Hi - not posted on here for a while, but thought there might be someone else who is suffering the side effects I am, which I think are down to the Arimadex.
Diagnosed with carpal tunnel syndrome in both hands about 3 months ago. Right hand operated on four weeks ago, but now worse than ever pain in my thumb - have had to put splint on again. Read on another site someone developed d’Quervain’s in her thumb after carpal tunnel surgery - she was also taking Arimadex.
Hands are not the only place I have awful aches and pains. Can hardly walk on my feet as they’re so painful when I get up. Knees also very painful, find it hard to walk up steps. Hot flushes not too bad - have learnt to live with them and some days they are less than others.
2 stone weight gain in last 18 months. Just don’t know how much longer I can tolerate all of these side effects. Following with interest the thread about changing arimadex, or having a break from it. Just wondered if anyone else had same combination of aches and pains, etc.
hi Daisies, i am also on arimidex, my gps don’t seem to worry about any side effects i get, i can’t use my hands upon waking, and like you i suffer horrendously with the pain in all my joints, i have to crab walk down the stairs in the morning, i have also developed high bp that seems to be getting ignored as well! my surgeon has told my gp that changing to aromasin is an option, but until my gp gets a letter off the surgeon saying that i can change then they won’t change me! wonder if that is because aromasin is £20 a month dearer than arimidex??? hey the price of pain! even though i pay for my prescriptions!
Alisonxxx
My GP is very dismissive of side effects caused my Arimidex too…haven’t had my BP taken since I have been on it and that’s 14 months. EEk!! I’m off for my annual bone density scan this morning to see if ant damage has been done to me bones…by the way, I had to chase the scan up because I was forgotten somehow. ‘Slipped through the net’…must be a mighty big hole in that net me thinks…
seems a lot of us are slipping through the net Sheana, took me six months to get a chest xray even though i had mentioned the chest pain, feels like all i do is hit my head against a brick wall!
hope the bone density scan goes well for youx
Alisonxxx
Thanks for your comments. Really don’t know what to to, think I’ll go to see my gp next week, see what he suggests. Although went a few weeks ago with symptoms and basically he just said that there wasn’t anything he could do or give me. Another thing I’ll have to check out is a bone density scan, no-one has mentioned the possibility of me having one at all, and am 2 years post diagnosis, been on arimadex about 8 months, and tamoxifen a year before that.
Hi Jean, i think you need to contact your bc nurse, it was my surgeon who picked up on the fact that i hadn’t had a bone density scan, it only takes a few minutes to do one, and there is no discomfort at all, and its used as a marker to see how your bones cope with the aromataise inhibitors, i really think you need to chase this up. they can’t give you anything for the joint ache if you have it, except painkillers, but i take Adcal and the highest dose of glucosamine, not sure if it has helped or not, but i take them just to keep my calcium levels up, also i think its wise to have you bp tested, i had never had high bp before this, they still don’t know whats causing that and don’t seem too keen to explore that avenue.
Alisonxxx
Hi Jean,
I have been on Arimidex for 4 yrs, but stopped it about 2 months ago after seeing my GP about hip,feet and hand pain. I was walking on the toes of my left foot as my heel was too painful to put on the floor. The pains stopped completely within a month. He prescribed Aromasin after writing to an Oncologist for advice (I haven’t seen mine since finishing chemo and rads and he retired anyway last December.) I took aromasin for only one week and the joint/bone pains came back so I am not taking anything now for bc.
I wanted a referral to the Oncologist as I have also had to stop the bisphosphonate alendronic acid as I have just been diagnosed with oesophpagitis via gastroscopy. My gastro said it is impossible to know if the bisphosph caused it, but the majority of patients taking them do get gastric problems. I am being referred to a Professor of Endocrinology to see if he will prescribe a second line therapy for bone density loss, my gastro has suggested a drug called teriparetide, which is given as an infusion directly into the bloodstream and should not affect my oesophagus. I went to see this Professor last Feb, referred by my bc surgeon, as the Prof is doing research into Arimidex side effects. He told me just to continue with my bc adjuvant drugs, but the pain was so bad, my quality of life was seriously affected. It sounds as if yours is. The Oncologist initially wrote to my GP saying it would be okay for me to stop an Aromatose Inhibitor (Arimidex) as I had had 4 yrs protection as there is no research on using it for 5 years. Talk about “patient heal thyself”, eh?
I am going to ask the Prof if there is anything other than Arimidex and Aromasin that I can try.
