I have been on it for a week ....
From day 1 I have had mild queasiness and headaches , Day 3 I woke at 3am to a hot flush (having never had severe ones iwth the menopause, this was a bad one for me) and then at 4am as if someone was trying tohit me with an iron bar on my shins...
The mild nausea was at a level that if I didn't have to go out I wasn't going to, but as I had to I carried a carrier bag 'just in case' on a 4hr drive I had to do.
Am also concious of a mild itch 'down there' at times
The hot flush has not come back (long may it last!) but the man with the iron bar is hiding under the bedclothes and my fingers, knees and ankles are noticably stiffer. I am trying not to take too many paracetomol but take it as and when. Still have a mild morning sickness sensation which is not too bad.
Not sure how I feel about being stiff and achy for 5 years, but still...
That little pill packs a powerful punch!
Start radiotherapy soon, so that will be an interesting addition to the mix!
I had horrible hot flashes and mood swings...foggy mind..no pain..I am now exemestane..don't think it is much better..only been on it for a week though... I am praying the hot flashes and mood swings will stop...if not I will change to something else..Also had to start taking something for anxiety...didn't want to do that...
Certainly, Wombat Woo; I shall report back when I've had my clinic appointment. It might take a bit of time as this is a large centre with patients coming from all over the place, but my BCN is very reliable.
Having spoken to the BCN, I've stopped taking Anastrozole since Monday evening as I'm feeling so ill in a difficult-to-define way. I'm sure it is mainly constitutional and not just frustration directed at the disastrous political scene and generally miserable weather. I'm seeing my GP on Thursday.
My own symptoms are:
• Joint and muscle pain especially first thing in the morning, particularly my left shoulder and upper arm (axillary node clearance on left side) and pain in my left wrist (which I seriously fractured in May 2017). Also, my right wrist, which is arthritic. These earlier injuries had settled down, but existing weaknesses seem to have been made worse by depletion of oestrogen.
• Increased fatigue (I have a certain level of chronic fatigue anyway).
• Mood changes, including depression and extreme irritability similar to that of PMT and the menopause. In other words, effects similar to anything related to hormonal disturbance as opposed to environmental factors.
• Slower cogition; like thinking through pea soup.
• Slight metallic taste in mouth, or even lack of taste.
• Loss of interest in food, but no weight loss, in fact slight increase.
I have not had chemo so that cannot be blamed for any of these symptoms. I'm mot taking any other medications that could be blamed either.
The BCN emphasised that hormone therapy is a preventative measure to lower the risk of cancer returning; it is not a treatment directed at an existing problem, and that quality of life is the most important thing to consider.
I've been on Anastrozole for 9 1/2 weeks now and have been experiencing nausea for the last week. There is nothing else that I can reasonably blame for this, not even the state of the nation.
Some of you might find this document useful:
It explains mechanism of action, pharmacokinetics and gives a table of side effects, indicating which are clinically important (in bold italics), which immediate (I), early (E - days to weeks), delayed ( D - weeks to months) and late (L - months to years).
No one individual will have all the SEs; many of them could be due to something quite different, but it's a handy chart.
Fatigue is down as E,
Weight gain as D,
Nausea in bold as being clinically important and both I and E.
Anxiety and depression are both D.
Arthralgia is in bold italics as being clinically important.
Not nice stuff really.
I've started to feel quite ill with it so I phoned my BCN today who is sending me an appointment for the Follow Up Cinic at my hospital, where they have clinicians who will deal with all aspects of cancer care except surgery.
hi Wombat Woo thanks for your reply I have not yet started radiotherapy but I must try to drink more that might help. I am feeling a bit nauseous as well so it could be the Anastrozole
hi Appletree I do take ramipril and atorvastatin but never at the same time as the Adcal D3. so I don't think this is the cause of the headache but I will talk to my doctor if the headaches persist to see if there is any reasons for the se's. thank you for sending the information
I have not had any issues at all with headaches while on anastrazole. Only the severe hot flashes
and crying jags in the first couple months. Good luck to you gals!
Fezzy, I don't know whether you have seen this information about Adcal D3 but it might be of interest.
