I didn’t want to start a new thread, but couldn’t find the last one.
Well, I’m off to GP’s on Thursday,( I have been once since dx in Oct
2006 so I don’t think I’m making a nuiscance of myself) I really can’t stand this anymore.
I am in constant pain. From my waist down.
I was so ok on tamoxifen!
I can bend down, but can’t get up. Walking upstairs hurts.I sit down I can’t get up!I feel like I’m 80.My bones hurt so much!
Maybe it’s nothing to do with Aromasin, (nic holds arms out) I don’t know. Maybe its because onc put me on them and I am NOT thru the menopause(which I told him) .All I know is I still have months of Tamoxifen upstairs, and after Thurs I’m taking it again!
I hate going to the drs.I will practice what I am going to say to him a hundred times, but I know it will come out all wrong!
The good news is I like my GP, he referred me back when hospital said I was clear…they were wrong! So he saved my life xx
Deep breath, stop getting in a state, sorry,
but I know you understand where I’m at xxx
Thanks, feel better now, getting that off my chest so to speak.
Thanks for listening
Love Kay xxx
so know how you feel ,ive been swopped from arimadex to aromasin because of severe joint pains and to tell you the truth there isnt any change at all ,i like you, have terrible pains on moving and feel like an old lady ,going up stairs is torture and walking well i just dont do a lot of that anymore ,i do try to get out but the pains are just not worth it . i know i could come off it but was not recommended i did ,as i have liver secondaries and this seems to be keeping everythng stable ,so its a question of put up with the pains or go down hill fast ,sometimes i wonder why as i feel worse on this medication and want my life as it was back again !please talk to your gp maybe pain relief will help you . take care .lynn
i also had severe joint pain with arimadex i was only on it for 3 weeks and like you say i walked like an 80 year old lady, this culminated with my hips giving way while walking downstairs and i fell luckily only down the last few but it could have been worse! i spoke to my onc who changed me to letrozole which so far seems ok i have a few aches but nothing as severe as with arimadex its early days yet so ill wiat and see.
Hello, thank goodness that I have found others suffering the same effects from Arimidex. I too feel like I’ve aged to geriatric status. My Mother is 87 and she shows me up, she can walk miles and I struggle just to walk down a little lane. My doc says I must loose weight, how the heck can I do that when I can’t walk anywhere and getting out of the car, well, I grunt and groan like my old granny used to.
Worst of all are my hands and wrists… I really have trouble using my cooking pans now and lifting anything and I cannot stand anything warm to touch. Can anyone tell me is this the Arimidex or still the after effects of chemo… I spoke to my onc and told him how much I hurt and he just said ‘well at least I know that it is working’. My GP has givien me pain medication but by golly I have to take a lot. Family don’t understand just how much pain I have. BUT, if it’s keeping this horrible desease at bay then so be it, at least I’m here.
Thanks for listening. I live in France and at my local hospital there is no-one who speaks english for me to talk with, even the docs and nurses don’t but for treatment they are brilliant. Only thing is they don’t have anyone like Breastcare Nurses and I wish they had.
Thanks again. Naiad
I’m on Arimidex and joints hurt like hell too…I’e just been to docs with wrist pain in particular and he says it’s tendonitis, has given me cream for it and offered an injection next week if no better. haven’t seen this doc in years, and when i said about my joints hurting, he said, well, you know, you’re not getting any younger! This is true…but I’m afraid to ask to change from Arimidex as my surgeon and BCN told me it was the ‘gold standard’ in treatment, but heck, it hurts!
Naiad - Perhaps one of the BCC staff can help. May be worth ringing the helpline.
Have any of you tried Glucosamine Sulphate and Cod Liver Oil? Do you all take calcium?
After a three month stint on Arimidex during the course of last year, I could not tolerate the hateful side effects any more - exactly what all of you above are reporting, with the added feeling of being “spaced out” most of the time.
My onc switched me back on to Tamoxifen - what a relief.
I think I replied on your original thread back in July, I was on Aromasin and was having terrible side effects, I was referred back to the consultant and he changed me to Arimidex which I felt still was no different. In September I had my first period in 2 years (have not had one since) so they thought I was not through the menopause a blood test showed I was so all very confusing.
I was feeling so bad I told the consultant i would rather stop taking them altogether, at 40 I felt 80.
The consultant and oncologist both agreed to put me back on Tamoxifen, this happened in November and I have to say apart from the flushes I feel great!
Hope you get sorted Kay
Thank you Rachel,
If you had a period, to me , you are not through the menopause.So should be on tamoxifen.I am so pleased you are feeling better.
GP sending me for a bone scan, re spine & hips pain.Maybe I will feel better when I get results ( mind over matter)
I see onc at end of April & will deffo ask to go back on tam.
I have read glowing reports about Aromasin, however I think for us ladies who haven’t really reached the end of menopause its side effects are too much to cope with, also we don’t get the protection.We are sort of in limbo land.
I hope you can help. I was switched from Tamoxifen after 2 years (no major side effects, but tiredness, occasional nausea, just not feeling right) to Aromasin which I started on 1st Feb.
