No one has replied to my earlier post, so I am trying again in the hope that there is someone who's been on Exemestane. I have continued with the treatment, but the headaches and swollen, painful joints have not abated and I have more or less decided to go back on Tamoxifen. I would still appreciate hearing of other people's experiences. Thanks.

No one has replied to my earlier post, so I am trying again in the hope that there is someone who's been on Exemestane. I have continued with the treatment, but the headaches and swollen, painful joints have not abated and I have more or less decided to go back on Tamoxifen. I would still appreciate hearing of other people's experiences. Thanks.

Hi Grannyatti,

I too am disappointed that no one has replied to your thread, in my opinion this happens all too often but is the way of things today.

I cannot help you with this query other than to say I took Tamoxifen for five years after mastectomy with little or no side effects, I did put on weight but cannot say that it was solely the effects of Tamoxifen.

I sincerely hope that someone comes up with some answers for you. Take care and I wish you well. Rodis.

COME ON MEMBERS THERE MUST BE SOMEONE WITH EXPERIENCE OF THIS DRUG.

hi

I have only just arrived on this post, like you i have been on tamox for 31 months and have now been switched to exemastane i have just completed 4 weeks, i have been put of work for 2 tweeks and another 2 now, the head aches and feeling really grotty was horrible but i am determined to give it my best shot, i do feel i am now starting to come round abit. I did some silly things like driving up a wrong way street , my work has not been very sympathetic which has added to my vulnerability, can you tell me if you are any better now, the aches and pains and flushes i know we have to live with but it has got me down. i do hope all yours have now settled.

Lambie

hi there, i started two years ago on arimidex and struggled to get out of bed all my joints and muscles were affected, put weight on and could hardly walk never known such pain and i have a strong pain threshold, i stuck them for a year on my oncologists advice then he changed me over to exemerstane last xmas and yes all the aches and pains still there but not quite as bad my lymphedema nurse told me to get glucossamine 1500 strength and take them for at least three months as they have been proven to help some people i started on them about 5 weeks ago so hoping they will help eventually, my surgeon said 2 weeks ago when i see the oncologist again which will be next august to ask to go on tamoxifen ive just today received my mamogram results and they are fine after two years. regards sandyxx

I've had mood swings and pain in my legs

Hi

I've been on Exemestane for over 3 years. I had to change to it as Arimadx caused a lot of joint issues in my fingers and knees.

These stopped after I switched, and for a while Exemestane was much better. The pain in my joints was less and I felt almost normal. However, in the last year I've developed very painful shoulders. I now have restricted movement and have had some ultra sound directed steroid injections to try to reduce the inflammation. It doesn't seem to have worked, although it's early days.

I'm thinking of stopping Exemestane for a few months to see if the symptoms ease. I still need to take medication for at least another 3 years, so I will need to return to it, or maybe back to Arimadex to give my shouders time to recover. Maybe I'll ask if I can try Letrozole as they all seem to have different side effects.

Just woke up with a start! Can bearly sit up the pain in my shoulders is getting worse by the day and the pain in my fingers is the same - I can hardly bend them. I started taking letrozole 1st April after completing chemo and radiotherapy but didnt realise the newly started pain in my body was connected to letrozole after talking to my consultant he decided to swop me to Exemestane i went along with the decision but felt it wasnt connected to the letrozole i have now been taking them for nearly 3 weeks and i can bearly walk! It is the tablets! After reading your posts I now know these tablets are the cause of my pain and have decided to ring my consultant to ask for an alternative - i hope there is something that suits me and something can be done - it is early days and i am hopeful because i know i must take them. I am so glad i stumbled across this site - thank you and all the best

Hi everyone, these tablets cause so many problems to our joints, I have clicky shoulders, wrists and now a grinding loud clicking neck along with very achy hips after a night's sleep. I take exemestane and have done for 6 months, I took Letrozole before but the pain in my joints was so severe they changed me. I do feel exemestane isn't quite as bad on my elbows and upper half joints apart from the clicky joints I don't tend to get much achy pains upper half but my lower half, my hips, ankles and tops of my legs just ache terribly after a night's sleep(or a half broken nights sleep) I have googled several options of supplements and I have started to take turmeric and black pepper, glucosamine and omega 3 oil, i'm willing to try anything to feel how I felt before my diagnosis, which was pain free, ache free and physically fit. I'm 46, I was diagnosed at 43 and I feel the last 3 years have been torture with pain in my joints,  lymphodema in my breast after the radiotherapy, it got better when I started the couch to 5k running but now my ankles and hips and feet hurt so much I can't even do that so consequently I have put weight on, I'm going wait a few months for the side effects to ease up and hopefully the supplements will kick in too. I will post on here if anything changes to let you know how I'm getting on. 

If anyone takes anything different or does anything different to ease the pains in their joints it would be very helpful  

Look after yourselves! 

HI  Reading your post its like reading about myself - I could cry   I ventured onto this site as I wanted some advice on the side effects of Exemestane.  I switched from Letrozol in May 2020 as the flushes were driving me mad.  I did experience pain in the soles of my feel, creaky achy knees, hips and in my fingers, these have not improved but the hot flushes have got better. They occur probably once or twice a day compared to almost constantly. Its the weight gain that I am concerned about though. I can walk the dog for approx 20 minutes but the next day I feel it in my joints. Walking, or shall I say stumbling, down the stairs is sometimes is almost intolerable.   I was advised by my GP to try glucosamine which I try to take daily. I wonder have you lost any weight with any of your meds/supplements that you are taking.  My scales have rocketed over the past few months (although I can probably blame the lockdown, like everyone else)  Anyway any advice would be welcome and I here as a sounding board if nothing else.  x

I've been on exemestane for about 6 months now. I had osteoarthritis in a number of joints already - runs in my family-- but my knees and shoulders had always been relatively pain free. Now I'm finding kneeling down to be excruciating as is reaching my arms around, for example to tuck in a top. I am also unable to write more than a couple of sentences before my fingers sieze up. People with cancer in my area usually get a free course of massage / aromatherapy at the local hospice, but of course that's cancelled due to covid-19 restrictions as was physiop after my mastectomy in February. Does anyone have any suggestions about how I could reduce the pain? I am used to living with pain everyday because of my back, but it's getting severe in so many joints now it's getting harder to live with. Mentioned it to the oncologist but though he made a note of it he didn't make any suggestions as to how to live with the pain! 

HI

I have been in Exemestene for 10 months I was okay for the first 4 I had some shoulder pain but not bad. However the last few months have been very difficult walking has become impossible it feels like there is a chain around my middle pulling me back. My knee has become weak and I fell and found it difficult to get up. Any pain I have is tolerable but I have no upper body strength If I am making dinner in drop the utensils. I am going to request a change as quality of life is not good but apprehensive of more side effects