Hi Anjie, know exactly how you feel - I feel like stopping taking Arimidex, Im fed up with all the aches and staggering about when I get out of bed - and also not being able to sleep. But then if it came back would I wish Id kept on taking it (I think so). I think we do need to keep on - I know what you mean about painkillers, I try and take them only when really bad. Are you taking any herbal tablets at all?
Shirley
Hello all
I haven’t posted on here for many months, but I do pop in to have a read and catch up frequently. I was DX July 2005 and post treatment I was put on Tamoxifen. In March 2007 I had a full hysterectomy and oopherectomy and was changed onto Arimidex as I was then fully menopausal - and don’t I know it- but then my family probably knows it more so!!! I have great bone and joint pain which I can just about cope with during the day but I take co-codomol at night to relieve some of the pain so I can try to sleep. I’m dropping rapidly on my bone density, and whilst I have been taking Adcal (calcium and Vit D) I have also been prescribed another tablet that I take once a week too. I have a chillow (in fact I have two) and I have to say they were my best purchase ever.
I find walking does help and it makes me feel better overall just being outside and whilst I’m aware I should be lifting weights to help the bone density, I have two small children, so I lift them instead!! I find the hot flushes come and go in waves. I can go for weeks where they calm down and are hardly noticeable and then for no apparent reason, they come back and are then ‘full on’ for weeks before fading away again. People at work have got used to me taking my jacket off, putting it back on again, taking it off …and so it goes on all day!!
I know it isn’t easy, and all the side effects sometime get hard to cope with as they are all quite debilitating, but I have to focus on the alternative and that usually puts me back on track - keep going ladies, the side effects are better than the alternative aren’t they? I wish you all the best of luck and hope you all keep well.
Kindest regards
Fi
XXX
Fi, i completely agree with you about focusing on the “alternative” and it shuts my moany thoughts up. I think exercise helps me move around more easily, it’s in the evenings and at night that I feel uncomfortable. I’ve tried to adapt to the stiffness; at my art class I made a collage of very old ladies as that is how i feel physically at the moment (sorry if you are an older lady no disrespect meant). My Mum has very bad osteoperosis probably caused by arimidex and I’ve noticed that I now move like her when I first get up! I’ve not worked out the dress for work yet as I have to be outside at lot (I’m a teacher). I try to have mulitlayers so I don’t overheat inside as this sets off even more hot flushes. If i’m feeling really sweaty i go outside without a coat to my colleagues horror and this is as good as a chillow! My problem is travelling on the bus to work with piles of t shirts, woolies etc and then end up red faced and dripping during the journey. Can’t carry it all as also have lymphodema and need to use “good” arm for laptop etc.
My bone density was excellent (onc speak) so I’ve been boasting about it to anyone who will listen to me. Hopefully it will stay like that .I think my Mum was an early patient for arimidex so she was never tested until her onc had concerns about 2ndry bone cancer. We’ve got women like her to thank that we are scaned regularly as they had to suffer so the side effects were noticed. Thanks Mum, xxx
Hello again all achey ones
You are all so right about thinking of the alternative to giving up on the arimidex/aromasin…what if it came back? I read a lot on here that makes me realise I have been “lucky” in having early bc and a good prognosis - albeit I have had mastectomy, chemo, drugs etc. Posts on other threads are heartbreaking. I have recently started glucosamine, chondroitin and msm - suggested on here but need to give it a while. Do you ever worry that the aches may be “it” coming back in the bones - how would we know if it’s a recognised side effect or something more sinister. Should I ask for bone scan when I see Consultant in March. I wonder what percentage of women dont carry on with tamoxifen or arimidex?
Well done for carrying on teaching Littlemrs - I taught for 30 years but breast cancer put an end to it. I’m happy not to be teaching now and I often wonder if stress was a contributory factor in my case. All questions and few answers from me today but thanks for all the support on here.
Love
Anjie
Hi There arimidex girls,
haven’t posted for a while, but was thrilled to see Gordon is giving us our treatment for free from april 1st! Good news… I’d rather not have to have it though!
I have read many of the comments about Arimidex, I was on Tamoxifen for 2+ years 15 years ago, and had a load of problems with nausea and sweats,I now have lung mets but am determined to try and stick with arimidex as long as I can. I have joint aches (not specifically pain) in hands, shoulders and hips as well as back ache if I stand for longer than an hour, and sometimes pins and needles. And yes I get out of bed like a much older person!!!
Have tried to keep up walking and am going to get some poles( horror!!!) as I get a bit breathless going uphill. Sweats aren’t too bad now.I do find keeping going helps for me, even just cleaning, shopping and cooking helps me feel more normal and not an invalid.
