I have been on Arimidex for 4 yrs and my hip, hands and feet pain has become increasingly painful. I had a bone scan last year which confirmed arthritis,and a DEXA scan which confirmed some bone density loss - prescribed Alendronic Acid and Calcichew/Vit.D
I had a regular x-ray a month ago, ordered by my GP at my local hospital, not the one where I am being treated for bc. Saw GP yesterday and he said nothing abnormal showed up. I asked if the bone pain could be due to side effects of Arimidex and he said yes, and I should stop it for 3 weeks to see if the pain subsides. He said if the pain decreases, he will send me to an Oncologist (was discharged after chemo and rads 4 yrs ago) for an alternative to Arimidex. He said there is a new drug to prevent bc recurrence, I thought he said something like Previra, but googled it and can’t find anything. Does anyone know of this drug?
Has anyone else had bone pain that eased when stopping Arimidex? I am a little concerned about stopping it, but figure that as I have taken it for 4 yrs I should be okay. The pain stops me sleeping properly - wake every 2 hours, turn over to stop it, then it starts again after another 2 hours. Oh, how I long for an uninterrupted night’s sleep, feel so tired.
Liz.
Hi Liz I have just read your post and I can relate to you I am also suffering terrible back pain I have been on Arimadex since last July and the pain is now worse than ever. I also am having trouble sleeping. I am living on pain killers at the moment. I like you am so afraid to stop the tablets. I had a bone scan as well I had slight thining of the bones so dont know if maybe thats what causing the pain. I am going to have to go and see someone about it as it is getting worse and there is also the thought at the back of my mind that it spread I think thats why I havent gone to the dactor before. I do feel really well apart from this terrible backache I will go this week as I am on holiday from work and will let you know how I get on Take Care Linda xxx
Many thanks for your reply Linda - thought I was being a bit of a hypochrondiac, but I rarely see my GP so he knows I don’t fuss about nothing. I am on weekly self injections of chemo (methotrexate) but he said this does not cause joint pains. I did ask him should I change to Aromasin and he said the side effects will be similar. I asked why Arimidex seem to cause bone pains and he said even if you talked to the drug mnfrs they wouldn’t know! I have stopped the Arimidex as of yesterday so will see how I get on. My gastro wrote to me last year when I mentioned the hip pain and he said I should have an orthopaedic assessment, but my GP didn’t get copied on the letter. If the pain doesn’t go after stopping Arimidex think I had better get bolshy and ask to see an orthopaedic surgeon. My bc surgeon, at my 5 yrly review in January referred me to a Professor of Endocrinology as he was concerned at my bone loss and joint pains. The Prof wrote and said I should continue on Arimidex and Alendronic Acid with Calcichew/Vit.D, but he isn’t the one suffering the pain and sleepless nights is he? Good luck with your doctor - I’ll be interested to learn what he/she says.
Liz.
hi ladies just briefly to your comments, i have been on arimidex a year only but i have pains too my arms are the worst of all from my finger tips up to my elbows and sleepless nights too.
Hi ladies
This will probably seem like a daft question, but what sort of pain are you getting?
I’ve been taking Arimidex now since Dec 07 and am having terrible pain in my knee(site of an old injury!)
The pain is similar to burning. I honestly can’t work out if it’s bone or muscle pain. But pain killers and anti inflammatories are having no effect and the next resort is morphine patches and accupuncture. sleep is nigh on impossible and I limp , not walk.going upstairs only when absolutely necessary, this is really getting me down. I seem to have become a fixture at the doctor’s. has anyone else experienced this and if so do you have any suggestions?
Marcos
Hi
I have all the symptons described above. I have been on Arimidex for exactly one year and the pains and aches in my joints are awful. Wake up in the night every two hours and in the morning have to stretch like a pussy cat before I can try to stand up. It is an all over ache and I also think that my finger joints are swelling up as sometimes my wedding ring is difficult to move over the joint. I haven’t been to my GP but did mention at my Onc appt in Feb and she just said to try and keep taking. I occasionally take Ibuprofen which seems to help and I have also noticed when could and wet it is far worse. Oh joy
Take care
Suzieb
I have various pains - pain in my left hip is like a stabbing knife. It is worse when I sit down and put my feet up on a stool, and when I am in bed. The pain stops when I get up and stretch, or turn over in bed, only to come back 2 hours later.