Rare side effects (affect between 1 in 1000 and 1 in 10,000 people)
Can I take Adcal D3 with other medicines?
It's important to tell your doctor or pharmacist what medicines you are already taking, including those bought without a prescription and herbal medicines, before you start taking Adcal D3. Similarly, check with your doctor or pharmacist before taking any new medicines alongside Adcal D3, to make sure that the combination is safe.
Some key points are:
Don't take any other calcium or vitamin D supplements (including those found in multivitamins) with Adcal D3, unless specifically prescribed by your doctor.
The calcium carbonate in Adcal D3 tablets may reduce the absorption of many other medicines from the gut, which could make the other medicines less effective. Adcal D3 should preferably not be taken in the two hours before and after taking any other medicine, but for some medicines a longer separation is recommended. If you're taking any other medicines, get advice from your pharmacist about how to time your doses in relation to your Adcal D3. This is particularly important for the following:
Presumably you are receiving Adcal D3 on prescription, so you could check with your doctor about the SEs and whether you need to adjust the time of day when you take it.
I hope everything soon settles down for you.
I have been on anastrozole for 3 weeks everything was fine for 2 weeks just the odd hot flush bit tearful occasionally but on the whole manageable. on the third week I have been getting headaches which no amount of painkillers get rid of. has anyone else experienced this also sleep disturbance because of the headache. I am also taking adcal d so don't really know which could be causing the headaches.
thanks so much for your reply. I am sure that my ansomnia is not because of the trauma. I was diagnosed in Dec. 2017, and didnt start taking the Anastrozole until Feb. (after the masectomy) I slept fine up until then. The other side effect that I had noticed was that I was an emtional mess. Crying all the time and so depressed, but that passed about 6 weeks later when my body became adjusted to them. I have started taking sleeping aids a couple nites a week just to take the edge off and it helps me get back to sleep alittle easier. I think I might get some melatonin and see if that helps too.
I take Anastrozole at about 6.00pm every evening. This seems to work for me. I tend to go to bed early and am often in bed by 8.00pm, watching the telly until about 10.00 - 11.00, and have no difficulty getting to sleep then.
Deborah, do you think that waking up at 2.00am might be partly because of the trauma of cancer, and not necessarily the AI? What do you find helps you to get back to sleep?I tend to wake at about 5.00am, feeling panicky. I think this is a psychological thing rather than anything to do with medications.
Apparently we humans, whilst being fundamentally animals, have developed rather unnatural habits in sleeping 7.00 or 8.00 hours a night, in a block. This suits an organised lifestyle, but In primitive life we would have been sleeping for 4 to 5 hours at a time, then having a period of activity of an hour or two, then sleeping again. Michael Mosley investigated this in a programme about sleep about a year ago. Apparently his own sleeping pattern is of the primitive kind, which is partly why he gave up hospital work.
It was quite comforting to hear that the 4 hours on/2 off pattern is normal for some. I downloaded a number of interesting programmes onto iPlayer, and when going through a bad patch of wakefulness, came down to sit at the computer and concentrate on something absorbing. I would then go back and sleep a few hours. It's not so good for people who have to get up to go to work, but for anyone who is retired, following Nature's guidance can be quite cathartic.
I currently take it in the morning but am thinking about taking it at nite. Ever since i started taking them i dont sleep through the nite. I wake up every nite about 2am for 2 or 3 hours. I am thinking if i take it at nite i might sleep better. Does anyone have the same problem?
I take mine just before bed on the assumption that if there were to be any side effects like hot flushes etc I'd be asleep when they were at their strongest, and it seems to work for me but it's trial and error really - some people take it in the morning.
I keep the tabs by the bed so if I forget to take it before I get into bed but remember before I turn the light out, I don't then have to get out of bed to go downstairs.
Good luck. x
The brand I was given by the hospital pharmacy for my first prescription for Anastrozole was TEVA. That supply was for 4 weeks. As I had no ill effects from that, my GP requested the same and Boots pharmacy got it in for me. My GP gave me a prescription for 2 months' supply.
As others have said, whatever brand you start with, it's perhaps sensible to stick with it until you come out with some unpleasant SEs (if you do), in which case it might be time to try another brand.
