on arimidex, have researched this as much as possible and it appers to be the best option.
i too, was origially given just enough for 2 weeks, went to mt gp who immediately prescribed 2 months supply and made it a repeat pres.
have had a few side effects, mainly nausea and tiredness, but if this the price we have to pay, then i am sure it will be more than acceptable, HOPE SO
For the record, I’ve been on Arimidex for 5 months and suffer achy joints in fingers, thumbs & wrists.
and I’m male, so it is not a hormonal issue, just side effects,
I have been on Arimidex since May 2006.
Every now and then I think about coming off it, but don’t quite find the courage. My feet hurt quite a lot but not all the time.
However, I’m frightened to walk anywhere in case they start really hurting and I can’t walk back. I also have small skin eruptions in my upper back - these are often itchy and I don’t realise until I scratch (and take the tops off) that this has happened again. They take ages to heal. They feel like a cross between a spot and a bite.
My memory has definitely been declining slowly over the last year or two but I don’t know if that’s Arimidex or age - I’m 52. And I have zero sexual desire, and in the last year have tried to have sex twice (for husband’s sake and to try and get some intimacy back) and it has been very painful, even using lubricants. There has definitely been thinning and shrinkage in the vaginal area.
If they had told me that sex would be off the menu when I began taking the Arimidex 2 years ago, I would not have started taking it. I’m too young not to have a sex life. This is pretty much the one thing they know will happen to pretty much anybody on Arimidex, but my onc didn’t tell me. I have read today that there are solutions, which may help, so I am off to the doctors this week to ask about ‘female viagra’ and something called ‘replens;’ which apparently works for a few days at a time.
My onc has said the feet will stop hurting pretty much as soon as I come off Arimidex, but I don’t know about the sex life. And my onc isn’t somebody I could ask about that.
Oh, well, nearly half way through the course now - only 2 years 7 months to go!!!
hi all you arimidexees!!
How thoroughly reassurring for me when i read through all your messages- I could hug you all as I have felt that I’m going slowly mad with all these symptoms and not making sense of it all.
I started taking arimidex 2006- i was on tamoxifen for 2yrs (side effects not too bad except for sweats) but underwent recon and wasn’t taken off tamoxifen during surgery (can cause blood clots) even though I was concerned. well, 10 days after surg for recon had a pulmonary embolism(blood clot on lung) and nearly died- unbelievably scary. thing was, they carried on giving it to me and it wasnt until i queried it with BC nurse as side effects say it can cause blood clots they agreed that yes, I should stop taking it! I had had my ovaries removed the yr before(aged 40) so was already plunged into the wonderful world of menopause which meant i could then be put on arimidex. I was quite excited about going onto this, especially when told there are much less side effects . WRONG!
joint pains- I feel like a little old lady in the morning, hobbling around before i loosen up! I ache from head to toe most of the time but hands/feet /knees the worst
tiredness- have never felt so knackered in my life! By the evening i just want to curl up in a little ball! I used to be incredibly active and still try and maintain this but do ache afterwards
Emotional- can’t believe how emotional i get- burst into tears at the drop of a hat! Really embarrassing at work- am rapidly loosing any street cred but just dont seem to be able to help this
confidence- this has taken a complete nose dive
However, despite all that i will continue taking it (been on it 2 yrs, no improvement of side effects!) because you are all right - the risk of not taking it doent bear thinking about!
Thank you ladies- I cant tell you how much youve cheered me up by realising I’m not going completely bananas just yet!
lol Anne xx
Hi all reading through your comments this morning has really helped me understand the side effects re Arimidex.I also suffer with really bad joint and muscle pains and it is worse in the mornings and every evening,I have only been on this for 4 months and spoke to my GP last week who is contacting my consultant but now after reading some of your comments I am worried they will change it to another tablet that is not so effective.
I have the same side effects as Anne and some days are worse than others 4years and 8mths to go but it sounds like side effects are a better option than stopping or changing to another cancer drug.
Thankyou all
lol Jackie.
Ah ha, at last I no longer feel as if it is all in my head or down to my age [which is what my onc tells me!].
Have been on Arimidex for 3 years now [aged 54], could not tolerate Tamoxifen at all, and have found the following.
For first year, joint pains were really bad but they have now settled down mainly into slight pain and stiffness in mornings in hips, ankles, wrists and hands/fingers, get a lot of pins and needles though in hands and arms.
Takes me a while to get really mobile in mornings but certainly bearable.
Hot flushes, yes still getting them although now only around 3-4 times a day and the sweats can still hit at times, very embarrassing when you are standing there dripping onto your boss’s desk. Night sweats still a real problem.
Biggest problem is lack of sleep, I cannot get off to sleep easily [even with sleeping pills] and wake up roughly every 1-2 hours, this means I am constantly tired, not a good idea when you are in full time work, and not easily understood by employers [my onc just keeps saying I am tired because of my age grrrrr].
