Hi Ladies: Haven’t been on here since June, but was just having a read thru.
Been on the Arimidex for 6 months now and so far not so bad. Have occasional sweaty nights – like this week – but no worse than the menopause stuff which was about 8 years ago. Do have some aches and pains, at the moment it is in my shoulders/neck. Not sure this is the A, could be a slept in a funny position due to hots. Did take some Ibuprofen Slow Release tabs this morning which seem to be doing the trick – quite powerful, can’t take any more for 8 hours.
Re the rads – I think you probably have all finished now but I did find a fabulous cream from Neals Yard which was for burns and contains aloe, urtica (made from nettles!) and lavender. Cleared up all the itchy, soreness, etc in days.
Had my Dexa scan at end of April which was ok. No one has suggested I take calcium, may check with Prof when I see him in Oct.
One of the side effects of A that I was looking forward to was the “Anorexia – lack of appetite”. Oh please – having put on a least a stone last year that won’t shift.
Am finally seeing orthopaedic guys on Monday for an inspection of my finger before they decide to do anything with it – some days it hurts like hell especially if I catch it.
I guess we have to put up with certain things as we don’t want the alternative!
Let’s hope the rain has stopped for a few days – I think I am getting webbed feet!
Hi everyone, I’m new to this but would love to join you all. I’ve often read the forums and they’ve made me feel better knowing I’m not on my own. I too have joint pain but not too bad. Quick resume: Was diagnosed July 06, had mastectomy Aug 06 followed by chemo which finished just before xmas 06. Then Tamoxifen for 2years. Started on Arimidex Nov 08. In the meantime had hyterectomy Dec 07 and gallbladder removed Dec 08 (neither anything to do with cancer thank heaven) am hoping for a better xmas this year!! I’ve had so much reassurance from reading your posts. Love Laraine
hi im kate 37 and i ve been on arimidex since end of june after ovary ablation for my bone mets…i was going so well for about 4 weeks back doing gym classes and really almost forgot i had this condition…but then bang…hot flushes evry 15 mins all thru the nite and day, washed out tired and irritable due to no sleep and now joint pains in my shoulders ribs hips knees and ankles…i feel so run down and old! on topm of that ive been turned down for every benefit going saying im do nit meet the criteria for anything inc disability living allowance and blue badge…i have extensive bone mets to my spine pelvis and ribs and noone has ever even assessed me yet can determine that im not disabled in anyway…well i cant even kneel down and stand bak up without assistance due to the joint pain.
feeling very low and depressed. i know i shouldnt moan as the alternative is not worth thinking about but at present i have no quality of life, physically mentally emotionally or financially!!! WOT CAN I DO???
Kate, have you appealed against the decisions regarding benefits? I’ve just started receiving ESA after my SSP ran out. I was sent an assessment form and rang Macmillan’s benefits helpline, who were really helpful. I get the impression that people get turned down very frequently, but if you appeal you may be successful. It’s worth givin Macmillan a ring.
I am sorry to read you are having such a tough time
Here’s a link to Macmillan cancer support, the webpage you will be directed to contains information and advice about financial help and benefits available, they also have a helpline you may wish to call for more advice and you can access the number via this link too:
Hi Knowles
Just read about this supplement you must be so glad its working. I too yesterday saw Consultant for first time before treatment starts he said I too could start Arimidex straightaway. I dread to think how I will be later on because I’m only a young 59 and suffer fron arthritis so I have pain which half works with Glucosomine 1,000mg. I too buy from the channel islands. Can you tell me the amount of mg etc. you buy?