My local Boots pharmacy (a small one in a small shop with friendly staff whom you get to know by sight) are quite obliging and will phone up their head branch, if necessary, to check a particular brand is available.
Not sure if you can request initially, but once I realised Accord was fine for me i asked the Doc, who said No, he couldn't specify but the pharmacist could (?) so I asked the pharmacist and she has put it on my repeat prescription. The other thing the doc could do if you ask is to give you 2 months at a time on repeat so you are not forever going down to the surgery to collect it.
It's worth noting that some people swear by other brands, not Accord, so might be worth just seeing what you are given initially and working out whether it suits you, as you might be one who is better on something else. x
didnt realise how how quickly I would get such great replies!
I am a very active 65 yr old with a lovely little granddaughter to take my mind off me, once I feel a bit better and not so scared of being hit/kicked. I only had surgery last Wed.
Im a bit nervous of results, but if all is well, it will be radiotherapy for 3 weeks. You’ve all made me feel so much better about the side effects, I have fine hair anyway, so the thought of losing some isn’t appealing.
It seems Accord is the brand to go for, can you request that from the Dr?
Many thanks, Sue x
Thank you Chick for such a full and honest reply. I’ve got my results on the 20th Sep so trying to push it out of my mind, but difficult at times. I have lots of friends, so very lucky.
Hope you stay well x
Hello Sueharris, you're not being at all vain! For many of us, our hair is part of our identity and a reassurance of who we are. I've managed to escape chemo, but the whole idea upsets me greatly.
It sounds from your posts that you are not having chemo, so there is a good chance you will tolerate hormone therapy better than some who do have chemo. There is some evidence that muscle and joint pane is worse amongst women who have had a course of Taxanes before starting AIs.
I've been on Anastrozole for 7 1/2 weeks now, which isn't very long, but no really bad side effects yet. My hair so far is OK. My hairdresser tells me that hormone therapy can make some people's hair straighter or more curly (no way of predicting which) and can cause some thinning, but not for all women. She also said that for women who do suffer some hair thinning/slight loss, it is not usually obvious to others, and it does settle down after a time.
I agree with what Chick and Optimissy have said; keeping weight down, maintaining a varied and interesting diet and taking reasonable and regular exercise, especially in the morning, is likely to help to limit symptoms. Also, there is evidence that vitamin D can help, so you could ask your GP about that if you are concerned.
Over the last couple of weeks I have noticed that I wake up feeling very bad tempered for no reason at all; this is reminiscent of PMT when I was a young woman. It does feel as though it's a hormonal effect, rather than the state of the World! Mood change is listed as a possible side effect, but it can be contained by finding some suitable distraction. I take my tablet at c. 6.00pm daily, and so far have not had hot flushes.
Onwards and upwards!
Glad you're on the home straight. Following WLE and SNB I had three weeks of rads - no issues - and I've been on Anastrozole for around 18 months now and so far so good re hair thinning, or indeed anything else. On the whole have got off lightly re side effects - possibly a slight worsening of pre existing arthritis in hip but I can still do an 8 mile walk including hills, so not over one ("over the hill!") yet. I'm 66 so I need to remember that some changes in mobility may have nothing whatsoever to do with Anastrozole.....I think the key is to not be too overweight (I lost weight on purpose during the first year of being on the tabs) and keeping active, even if you may be a bit stiff in the morning. I keep to the same brand - Accord - as it suits me and I understand that some people who have problems find they improve if they swap brands, but I was happy with the one i got originally so stuck with it. I also understand that some side effect occur initially and then ease off. People tend to post here who are having problems, and fewer people report if they are having no problems, which can skew things somewhat for people just about to embark on the meds. and scares them before they've even taken a tablet All the best with the rest of your treatment.X
Hope all is well with your surgery and hope you can get radiotherapy out of the way soon.
I have been on Anastrazole for over a year. I have not had any noticeable hair thinning yet. I also did not notice any reduction when I hit menopause nearly 6 years ago.
I think the point with Anastrazole and other hormone treatments is as their purpose is to reduce access to or the production of oestrogen then the main side effects of these drugs will be the same as the issues we face at menopause, only at times even more emphasised. As we don't all experience the menopause the same, neither will we all experience the side effects of the drugs the same. It's a bit individual circumstances and pot luck and you will only find out how it will affect by giving it a go.