No major weight gain, but hair certainly has thinned.
2 gall stone flare ups and yes, I get breathless at times.
However, despite all of the above, I will keep taking those little pills as the alternative could be far more permanent in ending all the above side effects 
Rgrds/Siggy
Just to add to the general discussion!!! 56, been on Arimidex since May. Hands, feet stiff and painful first thing, wears off as day goes by. Have found COMFRELIEVE ointment fantastic (cannot take Brufen because of athsma) but it s a bit pricey! Tiredness, lack of confidence were awful, but since going back to work its all improving. If youthink about it, we really lost fitness going trhough all that reatment. Sex life has been terrible, but I’m now on Vagifem pessaries. Although this is actually oestrogen, it is so localised that it is not dangerous, even if yo are oestrogen positive. The benefits (normal vagina, bladder that doesnt let you down etc) are really worth it. Hot sweats are slowly getting better. I do get breast pain inthe cancer side, thi s has been scaring me until I read the letter above, I actually wonder if its due to the lymph gland removel. Presume fluid cannot drain so easily now from that breast, so it gets ‘heavy’. Also want to just stop taking the pills sometimes…
Sleep not brilliant, but hasnt been for years! Horrible dreams sometimes…
Best medicine - babysitting my grandchildren, no time to even think!!!
love to all, Zoe xx
p.s yes we are guinea-pigs in terms of long-term side effects, but others down the line will hopefully benefit from this.
Hi All, been on Arimidex since July but have only had minor side affects compared to some of you, but i have notice a marked deteriation in my eye sight, the thing is I am a Diabetic type two and although i had the Diabetic eye scan at the begining of the year which was fine i now dont know if the deteriation is due to the Diabetes or the Arimidex. I have only had my new glasses for about six months and they are now nearly useless but before i go to buy new ones i wonderd if any one else had eye problems with the Arimidex.
best wishes to you all
Tina57
Hi,
Well, I’m glad to say I’m worried now!!! It seems there has been problems with almost everyone taking Arimidex. I’ve been on this drug for approximately two weeks with, thankfully, nothing to report. Is this likely to continue or am I bound to have some side effect?
side effects dont get me started !i feel like i im going mad with the pain in my joints when i mention it at my 3 mnthly checks all i get is a sympathetic smile but no real comfort that yes it is the tablets and yes i must stay on them to stay well ,yes i know that but please stop thinking that im just a misery whose always moaning about one thing and another ,before i was ill i never went to the doctors for anything apart from having my kids now i feel like im a walking chemist ,and yes im grateful im still here but what about quality of life against quantitiy ? everyday i dread getting up as i know i will be in pain most of the day ,i do take pain killers but am only able to take mild ones as allergic to oppiates . when will someone listen to us people who are actually going through the side effects and not just dismiss it as NORMAL . i want my old life back !!! off now to hobble to the shops !!!lol !!! im 58 not 78 !! lynn x
Hi Aroma and all Arimadex friends,
Im there as well and know about all the aches and pains. I have my 3 month check up next week and am just going to repeat all of what you have said to the oncologist about side effects. Yes, I want to be here for a few more years yet but not how I am feeling now. Ive sent a pm to you Tina as I am also Type 2 diabetes and have the same problem with problem eyesite which I think has to be the Arimadex as my diabetic eye screening was fine.
best wishes to all of you
Margaret
Hi all,
Zoe mentioned COMFRELIEVE OINTMENT for pain and stiffness can this be purchased in any chemist,I just take Paracetamol at times but will try anything that will help.
Thanks all
Jackie xx
Hi All,
having just read much of this thread I don’t know whether to laugh (because I now know all of my symptoms are normal for Arimidex) or cry (because I may have them for another 4.5 years).
I was hoping my extreme tiredness and weakness was still the after effect of chemo (finished just over 5 months ago) but it now seems from what others say that it could be the Arimidex!
I am still working part time currently and have a very understanding employer but am concerned about when I will be strong enough to go back full time.
I get bad sweats/flushes day and night. Aching bones and muscles, shoulders, arms, hands, lower back, hips, feet - have trouble walking when I have been sitting for more than 10 mins. Sex is a problem because of extreme pain. Memory still poor and have many ‘half a brain’ moments!
However, I am alive and long may it last!
Something comforting in knowing I am not the only one but I would not wish this on anyone else so my heart goes out to you all.
It would be good to have a ‘friend’ who is experiencing same as me to meet up with for a good whinge and comforting session occasionally. I live in Milton Keynes - anyone else feel the same and live in the area?
Take care all.
Wendy
Hello Wendy, just checked the site and saw your message…share all the problems but at least solved the sex one with oestrogen pessaries once a week for a while. Oncologist and nurse said no need to worry about risks because it so local.
