Who was it said about the chills as well? I describe it as having a broken thermostat. Currently sat on the sofa with my hood up, under a duvet and my feet are freezing. But I know I’ll be bursting into flames in a little while. I find it so wearing, as every time I burst into flames the word “CANCER” leaps to the front of my mind, and I’d really like it to fade into the background for more than an hour at a time.
I’m finding Citalopram has helped with the intensity, but I find it really weird that my arms and legs sweat. Very odd, and not good if I’m wearing certain pairs of cotton trousers, as the dark sweaty patches look most unsavoury.
Just because a drug is called a beta-blocker or an anti-depressant doesn’t mean that that’s the ONLY effect it has. Just like other drugs, if you’re not depressed then taking an anti-depressant won’t change things. (Bit like why they don’t give Herceptin to HER2- ladies, because it won’t do anything.)
Another week on and I am drowning in sweat again! Woke this morning to find all three chillows were not just warm but hot! Either the Clonidine is not effective for me or this is a mega flush week. Will see how it goes for another week or so than go back to GP. Slightly frustrating as you can’t just stop Clonidine but have to be weaned off. Ah well, I’ll keep warm as I scale Ben Nevis on Saturday!!
Revcat, the last couple of nights I too have woke up again, BOILING hot!!! I thought Id conquered them for a little while, and even put my winter 9 tog duvet on!!! And the central heating!!! (Although have the radiator in our bedroom on number 3-4). Must admit, I feel a bit disheartened again. I have to admit, they are MUCH less frequent than they were, and Im even prepared to put up with them during the day, but they rally get me down during the night. And also the constipation is getting me down.
Ive got my check up with my oncology team next wednesday, so I will discuss it with them, and maybe change to something else.
So does this mean I have to be weaned off the Clonidine before I can start something else?
Mandy xx
To foxyferret
sorry to tell you this, but I was virtually side-effect-free on Tamoxifen for the first 18 months
Now I’ve been on it for just over 3 years and the hot flushes are doing my head in !! I had one during a staff meeting the other week and had to take my cardigan off. I had a vest top underneath and, unfortunately, this resulted in revealing the tattoo on my upper arm ( proper one, not rads thing!). This then earned me a telling off from the Head
I also have other wonderful side effects suh as continual hunger, leg cramps and soreness/discharge down below. Gross. Have not been on this forum in ages but came on for a bit of info/solidarity re Tamoxifen and its delightfulness !!
Soldier on, ladies, it’s gotta be better than the alternative…
Nooooooooooo!!! So didn’t want to hear this but yes, you are right it’s a LOT better than the alternative. So I will soldier on and take every SE free day as a bonus and if and when they strike I’ll deal with them.
Over in Benchland it’s now known as Ta’poxy’fen and I think that says it all.
Hi Ladies
I have only been on Tamoxifen for 2 months but have found the SE,s quite bad, not had a deceent nights sleep since I started due to hot flushes ( and I thought being on the St Eroids was bad enough Humpff !! ) Leg pains are sooo sore and I am now back at work part time with very short/cropped hair and loely RED ears half the time lol, I was told I would be on them for 6 months to start as my score was 3/8 and Onc said if SE,s out weighed the positives he would take me off but now advised prob be on for two years minimum ? I have an appointment with him in December so will persevere until then and then go over it with him as im struggling on them but as you say if its beneficial in any way its got to be done , good vibes to all
Latest update!!!
I spoke to my GP on the phone yesterday about the Clonidine and its side effects. I told her Im still getting the odd one in the night that wakes me up, as well as the odd one in the evening. We agreed that nothing will eliminate the hot flushes completely, and they ARE much better than they were. However, I told her about the constipation. The compromise is, Im staying on the Clonidine (50mcg in the morning and 75mcg in the evening) but shes given me some Senna to take in the evening.
First night on new regime tonight!!!
I’ll keep you posted!!!