My consultant is keeping a close eye on my bones, I’ve already had a full body scan and 2 CT scans, but will try glucosamine and chondonitin. I just thought it was me getting old!!!
Am a bit worried about the hands as I’m a handspinner and knit a lot, but just want to keep a lid on these secondaries for as long as poss. Good luck to everyone
Lizzie
Hello everyone. I’m on Aromasin and have really horrible hot flushes and sweats. If I’m out anywhere it’s embarrassing as my face turns scarlet and sweat runs down it so I look dreadful as well as feeling awful.
I’ve just bought a ‘Cobber’ - a sort of cooling neck wrap. It contains a gel which expands in cold water and then stays cool for several days. I keep it in my handbag so when a flush starts I take it out and wrap it round my neck. It really does help. I think the theory behind it is that the coolness on the carotid artery will help you to cool down quickly.
I decided I needed to have two as you’re supposed to let them dry out completely for a few days every so often. The first one I got wasn’t cheap - about £15 including the postage. However I’ve found some on EBay for £3.50 plus 50p postage - much better. A search on EBay for ‘cooling neck wrap’ will find them.
Best wishes everyone
Anthi
Posted for new user Pat
Jo, Facilitator
Had to have a read of all the answers on Arimidex side effects today, as I am feeling very miserable with the aches and pains. I think I am making my husband fed up too!! What with the hot flushes and the aching limbs, I find it quite hard to carry on trying to get back to normal, which I think we all thought we would be after our treatment - I did anyway. I have been on Arimidex for just a year now, and my joints seem to have aged very quickly, so that I am so slow some times, and now that my fingers all hurt, I drop things a lot. I get very tired too, as the nights are very disturbed with the flushes and the pains! What an old moaner you will all say! I told my Oncologist and he said “I only ever took one lady off and she couldn’t walk” My GP is simpathetic but can only give me pain killers. I take Glucasomine, Calcium & Vit D and Omega 3 and try to walk as much as poss. I do improve a bit after I have been up a while. I find the damp weather definitely affects me.
It helps knowing that you are all out there trying to cope too!
Pat, Oxfordshire.
Hi Pat I know just how you feel it could have been me writing your post,I am fed up with the side effects but unable to change Arimidex as I have had a blood clot and im told this is the safest for me but the thought of 4 more years feeling this way seems a nightmare.
I do not work now and if I did I know I would not cope!!its bad enough trying to do my own things.
You are NOT a moaner and please feel free to PM me if you just want a chat to someone who is having the same SE as you.
Take Care Pat
Best Wishes
Jackie
I have posted before on this but here goes again- hope it it of some help.
I have been on Arimidex for only 7 months but have the usual side effects of hot flushes and joint pains which aggravate the existing arthritis in my shoulders. My once v.g. sleep is now regularly disturbed by the flushes and the pain in my shoulders and upper arms - but the latter has been helped a lot by Voltarol. Ask your GP if he will prescribe this for you as it really does help (it’s a non- steroidal anti-inflammatory drug : it can cause gastric irritation but there is another drug that will counterbalance this.)
I do get fed-up with the interrupted sleep and the resultant dozinesss in the daytime but I keep trying different drugs/herbal remedies and practical ideas such as the Chillow or even taking a nap in the day occasionally etc etc -and am really focused on improving my sleep. Since finishing active treatment 7 months ago I am now on daily glucosamine, cod liver oil and Vit D; I try to go swimming twice a week (it’s free for oldies!) and walk for at least 30 minutes every day.
Until recently I never even had paracetamol in the house so I am not really a junkie - but I can’t see much point in having one’s life ‘saved’ if its quality is rubbish.
I had a poor prognosis but I feel pretty good now and have managed to lose some weight. I know BC is random but if I survive I shall have beaten the stats I was given - and if I develop secondaries, at least I shall have gone down fighting! I also feel better now that I have managed to take back some of the control of my own body which the surgery, chemo and rads took away.
I read the posts of women much younger than me (including my own daughter who has BC and is only in her thirties) and feel we older women owe it to them to put up the best possible fight against BC and all its horrible side effects and the changes it brings to our lives. I guess in my case, being unwilling to put up with a poor quality of life has sometimes meant making a nuisance of myself by not always accepting medical/nurse opinion at face value. If I am not happy with anything I question it and have been known to lodge the occasional complaint! (politely)
Ditto to all and every side effect with Arimidex, I have been taking it for 8 months now, in the beginning, I had terrible problems with my hands, eg, carpal tunel syndrome, but this has lessened somewhat with time, wish I could say the others had too!things have got noticeably worse after having ovaries removed.