That was only Monday and already have dizziness, weird dreams, a bleak mood and irritability. Please tell me it’s not the drug! Has anyone else had such side effects so soon with it?
I too suffered from a day of really black moods and non-stop crying about a week after starting Aromasin. It passed and I have been fine since…well emotionally. The joint pains are another story, I too am really suffering. I would be interested in knowing if there is anybody on Aromasin or any other AI’s who doesn’t suffer from pains, In the accompanying leaflet it says more than 1 in 10, but I’ve yet to speak to anyone who doesn’t suffer from joint pain! Perhaps I will put a post on here and research for myself. They should edit their leaflet if everyone or certainly more than 50% suffer. By more than 1 in 10, they probably actually mean 99%!
I was diagnosed with osteopenia (pre osteoporis at the age of 43!) at the same time as starting Aromasin and was prescribed biophosphorates so I am not entirely sure which one is the culprit for the really achey bones and joints! but I suspect Aromasin.
I am on Letrozole but have only been taking it for three months. I do have stiffness when I get up after sitting for a time but not too bad. I had a few joint twinges at the beginning but they didn’t last long. Maybe I have not been on it long enough to find out but so far, so good.
Thanks for the info, it has cheered me up that the mood was temporary, although I’m sorry to hear you’re suffering so much with the bones aching. I’m sorry to hear about your osteopenia, I imagine that the Aromasin is not helping!
Today has been awful, I have been angry, tearful, dizzy and flying into a rage over nothing! I had a bone density scan before beginning so I’m hoping the joint aches won’t concern me too much but from reports I see that it is a common problem. I guess I will have to wait and see what comes.
I am pleased to hear that you’re not suffering too much Ann, hopefully it’ll not get worse for you.
Glad that your GP is sending you for a bone scan. Good luck for that.
I’m thinking about going to see my GP but don’t want to worry him if my current pain is only Aromasin side effects.
You said that it hurts you to walk upstairs. Can you say where it hurts - as I’ve got something similar. Most of my pain is in my bottom - it feels as it it’s coming from the bony bit one sits on - I’ve had to put a cushion on my computer chair - I do spend a lot of time on here. But when I bend down or walk upstairs the movement causes a pain towards the front of my buttock. Is yours anything like that?
By the way I can’t imagine why they put you on Aromasin if you’re not through the menopause yet.
I was originally on Tamoxifen and due to lots of irregular bleeding they put me on Arimidex and had similar probelms with them. (I have no Ovaries so that was not expected)
I have been on Aromasin for 18 months now and have since been diagnosed with artritis in my left leg (I am 43). More recently I can not sleep and its driving me mad, also I have started having night sweats and the odd flush during the day which I thought had all ended when I stopped taking the Tamoxifen. Has anyone else had this problem?
Its amazing how strong all these tablets are and what they can do to our bodies.
Since starting Aromasin the night flushes especially are back with a vengeance for me too I’m afraid. It’s been about 3 weeks I’ve been on them, so not long. I’m hoping they’ll ease as they did with Tamoxifen.
Also I could barely walk on my left foot for a few days and can’t wear proper shoes (was out in torrential rain in flat pumps yesterday, got drenched!). I’m seeing the doctor on Friday as I have had to register with a new one, so I’ll see what they say about it.
So sorry that you are having these problems.
I’ve been on Aromasin for two and a half years, and about 18 months ago had loads of pain in my foot. My GP reassured me that it was just Aromasin side effects - there are loads of joints in the foot and this medication is known to cause joint pains. The GP also did a blood test and bone X-ray and nothing was found. My foot still hurts intermittently but is OK - sometimes for several weeks - so I’ve stopped worrying about it.
That’s great news, thanks for the reassurance. I will mention it to the doctor but I’m sure it’s as you say a side effect and hopefully won’t cause lasting damage
Thanks Cecelia I hope you get on ok at the doctors
well had my bone scan and everything was fine , (huge sigh of relief)
My Gp phoned the very next day with the results, wasn’t that good of him :). He said no sign of mets,arthritic condition in knee and “just general wear and tear”.
I wonder if it causes arthritis,as Paula has same…
Funny thing is, since visiting Gp. pain has almost gone… Now, at first I never thought of mets, just put it down to Aromasin, until something I heard alerted me to mets. So I can’t see how its pschologigal (sp) but does make me wonder.
Anthi, no my pain was in my knee and deep inside my hip bones.
So the outcome is , I’m ok, and plodding on with Aromasin.Not getting much sleep due to being hot all night,liked tamoxifen better,but the results favour changing to Aromasin.
If any of you have any concerns about wasting GPs time… don’t.
My Gp was great, no umming and ahing. I told him I’d been in pain for 3 months and was worried, he said straight away, ok, we will send you for a scan.I keep feeling, ee ba gum (dialect) I’ve wasted so much money by getting a scan, then I think No! I was worried and now I’m not!
I hope everyone elses pains go soon, maybe it takes months to get used to it?