 6 months my joint pain was unbearable. I have been using magnesium spray every night and i sleep like a baby now. Joint pain is a lot better and unless i am very anxious the hot flushes are manageable. I am 69 so went through the change at 50 so a bit different than you younger ladies. The magnesium spray is harrogate make. Expensive but it works for me.
Hi jules_n
Thank you for your reply.
I’ve started listening to a Paul McKenna sleep like a log download each night and that’s helped me get a few hours straight so I’m persevering!
Thanks @polly5, I’m glad you’re getting relief from the spray. I’ve been using it for a while for restless legs. It’s never helped with my sleep unfortunately and I would have been on letrozole two years in August.
The joint pain is worse in the morning and when I’ve been sitting for any length of time and if I’ve knelt down then it’s debatable how long it’ll take me to get up. I’m almost 62… bday on 18th of this month, although I feel 90 atm. Movement is definitely the key and if I haven’t walked each day then it affects me not only physically but mentally too.
Letrozole seems to be the gift that keeps on giving! Some people don’t have any side effects which is great but others do. It’s just trying different ways and heeding various suggestions until something helps. I have purchased some turmeric oil and found that eases the knee and ankle joints a little bit. I do tend to spend around half an hour or so preparing for bed as I have varicose vein cream ( they’ve been more uncomfortable together with more noticeable thread veins) then it’s a spray of the Harrogate spray for restless legs. I’ve even tried magnesium butter on soles of feet at night to no avail
I get relaxed and then along comes the beginning of hot sweats even if I’m in a cool room, a top sheet, cotton bedding etc. You never think this is going to happen. I started peri menopause at 33 and was menopausal at 40 and started hrt at 41 which was a godsend. I couldn’t function and at that point I hadn’t suffered with hot flushes and VA let alone the sleeplessness. After having to stop following diagnosis when I was almost 60, side effects have definitely increased for me.
It’s a small price to pay for coming out the other side I know but I’m clinging on to the hope that the side effects will lessen when I finish these AIs
I wish you well
Lynn x
Thanks for all the replies. It’s interesting to see all the things you’ve been trying. I went to the GP this week and she didnt want to prescribe sleeping pills, but she did prescribe a strong antihistamine that has a sedative effect called promethazine. 2 nights in and it has definitely helped. I jave a 1 month supply, but I’m hoping this will just kickstart me back into a pattern. Letrazole is starting to cause dome bone aches, but these may be due to restless nights. Good luck with the fight for sleep ladies xxx
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Hi, I spray it on the back of my neck and inside elbow, 2 sprays each. It has also helped with my migraines,
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Oh I will have to try that
I have always suffered with migraines
Do you use in the morning as well as the night?
I’ve only been using at night
Just at night. I dont get the headache with them just the visual zigzags that last for about 20 min. You can try magnesium supplements as well with it but i just use the spray. Only get the hot sweats now if i am anxious. Have had a lot of that in the last few weeks as hubby has terminal cancer and was in hospital seriously ill for 3 weeks but home again now so hot sweats settling down again. They seem worse when stressed
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