The pain in my left knee is more like a stiffness, as if I can’t properly bend it to walk. Pain in my left heel - painful to walk at all at times, so I tend to walk on my left toes! Hands and wrists are awful, with knotty, swollen joints on index and middle fingers. Pain goes from my thumb to index fingers and shooting pains down the middle fingers. The affected fingers hurt as if bruised when I touch anything. Guess I should have spelled this out for the GP and he would have been more sympathetic. I have been dx via a bone scan last year,with osteo arthritis in both hips, hands and feet, so this may be the cause rather than the side effects of Arimidex. Won’t know until I have stopped the Arimidex for 3 weeks and the drug is out of my system. Perhaps it is a process of elimination. If the pain doesn’t go away then, I am going to ask for an orthopaedic assessment, which my gastro suggested I should have last year, but the GP didn’t get copied. on his letter to me. I am determined to alleviate the pains as they are really affecting my quality of life.
Liz.
oh how i can relate to all your postings,im on arimadex and have been sice 2007 and the pain in my joints is horrendous some days .i think people think im putting it on when i start hobbling ,but its really painful to walk some days ,i did mention it to my oncologist and she said its a common side effect of the drug,so im putting up with the pain .seem to live on ibuprofin find a hot water bottle helps on the really painful sites . lynn x
Hi ladies
I’m hobbling like an old woman and have just had hip and knee x rays to check for osteo-arthritis or secondaries, which totally freaked me out! I spent most of last night in tears after I’d read the x ray request. But i’m gonna be positive. it’s just hard when the knee pain wont stop. My GP has been great though and has referred me for acupuncture and has even suggested morphine patches. Have any of you tried them? Do they work? I’m taking Tramadol and Volterol at present, but the relief is very patchy.My knee is quite stiff too although that eases up when I’ve walked around for a while. Am also getting some impaired feeling in the fingertips of my bad side, but do have some lymphodoema, so I expect that’s why…
Anyway enough whingeing, hope you all have a good night
Marcos
Hi all Ive been to see my BC nurse yesterday for a new stick on prosthesis its just fantastic I also mentioned about the very bad pains I have in my back I do believe they are caused by me taking Arimadex. She went away and had a word with the onc as he was doing a clinic there yesterday so I was in luck. She came back with a prescription for me so I got the tablets straight away at the hospital. They are antiflametarys and this is the first day I have been pain free for 6 months I feel like a different person today. They are called Diclofenac Sodium 25mg and they have worked a treat I have only taken 2 this morning and I am still pain free I will take another 2 tonight before bed time. I do hope this has been some help to you all who is suffering because I was getting to the stage where I couldnt cope with the pain anymore.I was really thinking about stopping taking the Arimadex but was so scared about stopping them.I couldnt even do any housework as I couldnt concentrate on anything because of the pain in my back. Good Luck to you all Love Linda xxxx
Hi linbob,
so pleased to hear your spinal pains have diminished…but anti-inflammatories will only mask the pain and I would respectfully suggest you get a proper diagnosis as to what is causing your pain. Ask your docs to do a bone scan and a DEXA scan (both different scans) to find out what is causing the pain. It may just be arthritis, and nothing to really worry about, compared to bone mets. This may put your mind at ease.
Take care,
Liz.
Hi Liz Thanks for your reply I am having a scan in July as that is when I go back to the hospital. I still feel a lot better but I know this will have to be checked out. I did have a scan when I started Arimadex and they said I had slight thinning of the bonesI told my onc in January about the pain and he offered to change me onto another type of tablets but he did say that they all had side effects. I didnt change because I dont get any flushes on the Arimadex so I suppose thats one good thing and thats why he is seeing me in July instead of next January.I know you are right I will have to get it checked out as I cant go about like this for the next 5 years.I think I am hopeing it will just go away. I am back at work full time now and my life is so good at the moment apart from this back pain.I will let you know how I get on thanks for your reply Love Linda xxxxxx
Hi Linda,
Hope things go well for you in July.
Are you on a bisposphonate and calcium tablets? After a DEXA bone scan last year (my 3rd in 5 yrs, due to steroids for Crohn’s) my bc surgeon said my bone density had become worse - due to Arimidex. He put me on Alendronic Acid (1 tablet weekly) and Calcichew/Vit.D3 twice daily. This is to strengthen the bones, stop the bone loss and hopefully prevent fractures. I had fractures in both feet last year, so am concerned about a hip fracture, as that is where most of my pain is. I am one week now without Arimidex and the pain hasn’t reduced, but GP said to give it 3-4 weeks and if it is Arimidex, will refer me to an Onc for different meds.
Take care,
Liz.
This is depressing reading - I started Arimidex a month ago and increasingly find I am stiff after resting, my hands are tingly and feel numb in the mornings and the soles of my feet are really painful.
I am great one for walking, and walk the dog for four hours a day amnd also horse ride but I am starting to wonder whether I will be able to continue with that.
