I’ve been on Arimidexfor 5 months: maybe it is saving my life - but it is certainly at a price!
My problems are worst at night; I slept like a log until had to give up HRT on diagnosis last year- since then I haven’t had a single night when I haven’t woken up many times with hot flushes…and if it’s not the flushes, it’s the acute pain in my shoulders!
I already had arthritic shoulders but they didn’t only disturbed me at night very infrequently. I’d only been on Arimidex for a couple of weeks when it was plain that it was affecting my joints - and it’s been getting worse ever since. Whatever pain-killers I take, I still have very disturbed sleep; on a good night I only wake 2 or 3 times, but many nights it’s every hour and a half … very frustrating even though I’m usually able to get back to sleep after the flush passes (and the bed clothes have been restored!) and changing my position has helped to ease the pain in my shoulder.
By the way, I know I’m being a bit thick here but why are hot flushes so much more frequent when one is already hot - or the weather is warmer?
Jill - I swopped from tamoxifen to arimidex (and zoladex cos I’m pre menopausal) and started on the vitamin D/ calcium tablets at the same time. They also did a bone density scan which showed early stage osteoporosis and from what I can gather the Adcal tablets are a routine part of the treatment.
Hot sweats - yep always worse teatime onwards and in warmer weather. They wake me up at night several times. A chillow pillow helps a little bit but I even warm that up and my OH and I have to sleep in separate rooms because of the number of times I’m up and about each night.
And as for the joint aches and pains - why does that appear to affect knees and hands most ? I have bone secondaries in my spine and ribs but they don’t give me the trouble !
Still, if the little pills do the job…
Liz
Hi
Im just a bit confused to see that so many of you hormone positive ladies seem to be on Adcal.
I am on zoladex and tamoxifen (soon to have ovaries removed) and was prescribed Adcal 2 months ago by my GP. However, on collecting the tabs I saw the warning on the box that they contain soya oil.
This concerned me as if you are hormone positive you are supposed to avoid soya (especially as I was 8/8). I spoke to my GP who immediately changed me to another similar calcium/vit d3 supplement called Calceos.
I know the Adcal only have traces of soya in them but for something that has to be taken twice a day indefinately, I was not prepared to take the risk, especially when there are so many alternatives out there.
I only have 1 Adcal a day as it’s deemed to be enough for me at the mo (perhaps because I’m on Zometa for bone secondaries). The Calceos patient leaflet also mentions they contain a small amount of soya bean oil - just googled it in a panic as I too am ER/PR + at 100% for both !! It’s a minefield, isn’t it ?
Hi Lizcat
Now im even more confused!
My pharmacist assured me that Calceos contained NO soya oil, and the leaflet inside the pack doesnt mention it either.
Think this is one to ask my onc.
Do you think that soya oil is a problem to us ER+ ladies?
Hi,
I found 2 copies of the patient leaflet when I googled it and it was only updated comparatively recently. The warning appeared to be for people with nut type allergies more than anything else…not that that helps us a lot !! I won’t have soya milk or anything as overtly soya based.
I suppose it’s one of those things where you get some research that says one thing and another bit says the opposite. In the early days I did ask my onc about best diet and things I could do to help reduce symptoms and risk, but she said to have a normal ‘sensible’ diet and that eating what I wanted within reason would do me far more good than cutting loads of stuff out - excellent !! The only things she has said no to are remedies like black cohosh and sage for the hot sweats and wants me to stay off the anti-depressant route as well. So it’s out with the fan.
Hi Ladies,
I hope you dont mind me butting in but i think you might be able to help me. Im currently on Tamoxifen (have been for a year) and taking Clonidine for the hot flushes and the chewy calcium tablets mentioned earlier on in the thread. Here’s my question, i went on tuesday to see my onc who has given me a few choices regarding my tablets, i had ovaries and full hystrectomy in feb 09 and now my onc is saying that Arimidex is better (than Tamoxifen) for women who have gone through the change he said it has less side effects too although i dont get to many just the flushes and slight weight gain. He said i have 3 options i can either stay on Tamoxifen for 5 years then go on Arimidex for 3 years or change now to Arimidex or take another tablet called Aromasin. Im looking for any advice much appreciated especially if any of you ladies have changed from Tamoxifen to Arimidex.
Thanks Take Care
Leslee x
Hi leslee,
I’m on Arimidex, but only been on then for 2months, the only side effect i get are Hot flushes, (same as when i was on the change)perhap a little more tired. I’m on them for 5yr. so dont really no long term yet.
I have put weight on but thats my own fault, from over eatin tooo much choc, bisc and cakes, but back on track now.
Hope some other can help you
Sunset xx
Hi, since reading comments last nite It must of been playing on my mind, I woke up with pains in my knees had to get up and take some paracetamol. beta this morning. I hope it’s not things to come.
Just goin to hav a warm up on my execise bike as doing race 4 life at 11 am.
sunset x
Hi All
I was on Arimidex for 6 weeks and found the hot flushes unbearable (I live in Spain and the temperature is around 30ºC daily with night temps around 24ºC). I said this to my oncologist and he suggested that I try Aromasil. I have only been taking these for 4 days and already have noticed that the hot flushes are conspicous by their absence! Also the Arimidex wasn’t helping my arthritis.
I think in UK the Aromasin is the same as Aromasil.
Best wishes to all
Margaret xx