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Bumping up....
Any ideas yet ????
I have been on Arimidex for 20 months and find that yoga and cyling on a bike at the gym really help. I also lift some weights as I know that helps prevent osteoporosis which can happen when you are on Arimidex. Walking is also good and once I have made the effort to go to the gym I honestly do feel better and much less stiff and old! I am a very fit 70 year old who first had BC at 51 and then it recurrred nearly 2 years ago in the same breast.
Re the hot flushes, I find these get better with time but then suddenly reappear with a vengeance. When this happens I sleep on a towel. I also think alcohol increases the sweats as does very spicy foods. But I need a glass of wine in the evening to keep me going.
Thanks for that - I'm 44 and completely unfit !! I'm trying to get out for a walk on the promenade every day and also on my bike (it's electric so I don't have to pedal if it's too windy or I get tired). Can't lift weights as I have lymphoedema and at the mo I am banned from carrying almost anything in my left hand.
Hot flushes - I don't drink and hate spicy foods but am trying to drink more water. Read at weekend that you should drink water at room temperature rather than cooler cos then your body will warm up to compensate and I could see the logic in that. I do have a chillow that helps a little bit. The last day or so, they've started to get worse again as the weather has got relatively warmer - for once I had been grateful for the minus temperatures !
I have been on Arimidex since November 2007 and don't find it too much of a problem. I am 56 (57 in February) so well menopausal when I started. I am taking multivitamins with cod liver oil, prescribed by me, on the grounds it will do my joints good! I do get some hot flushes at night but just chuck off the duvet and wait to cool down. Apart from that I have changed nothing and it seems all right. What symptoms are you getting then?
Much love
Dilys
xxxx
Thank you for your posts and for starting the discussion lizcat. I'm walking twice a day as I have an energetic puppy and this does help me get moving. I am having a lot of problems with stiffness ( my daughter had to do up my boots yesterday!) and pain in my legs and hands. I'm taking MSM (after reading a post about it on here), glucosamine & condrotin (spelling?), omega 3 oil. I've resorted to paracetamol in the evening as my legs get so painful and I thought that preferable to getting ratty with my family! A friend has had acupuncture for side effects which she says was very useful if you can afford it. I have 2 pillows under an open window at night and if I get hot just swap them over so the cold side is next to my skin. Most embarrassing is sweat running down my face at work but I've just tried to laugh it off! I don't wear foundation ( never did anyway) or other make up on my face as i think it would run so try to go for "dramatic" eyes instead. I'm not sure if it has the desired effect but one can only try!
I too exercise three or four times a week at they gym. But the best I have come across for coping with the side effects of Arimidex - is not drinking anything alcoholic. I have now not even had a glass of wine since New Year, and the effect is dramatic - no more muscle pain, hot flushes minimal!!
I will have been taking Tamoxifen for 2yrs this coming March and the consultant originally told me I would change to Arimadex after 2 yrs for a further 5yrs. Are the side effects similar with both drugs? Presently I get night sweats and my joints ache quite badly sometimes but I guess thats a small price to pay for the benefits. Has anyone else changed from Tamoxifen to Arimadex - is that standard procedure? Be very grateful for your comments x
Yes it is if you are post menopausal.
I was prescribed calcium/vit D alongside Arimidex but the aching joints were just too much no matter what I tried (cod liver oil, glucosamine etc).
I was so fed up I asked my onc to put me back on Tamoxifen. She pursuaded me to try another brand of aromatose inhibitor and put me on Aromasin last September. I can't say it's brill but at least it's livable with.
Maybe if you really are suffering, it might be worth talking about a change?
Good luck.
Caz xxx
I'm seeing the onc on Monday so I'll ask about another brand. I was on tamoxifen but as I was taking an SSRi and was concerned about the interaction (reported on cancer research site) instead of investigating whether it was the type i take Ithe onc switched me to arimidax. Now waiting hormone test reults as I was still having regular periods until 3rd FEC. As i've cut down SSRi to minimum dose maybe I'll ask to go back to tamoxifen as I didn't have such a problem with my joints on it rather than taking yet another additional drug to switch off my ovaries.
I've noticed that anything that would normally make me slightly hot now triggers a hot flush but exercise is good for us and does help with my joints.
Hi i have posted many times on this site re the same problems, mine was mainly the sweating, morning noon and night, when i first started the Arimidex August 2007 they took over my whole life, at night i sweated so bad that i had to change my duvet for sheets so i could change them in the middle of the night by morning i smelt dreadful! hated it, by day i used to carry spare underwear with me as i could actually wring my pants out they were so wet! I always carried a towel with me everywhere i went to mop myself up. I have to say that now things have improved greatly, I still have a fan in every room and carry one with me everywhere i go but everything has calmed down, fingers crossed the sweats at night have practically stopped, I still get flushes and the odd sweat during the day but nothing that prevents me carrying on with my normal activities. The help for me was from Chlonidine, i had tried magnets,sage, EPO, starflower everything 'natural' all to no effect but Chlonidine definitely gave me my life back.