I think some of you ladies who have stuck it out for months or years are incredibly brave so I will try and stick with it a bit longer! Am taking a proprietary Vit D/Calc/Vit K but perhaps will ask my onc for a prescription Vit D.
Hi All,
Just thought I’d give my account also of Arimadex-I’ve been on it since January and have experienced bad knee/foot pain and stiffness of he legs-especially in the mornings.Again my knees seem stiff and unable to bend-some days they are better than others.My GP sent me for an x ray which indicated onset of arthritis-but as I said to him before all this treatment I was fit and active-could run a mile and swim a mile and exercised daily.Anyway I reluctantly started to take anti inflams but didn’t like the sound of taking them long term.I asked my oncologist on my last visit and he said it is a major side effect of arimidex which will heighten any pain you already have -ie if you have a little ache in your foot it is intensified by arimidex.I asked if any homeopathic remedies would help and he said nothing had been proven but I could try.I had read about devils claw-a homeopathic remedy for arthritis on the net and have been on them now for 2 weeks.It hasn’t cured my aches and pains but they are much better.I have also started to swim which makes my joints feel more supple.I’m hopefully going to start to use the gym again soon…I do think the devils claw is better than anti inflams I was taking.
Hi ladies,
Thought I’d update with some good news. Got my x ray results yesterday and my knee pain is due to arthritis not secondaries. However had to go back today for a lateral hip xray as there was something suspicious on my hip. Again they were looking for the dreaded secondaries, but the different angle showed that what might be a secondary was in actual fact gas in my bowel and I have a linguinal?? hernia. never was I so relieved.Still have the knee pain and am still hobbling but am happy. What a rollercoaster this week has been.
Marcos
Hi Liz I am not on calcium or any other thing but I will mention this when I go in July I still have the back pain its starting now to get me down. My husband asked me yesterday why I am so grumpy all the time well as you can imagine he got a right mouthful. I am seriously now thinking about coming off these tablets.I cant go on like this. I feel like 90 instead of 49 I have been on a weeks holiday from work this week and done nothing all because of this bloody pain.I have taken 4 pain killers today already I am going to see now if I can get an appointment sooner than July as I dont think I can wait that long. I spoke to a lady the other day who took herself of these tablets and she did tell me all the pain has gone. What do we do live with the pain or stop the tablets and worry if it will come back What a decision ehh O i better go as I am moaning again You Take Care Love Linda xxx
Hi Linda - yes, it is a very difficult decision whether to stop Arimidex, which is why I initially posted, to see if the pain diminishes, or goes away after stopping it. Although there has been a lot of response to my post, for which I am appreciative, no-one has posted that their pain stopped,how long it took and what was prescribed instead of Arimidex to prevent a recurrence.
I have had just over 4 yrs on this drug, so hopefully I will have got the protection I need. My current concern is that the Endocrinologist I saw in late February wrote and said I should continue with both Arimidex and Alendronic Acid. He is concerned over the 30+ years of steroids, more so I think than the Arimidex, and the fact my late mother had serious osteoporosis. I think when my 3 weeks off the tablets are up I am going to ask my GP for a referral to an Oncologist for proper advice. My Onc discharged me after chemo and rads in 2004 and retired last year, so I don’t currently have one.
Do you have a bc nurse who can help you get a quicker appnt than July? I found mine (retired in Dec last) exceptionally helpful. I only had to ring her and she got me an appt with the Consultant surgeon right away, no waiting around.
We have to be our own best advocate I have found…but help is there if we need it.
Take care,
Liz.
I have been on Arimidex for 10 mths and am really suffering with joint pain. After 6 mths came of it for 3 wks because of joint pain in hands (I have it everywhere else too but am an artist and got myself quite depressed over this outcome). There was no change so was advised to go back on. I also take glucosamine which I think was beginning to help a bit, but about a month ago I ran out and was off it for a week. The pain and stiffness returned big style and has not eased off again. I am so fed up, I look like a geriatric when getting up out of my seat and I’m only 49!
On top of all this, I also now have a knee problem, swollen like a balloon, don’t know why or how!
Any ideas to help would be great. I also take Bonefos, Ibrufen and cod liver oil.
Hi Irene,
I have arthritis in my knee, aggravated by the Arimidex, (actually the arthritis has only started since I began taking the Arimidex.) Have finally got the pain under control, my doc has prescribed diclofenac 50mg 3 times a day, 150mg tramadol every morning and evening, glucosamine and chondroitin , 3 a day. I get the glucosamine on prescription! I also take Adcal twice a day. I rattle! but it seems to be working. Have you tried any of these?
Hope this is of help
Margaret