Arimidex (anastrozole and osteoporosis

I will be on this for 5 years; and I am most unhappy about the potential side effects. I only found out about these due to my own research!!!

My consultant simply “told” me that I would be on this drug. There was no discussion; and my enquiry about the potential for osteoposrosis was dismissed. Luckily, I have a very good GP, who is prepared to fund (yes, somebody has to pay for it) an early bone scan since I AM at risk due to an early menopause.

hi ive been on this for 3 yrs now and ive developed osteoporosis ,this was found after id broken my wrist badly . i was supposed to have been prescribed a bone suplement when on arimadex or aromasin ,so please ask your gp to put you on this as well ,the drug side effects are not properly explained .hope all goes well for you .im 4yrs post diagnosis and still here so good luck .xx

i came off arimadex after 1 month as my hips and legs gave way and i fell down strairs. onc then changed me to letrozole which has similar SE we have now agreed i can be drug free due to the type of breast cancer i had
sue

Sue - What type was that?

Ann x

Hi
I am taking part in the Ibis II trial so maybe taking Anastrozole or a placebo. All I know for sure is the side effects are horrible. I feel guilty for complaining as I haven’t had to go thro chemo or rads but I feel worse now than I ever did before dx.
I have a spare tyre which would make a Mitchelin man proud (despite watching my diet and trying to exercise) a constant ache in my right leg - hence no exercise and could easily sleep for England. I want to carry on with the trial, not just for any benifit for me but also my daughters and grandaughters but another 4.5 years feeling like this…
Sorry to rant but I’ve been waiting for this topic to come up for ages
Jan

Couldn’t have put it better myself Jan! I have developed knee and hip pain since starting Arimidex 8 months ago and I feel so much worse than I did pre diagnosis. This makes me unable to exercise and I seem to get worse as the week progresses. Also tired and with quite a foggy brain, which is difficult at work sometimes. I didn’t have much in the way of hot flushes during my actual menopause but now I experince them on a daily basis.
Like you I feel guilty as I too didn’t need chemo, although I did have 15 rads. The strange thing is the medical profession seem to dismiss the idea it could be anything to do with the Arimidex, well I’m not convinced frankly.

Chris

hi ladies,

i have been on letrozole(femara) since january.

i have had really bad se’s. i have had horrendous joint pain from shoulders to toe - even in my tail bone making sitting uncomfortable!

also have the same symptoms as laurasue - ht flushes i have now are far worse than when i was going through the menopause.

i have been so fed up as i am not a whinger but my quality of life is being affected. the se’s are getting worse not better.

i saw my onc yesterday and have been given a ‘treatment holiday’ of one month. he is convinced that it is a side effect of the medication and will review after one month. he said that my cancer type made me low risk to bone mets.

like some of you i was wle and rads - no chemo and felt perfectly well up to my diagnosis.

i did discuss the possibility of coming off treatment if the benefits of staying on it were minimal - but he was non - commital and just said let’s wait and see. i cannot imagine feeling like this for the next four and a half years.

i just hope that the pain goes now i am off them.

gill

Hi all,

I’ve been on arimidex and zoladex for 18 months and have had side effects that made me want to have a break from treatment to get some respite. I was 100% ER & PR + so it was advised against and I was put on prozac instead. That helped a lot with sweats and anxiety but still get aches and pains in bones, tired easily and brain fog.

I have bone mets and have zometa for this and am also on Adcal tablets (calcium and vit D). Had DEXA scan prior to arimidex and should have another in Oct at 2 yr point.

Liz

The side effects of low oestrogen are likely to be worse than the menopause because the AI is also stopping any oestrogen being made by the adrenal glands.

Chris - Good to see you on here, again. Sorry your hip and knee are no better.

Ann x

hi ann, mine was tubular 6mm and is the least likey to spread or reoccur.
sue

I’ve been on Arimidex for 16 months and have increased joint pain in my some of my already arthritic joints, plus the hot flushes, plus ‘thin’ hair- not as bad side effects as many people but tedious enough.

I expect I probably helped myself into BC by being on HRT for 10 years - specifically because of hot flushes and night sweats - so it seems like I’m being 'punished ’ twice over!

Can anyone help me with a very basic question- why does oestrogen suppression or withdrawal actually result in hot flushes?
What is the link between body temperature balance and the oestrogen?

I was on arimidex for a year and over that time the SE’s got progressively worse ( flushes, joint pain, dry skin etc) It made my mental state detiorate to such an extent that I felt suicidal. I have a history of depression but this feeling was the worst ever. I was on alot of antidepressants but made no difference. I saw my oncologist about this and she was very helpful and supportive. I was put on tamoxifen as works differently to arimidex. She also said that if that made me feel bad she would recommend being on nothing as quality of life is of importance. I am post menopausal (had hysterectomy at 34) but 38 at dx now 41.I was on hrt for 3 years so can relate to that feeling of being ‘punished’. This disease and its treaqtment has taken so much away from me, I do not want it to take any more. I think oestrogen must be affected by control of body temperature in the brain so hence hot flushes in its absence.A dexa scan also revealed osteoporosis in hips and back so coming off arimidex would help slow this problem down.I also had chemo and rads.I take alendronic acid and calcichew for the osteoporosis.There is some pain on tamoxifen but much less and I can at least work now.

I hope sharing my experience helps.