I have recently developed aches in my finger joints. Particularly bad in left thumb. |have been on Arimidex since Jan 09. But recently towards end of Herceptin had a PICC line fitted in left arm. Thumb became very bad after that. Anyone had this. Is this a side effect of Arimidex I wonder
hi starfish, I have been on arimidex for 10 months now, thumb started to ache about 6 months ago, I now have trigger fingers in two on right hand and cant make a fist anymore all fingers stiff on both hands, just been for a dexa scan, I did google painful hands and arimidex and there were loads and loads of women on there with same symptoms love suzan x
hi i was put on arimidex agter mast. could only stand it for a few weeks as it flared up my arthuritus and life asnt worth living. so i said i i i want to go on tamoxifen i told tyhe doctors what i wanted and the jolint pain went you can decide for yourselves what cancer tab u take my own gp thinks they are both as good. i am trying taking it at nite to help with the sweats. hopw this helps pammi
i have joint pain too, and im on tamoxifen, so dont know if it makes any difference which treatment you have. i also have trigger thumb and couldnt walk on my foot yesterday. but like someone said “what is the alternative”. what bothers me, is if i have to take medication for rest of my life, cos of having bone mets, will it ever go away? at least you come through menopause! oh well at least im alive. x
Hi, This is my 1st post-so here goes! Have been on arimidex since Nov 2008: and thought I was doing okay, however many side-effects have now started and quality of life is pretty grim. Nausea started abot 6 weeks ago and has got steadily worse now I have to take anti-emetics to get through a day and am struggling to eat. I also have a permanent headache which doesn’t go away with painkillers, bad skin irratation, insomnia and pretty bad depression which I am on max dosage of anti-depressants for. My joint pain is not too bad yet but I have sore neck and back which have pins and needles all the time also “hot pains” in my shins. What a freak. Looks like they are going to change me from the arimidex but as I don’t tolerate hormone preparations well,I’m unsue what to do. Has anyone else experienced these syptoms or similar? Sorry to be a moan but it’s good to get advice and compare notes, it’s a very lonely journey! Take care all,Best Wishes susieque
so sorry you are having so many side effects. being or feeling sick ,is just horrid, i went through that on the chemo. im sure if you keep on at whoever is dealing with your treatment they will find something that will suit you better, and give you better quality of life. and if you are dealing with deppression that makes everything harder anyway. i hope you have good support around you, we are always here if not. i do hope things get easier for you. take care and concentrate on what makes you feel good at the moment and you will arrive at a better place x
Thank-you so much for your quick reply! It’s really great to be part of this forum/group where you can vent all feelings to people who understand. I have grown up family around me but they all have their family and are generally a busy bunch, also we all get quite upset talking about it–so we don’t. Thanks for listening and hopefully next week will see the start of things being sorted out. Take care and thanks again for the advice.
Dont forget you dont have to be over 60 to get free prscriptions - cancer patients are now entitled to free prescriptions-not just your arimidex , I also get Glucosamine and any other medication I need for free. Your Pharmacy or GP will have the forms. There was an article on the news which said that there had been a poor take up of the entitlement for free prescriptions on Medical grounds for cancer patients, which doesnt surpise me as there has been little publicity about it. Bean
Hi I would like to join in this thread as I started Arimidex nearly 4 wks ago. 5 days in I developed a sudden and searing pain in my knee, this sort of settled for a short while, bcn said it was too soon to be related to the medication. Has anyone developed a problem soon after starting this drug? I have never had any problems like this before and wasn’t doing anything particular when it happened.
The pain has now got steadily worse to the point it is can be unbearable. I also have some swelling around the knee joint, is this something others have had on Arimidex? When I saw my gp about it she said it was unrelated to the med and has now referred me to the knee clinic. My knee is the only joint to be this badly effected though I get the odd twinge in my hands and feet. I can’t walk very far and driving has become particualarly impossible so need to work out exactly what is causing it. Other than that I have a few hot flushes, nausea and headaches oh and the blurry vision that others have mentioned. Would be grateful for any advice.
My Mum has similar symptoms to you but we don’t yet know whether it is related to Arimidex. She has been taking Arimidex for about 8 months, having taken Tamoxifen for several months to start with but not really getting on with it due to aches and pains.