Mandy xx
Good to get your update Mandy… I’d have to say my flsuhes are pretty much back to where they started now, but will plod on a little longer before speaking to my GP… Also, due to other onging investigations, a drug change just now would be a bad idea!
For leg cramps, drink a glass of tonic water or bitter lemon every (other?) day. I didn’t know that the pain was called leg cramps. I’d had them before but regularly on Tamoxifen.
There is a quinine-based drug for leg cramps but it can’t be taken long-term. There’s enough quinine in the drinks to deal with Tamoxifen-induced leg cramps.
If I remember to drink tonic water regularly, I won’t get night leg cramps at all.
After three months of Clonidine and no substantive change in the frequency or intensity of flushes, my GP has now switched me to 37.5mg Venlafaxine, which is an anti-depressanat at a very low dose (about 10% of what they give for depression). We’ll see if this works - if it doesn’t I htink there are still other options other than ‘shut up and get on with it’.
So just to say to anyone reading this, you don’t have to put up with flushes and if at first you don’t succeed, get your GP to suggest something else.
EDIT… took one venlafaxine and had a severe adverse reaction (extremely rare) so back to the clonidine. GP has suggested I consider either acupuncture or meditation - anyone any experience of these?
Revcat, I had 10 sessions of acupuncture this time last year for my flushes. Whilst it was very relaxing and made me make time for ME, it didn’t make one jot of difference to my hot flushes!! I’m persevering with 50mch Clonidine in a morning and 75mcg in the evening. It has reduced them but I must admit, recently, I do still keep having them. And whilst I don’t expect any miracle cute to eliminate them all together, they seem to be a little more frequent recently than they have been since starting Clonidine. But I’m full of a cold so wonder if that’s why?!
Try the acupuncture, it may work for you.
Good luck and let us know how u get on
Mandy xxx
I dont just get Hot Flushes, if I am outside in the cold I steam. Very embarrasing, I also sweat profusely and whatever I wear does not help as I can be nude and have the same problem. I am so fed up with being continually saoked. I no longer drink and have one cup of coffee a day. My flushes even happen when I am out running and as I am out doing the marathon for BCC this year it is super annoying, nothing better then being hot and sweaty from a work out and then get even hotter and sweatier with a flush. Really getting to the point that I do not know if I should laugh or cry. Lately just crying and feeling sorry for myself. I have been on Tamoxifen for almost a year and it is just getting worse.
Hi there. I’ve been reading all the stories about Tamoxifen and hot flushes and getting very depressed! I was on H.R.T. when I was diagnosed, had to stop taking it and so of course I now have the hot flushes back which were the reason I started taking it in the first place! I was so relieved w to be told I didn’t need chemo or radiotherapy, but the onchologist is very keen for me to take Tamoxifen (the surgeon said I was a borderline case in his opinion) - will the Tamoxifen mean that my flushes get even worse? They’re driving me mad - although at least they don’t wake me up in the night (needing to go to the loo three times a night does that!)
Hi Elaine 5, sorry it is so long since you posted and only just getting a reply now. Lots of people take Tamoxifen and never get any side effects - the people who post tend to be the ones who do. Whilst HRT is an absolute no-no, along with most herbal remedies, there are various drugs including clonidine (an alpha blocker) citalopram and venlafaxine (anti-depressants) and an anticonvulsant (the name of which escapes me) which can be safely taken at low doses for flushing. Beyond that it’s chillows (I am a HUGE fan) at night, and layers and fans by day. Hope your flushes are not aggravated by Tam - but it is so much better than the alternative.
Hi, found this thread to be really useful. I have experienced both flushes and night sweats but it is the nights I struggle with.
I had frequent, intense night sweats that started after FEC3 and meant that I couldn’t sleep. Have been on Venlafaxine since then (Sept) which helped and I had a pretty good sleep pattern from then. Started Tamoxifen at the end of November and over the last 2 weeks the night sweats have got bad again and I sleep for no more then 90 minutes at a time. Has anyone else changed from Venlafaxine to another medication and what was the impact?
Helen