By the way, I don't think being concerned about your hair is being vain or anything that needs explaining. Personally, I think when it comes to chemo or other treatments, some people may feel that they can't be honest about how they are really feeling about such things. Because, for example, you may be seen as vain, because other people have celebratory shaving parties, because it is a minor thing in the grand scheme of things, it's only hair after all....... Blah blah.
Well I hated losing most of my hair with chemo and I especially hated being without eyebrows. I obviously still managed it and would not have rejected chemo due to it. But I certainly didn't bleeding well go through that to start losing it again!
So as one "vain" person to another, I have often said that should my hair noticeably start feeling the consequences, that will be the time I will start looking at having a bit of a break or trying another treatment. I have enough consequences of surgery and other treatments to deal with, and you can only put up with so much on top of everything else.
Take care Sue,
Chick 🐣 X
good to hear really positive posts. I am also very active, so hope that will help me with side-effects. I already have hot flushes, so hope it doesn't make them a lot worse!
Any other tips?I still am waiting for my results and then will have 3 x weeks radiotherapy all being well.
early days for me and first time posting. I am hoping that people will tell me if they have suffered hair thinning or not on Anastrazole. I know its me being vain, but its one of my fears. Im just post surgery for lumpectomy and seminal node biopsy.
Hi I've been taking Anastrozole for 2 years , I too was her2 positive , my side effects have been hot flushes stiffness in the legs and difficulty in sleeping . The stiffness in my legs has gone , the flushes aren't has bad now but I still have problems sleeping, I can go to sleep no problem but then I can wake 2 or 3 times during the night does anyone else have problems sleeping with this medication.
I've been taking Anastrozole for about 18 months now. I've been lucky in that I have minimal side effects,. It's only in this last couple of weeks that it seems I should have been prescribed Adcal D3 at the same time. I've just started on these as well so will see if there is any difference. My main side effect is aching legs and hips but after seeing some posts on here, I haven't got much to moan about.
I am her2+ as well and have been on Anastrazole for a few weeks. I have been an absolute
bawling emotional mess for many of those days. It also made me unable to sleep. So, I have
started taking OTC sleeping pills. Although I am a bit sluggish in the morning, sleep is so important
and helped my mood swings. best of luck to you!!
Hi Optimissy and Chaffinch
Like Optimissy I only have Accord brand as over 3 years have tried em all!
So Chaffinch and other ladies it's worth trying Accord first and save yourselves some grief. I have noticed that whichever AI people take most say Accord is best across all these site threads
Good luck and best wishes to all x
Yeah Ruby - my only real aches are from my hip that had osteoarthritis before my bc diagnosis and i think over the past year that is just a tad worse, but then again I'm a year older now.......
Interesting programme last night about load-bearing exercise helping to keep osteoporosis at bay, and of course our hormone tablets can lead to thinner bones, so we need to keep up the walking/running and jumping about! Good on you Chaffinch - you go girl.xx
Go Chaffinch go, that is a fantastic challenge to do, so hope all goes well for you.
Have had my thinking hat on & wondered if those who have bone aches etc on hormone tabs are those who have already got some sort of boney problem. I have always had an iffy back, it just 'went' from time to time. After having lots of x rays & MRI found I had osteoarthritis - which I probably had before BC, but I think has now become a real problem because of the hormones. What do y'all think? xxx
Likewise - have been on Anastrozole for one year now and have no/minimal side effects. Like Laineybo I keep active and I think that helps keep any stiffness at bay. You will tend to hear more posts from people who are having problems with this drug and fewer from those of us that don't have any issues. I find keeping to the same brand (Accord) works best for me as I was prescribed that at first, and decided that if I wasn't getting any problems with this brand I didn't want to risk changing to another brand so the pharmacist supplies Accord only. Good luck. xxx
I am 8 years post diagnosis grade3 and Her2positive
I have taken anastrozole for 3 years and find it manageable with minimal stiffness and fairly light hot flushes
But I do exercise daily and this really minimises side effects so go for it if you can as it also keeps your mood good-important for us Her2 girls!
Best Wishes x