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

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 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

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 there, 

Looking at your post today and just wondered if you ever found anything to ease the pain? I am in exactly the same position as you and would really like some advice on how to manage the pain.  It's crippling and affecting my life so much 

thanks 

Amanda

Hi Amanda, 

I noticed you were hoping to find out if Bumblealong found anything to help with the pain.

Unfortunately, the last time they were on the forum was in July 2020 so there's a chance you may not get a reply.

I really hope that won't be the case, but if you don't hear back, you could try reaching out to others on more active/recent discussions you find about this on the forum. You're also welcome to give our team of cancer nurses a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They are very supportive and will do all they can to help.

I'm sorry this pain is having such a big impact. I can't imagine how difficult it must be to live with this at the moment but I, and the rest of the Cancer Chat community will have our fingers crossed you can find a way to make this more manageable.

Kind regards,

Steph, Cancer Chat Moderator