I would love to meet up, but I live in North Yorkshire. We could always phone on a Saturday or Sunday and whinge away for hours absolutely free! I’m back at work too, a hard physical job, sometimes I nearly crawl home.
Yes, if you sit in the car for any length of time you feel a real idiot when you get out and creep along like a rusty robot oooh-aaaah-ing.
Much love and sympathy, Zoe
Hi to everyone,
I started Arimidex in July 2007 and boy did i suffer, I never went through the menopause as i was on HRT but Arimidex was like having 2 menopauses all at once, when i first started the tablet within a week I was having hot flushes, sweats that would need my clothes changing, then even worse shakes and chills! This went on every hour till desperate i went to see my GP, he prescribed Chlonidine which 25mg three times daily did nothing, I went back after a month and upped the dose, I now take 100mg 3 x daily, I would love to say the sweats have stopped but i would be lying.
All I can say is that over the past year they have improved, instead of 20 a day and night they are down to about 6 a day, the chlonidine takes the edge off them but does not stop them completely, they are now bearable though still uncomfortable. My pharmacist did tell me that they would lessen in time, i was impatient and wanted them stopped immediately. I tried everything, sage, starflower oil, vitamin E all to no avail. I now carry a battery hand held fan with me everywhere i go and the bedroom and lounge have big fans in them to cool me down.
After 13 months they are a part of my life, I never thought i would ever say that, you just kind of get used to them and carrying a small hand towel with you to mop yourself up, Dripping everywhere is not a good look but i have just come back from a sunbathing holiday in Menorca (slapped in factor 50) and i hardly felt one there at all!
I hope that they soon lesson for you all, joint pain well so far so good, i do have cervical spondylosis in my neck but exercise it all the time and had that for many years before BC, I take calcium and glucosamine every day to help with my bones and joints, that may help me.
Best wishes to you all
Suzzanne
Hi everyone, Im just on my second pack of Arimidex, the night sweats are awful, and the hot flushes in the day time, I wondered if it was with coming off HRT so suddenly, but doesnt sound like it. I am going to try acupuncture to see if that will help, the BC clinic in York offer it so have made an appointment for Monday. I think I’ll try anything!
Hi, am on arimidex and have been for a couple of months now. I do get the flushes but cannot have HRT due to ER ++ of bc. They have improved and are less frewuent but are pretty draining when they happen. I have found the aches and pains with arimidex hard and are worse if do alot of physical work. I have only just finished treatment so I am hoping it will improve soon.
rach xx
I always have my window open at night and have summer weight duvet winter and summer !! Must be menopause at 39 ( oh yes i had a hystrectomy 4 years ago and the flushes were worse then)
I am posting on behalf of my mum. We have both suffered from bc. I had high grade DCIS, a mastectomy and on tamoxifen but for mum it has been worse, mastecomy, chemo, radium and now herceptin. She is also an armidex and herceptin. She has had a really bad time - bad reaction to chemo, neutrapena 5 times, neutrapena after her last herceptin and physically in a bad way. She has now been told (as she lost a stone in 2 weeks) that one of the side effects of arimidex is anorexia and they think that the build up of arimidex over 10 months may be the problem!!!??? She is constantly tired, very down feels sick all the time and no real engery. They keep telling us they think this mainly due to the hard time she had with chemo but I am not so sure reading the problems people here have posted.
I am not sure what we do about all this - is there an alternative to arimidex? Herceptin has had an effect on her heart and they are querying stopping it. It is so difficult to know what is cause what problem and what we do about it all.
We are hanging on in there but I am not sure how much (mentally or physically) mum can take. Hopefully things will improve soon…but this damn disease has taken over both our lives and I wonder if life will ever be the same again!!
Best wishes to everyone out there.
Deb
Hi Deb
After reading your post I wondered if either the helpline or the Ask the Nurse email service may help you. The staff on the helpline will be able to talk to you about your concerns and offer you support and information. Lines are open from 9am today until 5pm weekdays and 9am - 2pm on Saturdays, calls are free on 0808 800 6000.
The link to the Ask the Nurse email service is: breastcancercare.org.uk/content.php?page_id=119
Hope this helps.
Lucy
hi Wendy,
I’m in MK, too. I would love to meet up and have a moan together! it helps to get it off your chest, doesn’t it. ( no pun intended ).
I’m just finishing my rads,only one more to do on monday, then I’ll be back on Tamoxifen.(was put on it inbetween dx and surgery ). I’m 52 yrs old ( but still young at heart! ).
The worrying thing for me at the moment, is that I’m having hot flushes and joint pain and stiffness since finishing the chemo, so what am I going to be like when the Tamoxifen kicks in again? I expect i’ll be switched to Arimidex, or similar, after 3 years. Reading the posts on here today has made me woried, but at least I’m pre-warned!
Margaret C. has given you my email address. Do get in touch soon.
Best wishes,
Ann x