About 2 months ago, she tried to get out of bed & couldn’t because her knee was all painful & swollen. We knew that she already had some arthritis in the knee but she said this pain was “different”. The tissues around the knee are all swollen too & hurt at the slightest touch. What followed were multiple appointments with the GP, input from the MacMillan nurse & an appointment with an onc (not a regular checkup appointment) to discuss medication combinations.
What has resulted is - nothing really. She had an x-ray of the knee, which showed arthritis wear & tear. That onc said it “might” be related to her “condition” because she has a hotspot in a rib (but the onc wouldn’t commit & didn’t refer Mum for any further tests). The GP & MacMillan nurse have inundated Mum with painkilling patches, tablets etc (none of which work) & all kinds of devices for the infirm, like a hoist to get her into the bath.
All very nice & caring - but WE DON’T HAVE A DIAGNOSIS!!! Nobody has suggested that it might be Arimidex, though from what I’m reading on this discussion thread, it might be. They have not done a CT scan, biopsy or anything else. The GP has bandied words like Paget’s Disease and Rheumatoid Arthritis. Well, we can all sit & guess what it is but how do you push these people into actually giving you some REAL HELP???
She has an appointment next week with her regular onc (again, nobody suggested getting her an earlier apppointment). We’re worried about that because although he is very professional, he does tend to rush through the appointments & doesn’t really seem to listen.
Any ideas anybody, both about the symptoms and cause and how to get healthcare people to give the sort of help that is needed?
I have posted on another thread on the side effects of Arimidex.
Having been on Tamoxifen for 17 months, I was switched to Arimidex. Ghastly, that is all I can say. I gave it three months, but then consulted my GP (being the first point of call) because apart from greatly increased joint/bone pain, I was also feeling spaced out all of the time, and can agree with Laurasue’s blurry vision too. Not helpful when you have one income and have to do a job!
On a minor note, I think the quality of my hair and nails suffered on Arimidex - not worth mentioning if the drug preserves your life, of course, but on a day-to-day basis jolly irritating, nonetheless, because to most women I know hair and nails are important, especially over such a long period of time.
For the last 6 weeks I have been back on Tamoxifen and although I continue to have bad pain in muscles/joints/bones (can’t make up my mind which!)which fluctuate in their intensity from day to day , at least I am not feeling spaced out.
However, I feel my vision has been impaired and am going to make an appointment with the optician. (On that note, however, I really do feel we ladies should get substantial help with optician costs if the drugs we are taking - which are now free of charge! - are causing us problems not of our own making) - what do you feel? After all, if I was on benefits, both prescriptions and optician costs would be free of charge.
Hello psyche
sorry your mum is having such a rotten time with her painful knee AND no diagnosis. Like everything if you know what you are dealing with it seems much easier. I can certainly identify with the pain at the slightest touch aspect, mine feels like a stinging pain, and I also have swollen areas which seem to vary for example after resting/ activity. I dread being sent to the knee clinic having physio and then its not that all but the Arimidex. Yes, I agree it is very hard to get the medics to listen to us and Im not sure what can be done about that except to keep on at them. I will see how I go BUT I will be back onto my GP/hosp cons if it worsens and persists. I personally think that if you have a joint that may have been arthritic before (like your mums x-ray showed) the Arimidex makes it 10 times worse. I used to get the occasional twinge in this knee before but nothing much.
We really are caught between a rock and a hard place with these joint problems. Best wishes and hugs to your mum.
Hi all, I’m new to the forum but I thought I’d post on this one. I’m not on Arimadex but Femara. At present for a total of 6 years, following diagnosis,2 ops two lots of chemo(one with Taxol) and sandwiched in between rad/therapy.First op in November 2000 so, as they say, hanging in there. I find that the pain is cyclical, one month it can be knees and ankles another hips. having lots of trouble with osteoporosis at this stage, due to the lenghth of time I’ve been on it, hips and spine are the ones that cause me most pain. Another thing is that at this stage my hair is dreadful. it never really grew back from the Taxol, but now I’m losing even more. But hey, I’m still here.