Yes i still get nausea from the sweats which i loathe but it does pass.
There is help available but when you first start Arimidex and get all these nasty side effects you think it is going to be like it for life and your whole life is going to be subject to the sweats and flushes, I used to be hysterical with them, my poor hubby went through hell with me and eventually dragged me off to my very understanding GP who told me he would try everything to give me back a normal as possible life again. There are various treatments out there and if one does not work try another, acupuncture is also meant to be very good but i have a needle phobia!
Hope this helps and yes it does get better in time though when hyou are starting out it does not seem that way.
Best wishes
Suzzanne
I can't say side effects have been too bad and they do seem to get better over time. I'm 77 and now take paracetamol for hip pain when I wake. I also force myself to go for walks and always enjoy them once I'm out. Weight bearing exercise reduces the risk of bone loss and I'll probably start taking calcium and vitamin D supplements soon. But my hair is growing so slowly and although it's 7 months since chemo finished and 5mths since I started Arimidex my hair is only an inch long and sticks up like a soft brush. I guess I'm thankful to be alive and able to have these life-saving drugs.
Happy New Year to you all and good wishes for the future.
Hi,
I am new to this forum and would love to hear from anyone taking arimidex after chemo and radio to see if they suffered from, not only aching joints but a feeling of pins and needles in the tops of fingers. I have been taking arimidex since sept 08 and have been told by onc that the aches are common and to take ibruprofen but that he had not heard of any complaints of tingling fingers.
Hi All,
Haven't posted on here for ages as since i went back to work in september i'm always too tired!Felt i had to respond to dreamsorento.I was d/x january 08 at 44,mastectomy & TUG flap recon in march and FEC chemo finished end of august.I haven't had a period since first chemo in may and bloods showing post menopausal so glad as wanted Arimidex as meant to be gold star treatment but i am not so sure now with the aches & pains especially in knees but the pins & needles in the fingers driving me mad as wake me in the night and onc just seems to shrug it off?Hot flushes have lessened since buying the "magnopulse"although have to be careful not to stick to sainsbury's trolley,aches much better since taking the glucosamine/chondroitin/msm but ouch the pins & needles!Dreamsorento you are not alone!!x
Hi,
bling 444 - Morrisons checkouts attract me with my magnet. Sadly I don't think it's doing much if anything for the hot flushes but wearing it anyway in desperation !
dreamsorento - could the pins and needles be from the chemo ?? One of the chemo drugs I had gave them to me - think it was the paclitaxel (or it may have been the gemcitabine). The aches and pains affect my knees, hands and elbows plus they seem to give me muscle ache especially in the thighs, even though they're just fat !!!
Liz x
Hi to everyone. Bling444 possibly the pins and needles are a sign of carpal tunnel syndrome. The side effects listed on my pack of Arimidex give CTS as one of them.I have lots of the aches and pains mentioned before and I have to have an epidural steroid injection for a disc problem that is much worse since starting the drug. Anyway, lokk up CTS on the web and you may solve your problem but not cure it. NHS direct is useful. Jenny
Hi everyone,
Many thanks for the replies about my pins and needles. I have just started taking glucosamine/chondonitin/msm and am forever hopeful.I will look up re carpal tunnel syndrome and see whats said. I suppose these things are a little price to pay to hopefully be clear of cancer but in the middle of the night things always seem bleak. I have now had a back xray in case anything is trapped but i'm convinced that the tingleing is to do with arimidex which has also given me clicky joints especially in my hands.
many thanks lyn x
Hi all,
I am also getting clicky joints in my fingers I didnt know that it could be Arimidex.
Anyone know if lifting is banned and for how long?If I carry anything heavy my breast becomes achey and I get pain in my arm
Thanks
Jackie x
Hello all,
Yes........ Like lots of you have joint pains -have beenon Arimidex for only three months- just 57 months to go!! My doc has put me on diclofenac painkillers - does help but don't really like taking them regularly.
My son has been doing a bit of research on this and has come up with an alternative that is a natural product called Celadrin -for joints and cartilage- there are scientific research papers on its success but my oncologist hasn't heard of it so couldn't say whther it would be appropriate - has anyone else heard of it or like to google it andsee what you think. It's much cheaper than Glucosomine and chondritin that I have just bought.
Look forward to hearing from anyone on the subject.
Not sure I can keep taking the tab but don't know if I dare stop!
love xx
Hello everyone on this thread - I've read loads on this site over the last couple of years but never posted. This morning I'm feeling like giving up Aromasin - my hands and feet are SO achey,stiff and sore and over the last few days the pains are spreading to my knees. Also have numbness and pins and needles in fingers - think it is another common side effect. I've been on it since last Sept and was on tamoxifen for 2 years before that. Consultant sort of shrugs and says yes..side effects can be very painful...GP looks puzzled and suggests ibuprofen - really dont want to be on painkillers regularly. I'm sure there are others on here feeling the same - can we keep each other going and try not to give up just yet???
Love Anjie x
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