The hot flushes seem to get intolerably worse in phases, at the moment, I am getting them every half an hour or so after a few months of around 6 a day.The aches and pains, especially in my feet havent changed and somedays are crippling, but because I cannot take anything stronger than paracetemol, I have tried (and sometimes failed) to imagine that the worse the pain is, the more the pills are protecting me from recurrence.
I havent seen it mentioned much on here, but by far the worst side effect for me is insomnia.I am wide awake almost all night and eventually get to sleep around 5am, I then get up at 8am and try to get through the day like a zombie.It doesnt matter how tired or exhausted I am at bedtime,I cannot sleep!
This is affecting my life much, much worse than the other side effects as after 8 months of not sleeping, it is takin its toll on my health, my relationship and day to day normal life, I cannot trust myself to drive anymore as I make stupid mistakes due to severe tirednes. I have tried all the usual herbal things to no avail,I do not want to take sleeping tablets as I know its no answer long term,I have discussed it with onc, but as most of you report, they are not really interested, they just like to promote the effectiveness of these drugs.What I would give for a good nights sleep though!!
Hi I never thought about my sleeping problems being connected to the Arimidex,I do take sleeping pills and go off ok but up 2-3 times in the night and always up by 6am oh how I wish for a good night and to be able have a lie in,at least now I know what could be causing it.
Just another SE to add to my list.
Take Care xx
Have just joined this forum. I was dx with bc 15 months ago. I have had a mastectomy and reconstruction at the same time and am very pleased with the results. However I am suffering, as all of you, with hot flushes, sleeplessness and aching joints. When things get really bad I just think of the alternative and give myself a quick kick in the pants. There is one advantage to not being able to sleep - I can get my ironing done at 6 am in the morning. My joints ache terribly - I am much better in the morning and as the day wears on the pain gets worse. By supper time I am hobbling around the house. I have really enjoyed reading everyones messages. Its good to hear that I am not the only one suffering - I truly thought it was just me until my daughter found you all (not that its nice to hear about anyone hurting). Thank you for all the comments - comical and serious. Keep up the good work. Apparently the side affects do go away when you stop taking them. Roll on 2013!
I hate to say this - but I am 3 years on now with Arimidex and still suffering the same symptons ie aches, sleeplessness, hot flushes. It is the aches that are the worst. When I went to see the oncologist for my regular check he said to try and keep on the tablets. ‘Only 2 more years!’ he said. Only a man could say that!
Does anyone know if after the 5 years we get back to normal?
I wondered if the joint pain was due to joint damage but if we are okay after 5 years then I guess no permenent damage is sustained, just the pain.
I have had Breast cancer twice in as many years. Found Tamoxafin just awful. Arimidex is better as I don’t get quite so emotional, but find I get grumpier easier than I would like. Get a lot of joint pain. Haven’t found any help for that. BUT I am not sure but about 3 weeks ago I was at a B-B-Q and as I was designated driver (I don’t drink much anyway) I drank a lot of tonic water. I have been sleeping better since then. I more often than not am sleeping the whole night through. Or even if I get up to the toilet, I usually manage to go back to sleep. I still wake up feeling tired, but not so washed out. I think the tiredness has to do with the medicine itself. Sometimes get fed up with the tiredness, but it good to feel a bit better rested. I also developed carpal as a result of my second mastectomy and re-build. At least the operation for that is straight forward.
hi
i am new to this forum. I had a lumpectomy in 03 and a mastectomy in o6 and after that 2 courses of chemo, FEC and Tacotere, plus radio and now I am on arimidex. Since then I have always had aching joints. It started in my arms. For the past few months everything has got worse and more frequent. My joints don’t just ache. The pain can be quite sharp and localised. What scared me today that just as my left side was really easing it suddenly transferred itself itself to my right side and with vengence! I moved areas a year ago and my new onc does not examine me nearly as thoroughly as my old one so when he says I’m OK I am less convinced. I was told after surgery that I am high risk for a recurrence and since then I have seen my notes which were scarey! I would love to think that my problems are soley down to Arimidex so what I want to know is does anyone else out there share my symptoms please?? I share the wories of the lady who said could side effects actually be something more sinister. I am only 55. My only sibling has been told she is termimal (secondaries after bc also) so I feel a huge responsibility to outlive my parents. I can’t discuss this with my family because my sibling’s situation is so much worse. Neither do I want to make a fuss with medical staff. I had 3 days off sick in 32 years of work so I don’t think I am a hypochrondriac either. I would really value some shared thoughts.