I have been taking exemestane for over a year, my join pain has got continuously worse, the main joint pain is in my knees, feet and inside of elbows.

i am active but when I sit down In the evening, I have job getting up feel like 90. Also if i’m Travelling, especially on a train for 3 hours, when getting off the train it is painful but climbing the stair to the bridge and down the other side is crippling, just the thought makes me wince.

i went to the cinema watched the film, afterwards was really embarrassed as I could not walk down the stairs unsupported.

This weekend danced all night long at a festival, I was fine. The pain sets in when sitting down for a period of time but you can’t be active all the time.

started taking ibuprofen but seriously considering coming off exemestane, as the pain is intense.

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 ladies as you know I'm in the same boat as you two with the pain. I haven't noticed any advantage to using glucosamine as yet but am trying to be optimistic that one day I'll wake up quite sprightly in the morning Lol.   I was wondering do you know if there is any help financially?  I work partime at home at the moment but I'm not sure how long I can go on for. I work as an accounts clerk but sitting and using the mouse and keyboard can become quite painful during and afterwards.  I'm not sure what else I could work at with the pain ????   What do you know ?   Don't forget to wear pink this Friday as well  x

Hi WelshSquirrel, Justanne, Lovemydog and Moonpuddle,

I thought that you might all find it helpful to hear of the longer term outcome with these drugs. I have had 2 bouts of breast cancer in the past 11 years. Intially, I had a lumpectomy followed by Tamoxifen. I found a second lump a year later and had a double mastectomy, followed by Letrozole for 6 years.

I had terrible night sweats with Tamoxifen as well as weight gain and insomnia but worst of all were my emotions. I was constantly crying, which was totally out of character for me.

When I changed to Letrozole my emotional state improved but my arthritis gave me a lot of trouble, to the extent that I had to have both knees replaced. I stopped taking this in July 2017, but still have trouble with all of my joints. I also had eyesight complications which has resulted in 5 eye operations and I am currently waiting for another 2. I developed lymphoedema in both arms and now wear elasticated sleeves on both arms all the time. I attend a lymphoedema clinic twice a week for two weeks every 12 weeks. Here I get manual lymphatic drainage and am physically bandaged from shoulder to fingertip in layers of compression bandage and,I come out looking like the Michelin Man (especially with all the weight I've gained). These are just some of my legacies from Letrozole, but I would certainly take it again, as I am still here and leading a full life 11 years on.

All cancer treatments have side-effects, but we have to weigh up the gain. There are times when I felt like giving up, but I'm glad now that I perservered.

There are things that can be done to help combat the side-effects. For night sweats, I was prescribed Clonidine, which didn't work for me. I was then prescribed Venlafaxine, a mild anti-depressant and, this did greatly reduce the sweating. Using a particular make of a drug can help too. Discuss this with your breast care nurses.

There is no way of telling whether or not people will suffer side-effects. Some people sail through with none, whilst others have a really hard time. It is very much an individual thing and, if treatment is really unbearable, talk to your breast care nurses, as they can alway suggest 'way rounds' to these challenges.

I do hope that you all manage to see your treatments through and remain with us for a very long time still.

Kind regards,

Jolamine xx