Rachy xxx

Re the reason for hot flushes, I found this on an American website, hence the differences in spelling!

“No one knows exactly what the physiologic cause is for hot flashes but the beginning trigger is probably increased heat (or blood flow) in the heat regulatory area of the brain. The brain, sensing an increased body temperature, releases chemicals that cause the skin blood vessels to dilate so the heat can be released. Apparently estrogens and testosterone allow the body to have a higher tolerance for changes in core body temperature. In other words, normally a body might tolerate a change in 1.5 degrees C. before dilating the blood vessels whereas in the absence of the sex hormones, the blood vessels are triggered to dilate at a change of only 0.8 degrees C. This means that anything increasing core body heat or even just the heat of increased blood flow at the brain’s heat regulatory center will cause a hot flash. The hot flash will last or keep repeating as long as needed to dissipate the increased heat. Even women who are menopausal can reduce by almost 50% the number of night sweats by dropping the evening bedroom temperature a few degrees cooler.”

Ann x

Many thanks Ann and Rachy .

I am very interested in the US info though it seems at odds with much of my own experiences - ie I am someone who has always preferred to be cold rather than hot and sleep with the bedroom window open most of the year, no heating in our bedroom and have gone back to light blankets rather than a duvet, etc etc .
I certainly recall times when I have felt overly warm and then a flush has followed to compound the discomfort… …but on many more occasions they seem to have come quite out of the blue with no obvious trigger.
I will certainly be asking my onc about this one - when I eventually get to see him. ( it will be 18 months since my last appointment with him when I was completing rads: wonderful follow-up care in Leicestershire!!)

Hi Ladies

Just finished reading your posts as I am due to start Arimidex soon. Must admit I now am terrified as I am normally an active person and the thought of osteoporosis is frightening. Has anyone been on this drug and not had any side effects? I know we all may suffer differently but I really am considering refusing it and taking my chances.
I have gone through menopause a couple of years ago but still get occasional hot flushes. These I can cope with but am seriously worried about bone thinning. My oncologist just said that I am not to worry about reading se’s unless I get something that I never used to have but quite honestly this doesn’t fill me with confidence.
Sorry for the moan but any info would help.
Thank you
Babs x

I was on Arimidex and now Aromasin because I found the aching joints quite bad. It isn’t really much better with Aromasin but I find it bearable and I do a lot of exercise (pilates, aqua aerobics, swimming, walking, gym workouts etc), much more then I did before BC to be honest. I think this keeps me mobile. I have had dexa scans and have osteopaenia (which means that my bone density is not normal but isn’t low enough to be osteoporosis). So I was put on alendronic acid and Adcal D3 (calcium and vitamin D). At my scan last year my bone density had improved with this treatment.

I know it is really important for me to continue with the treatment because I was 100% for oestrogen and the side effects that I experience are clearly not as severe as some people find.

We are all different and you may not actually get any side effects.
All the best
Anne

Oh dear this is all worrying. I’ve been on Arimidex for nearly 4 months and it’s hard to know what causes my tiredness (I’ve overdone things big time in the last 10 days and have learnt a lesson), my hot flushes, my headaches (normally dehydration or not eaten enough) and my stiff body. I feel and look like an 80 year old when I get out of bed or up from the sofa.
My GP has put me onto Adcal for the Vit D - my levels are low, which could be the reason for some of my complaints. So hopefully my bones will be protected with the calcium. Mum, Aunt and Gran are all osteoporosis sufferers.

I’m appalled that some of you weren’t warned about potential side effects by your oncologists. Mine went through them, and said that if I have a bad time, it’ll be easy to try something else. I got the impression that Arimidex was the drug of choice, but there was no doubt that my quality of life should not suffer.

River x

Thank you all for your comments. This was my first venture into the forum; and I wish I had done it before! I have to say that the sheer lack of information VOLUNTEERED by my consultant was zilch. This applied all the way along the line from first diagnosis through to arimidex. The onconologist, to be fair, was completely open abou the SEs of rad (I was lucky no chemo) but still nothing about arimidex.

The only reason I knew anything about the SEs of arimidex before getting the little packet (with its very depressing list) was due to my own research.

I have, in fact, complained to my GP about the fact that you only get information if you ask a question!!! BUT, if you do not know what SEs you may have, you cannot ask the questions to get the answers!!! Will I turn into a little green man from Mars? Don’t know, didn’t ask that question.

Hi

Good to read your comments on Arimiidex ladies and have decided that when Dr writes out prescription I am going to ask for regular bone scans and vitamin D testing to see how things are going. Also like yourselves, if the pain becomes unbearable then I too will ask for something different. It’s given me confidence knowing that I don’t necessarily have to stay on this particular drug for 5 years.

Hope everyone is now feeling good.
Babs x

Hi ladies,

Have read the posts with interest and felt i had to comment too.
I had bc and subsequent chemo nearly 4 years ago, and have been on arimidex nearly that long.
I must say, apart from the hot flushes, I have not noticed much difference. The odd twinges here and there. I have also been on ad calcium vit d tablet from the beginning. I have had two dexa scans, and have some deterioration, but not enough to put me on another medication at the moment.
I walk most days and swim once or twice a week.
I have a reasonably healthy diet, but not excessively, and I like my wine!
Everyones different I suppose.
Rosie x