Hi Liz, just out of curiosity, my old onc retired in December as well, i just wonder where you were treated
Alisonxxx
ps, could you not go back onto tamoxifen? i was told that was an option for me, but after already being on it and finding the side effects horrendous, well, thats why i am on what i am on now
My specialist told me when giving me my first perscription for Femara that sometimes women get terrible pain in hands/writs - she said if this happened to me they would give me some different pills.
Could you not ask to try a different AI ?
My God there does seem to be alot of slipping through the net going on! I finished chemo on 26th March and nearly 4 months later I queried if I ought to be on tablets. The breast clinic confirmed I should have been on them when I finished chemo and “must have slipped through the net”. I’ve been on Arimidex for nearly 2 week so I’m a bit of a novice.
Can’t say I’ve had any really bad side effects. Have noticed I keep getting pins and needles in my fingers and I’m really clumsy when it comes to picking things up. I can drop stuff but can’t hold onto it.
It’s been very interesting reading your comments. How long was it before you experienced the aches and pains???
Hi Lynda, with me it was when i was started on tamoxifen, then it got worse on zoladex, then it got really bad after 7 months of armidex, now i am on aromasin, and i don’t know whats what anymore! mind you, i never could take the pill!!!
Alisonxxxx
hi i so agree with you all on the horid side effects that arimadex causes, myself its a nightmare to walk some times and my fingers are stiff and yes i dropped a pan of hot stuff on myself as combined with this i also have lymphodemia in left arm and hand .also get the trembles ,anyone else experienced this ? ive been on arimadex for around 18 mnths now and really ive forgotten just what life was like before ,.maybe quality of life before quantitiy ? who knows ,but i will percivere a bit longer as i have liver secondaries and am having another scan in august . maybe we should lobby for greater knowledge on what side effects thesee drugs have .lynn x
just logged in to check if anyone else is suffering on arimidex…hands are stiff and painful evry morning, takes a n hour or so to improve to tolerable. Knees & back also come and go. I get the impression changing aromatase inhibitors is just like changing deck chairs on the titanic, the bottom line is that the TOTAL suppression of all our oestrogen is the basic cause. I was hoping for some wonderful tips!! Like many of you, I had to approach my GP on my own initiative to get aromatase prescribed and nobody has said anything to me about a bone density scan (I’m 56). Feel like stopping the pills if it gets any worse. Have a sore swelling on the inside of my wrist, is this the beginning of carpal tunnel?
Oh joy! thinking about the rest of you, Zoe xxx
Zoe - you’ve said it - the total suppression of all our oestrogen. I’ve been on Arimidex for 16 months and have hot flushes which seems to me to vary in quantity on a semi cyclical basis although my onc says this is not possible. I also get knee and back pain that comes and goes and my fingers are swollen when I wake up and I also get pins and needles in my fingers in the mornings. I had one bone density scan before starting Arimidex ordered by my surgeon but my onc has never mentioned another and I think they should be annual before the damage is too great. I first had BC 18 years ago when I suffered with Tamoxifen for 3 years, then a recurrence last year. The Arimidex flushes are not as bad as Tamoxifen and one comes to accept them as part of life which I suppose is all you can do even though I absolutely hate them. Its tough and I wish my husband understood how it is to always live with a cloud in the background.
I have been on letrozole, another aromatase inhibitor for 6 years for secondary cancer and I have had pain in my shoulders, wrists, knees and ankle joints for quite a few years years. I am certain that it is related to the total lack of oestrogen and have terrified myself on the net looking at recent research projects into why aromatase inhibitors cause pain. Unfortunately it would seem we are sort of guinea pigs cos nobody really knows the longterm effects of these drugs and what they are doing to our bodies and there are not that many people who have been on them for long periods to check them out properly.
I don’t have any choice in taking them cos I have secondary cancer and as they have proved really effective for me, I don’t really want to stop taking them and my oncologist admits she doesn’t know how long to prescribe them for. in a way I think it must be worse for you who have the choice as nobody seems to know the parameters at the moment.
Will go and another glass of wine now!
Take care.
Wendy x
It must so difficult for you primary breast cancer patients to decide when to come off the drugs and I honestly think the oncologists don’t know either.
Just logged on after being absent for a few days. It really does seem that we are guinea pigs doesn’t it, as no-one really knows the full extent of the side effects of AI’s do they? I have also terrified myself by looking on the internet for the side effects of various drugs mentioned to combat the pains, only to find that the lists of side effects seem worse than Arimadex Alison - thanks for for your advice about contacting bc nurse re bone scan, will do that next week I think.
Am with you Wendy and off for another glass of wine - it seems to be the only thing that keeps me going these days! Thanks for all your comments and hope you all have a good weekend.