I have been taking Tamoxifen for 15 months now, it’s mostly been ok, a few symptoms but I have managed to keep going with it. In the last week or so I have noticed increasing swelling / puffiness in my legs… first it was a mild swelling in one of my ankles, then then morning I have woken up to puffy tops of my legs and knees… has anyone else experienced this on tamoxifen?
1 Like
Hi crazypapticorn79
I was on Letrozole from last May and after one week both my legs swelled. I actually ended up in A and E as I had rung 111 for advice and they sent me up there as obviously they thought it may be a DVI.
It was nt though. Thereafter they reduced a little but at night I found it difficult to sleep as my knees downwards used to become very swollen and were quite painful. My BC said I could have a 6 week break in September and it went down a little. Then they said I could take Exestame instead. To be honest I am having the same side effects except my elbow joints are swelling now too!
No one acknowledged that this could be a problem so it’s kind of refreshing to know someone else is having the same issue.
Although of course I wish we did nt have!
I had a reoccurrence of bc and a mascetomy and diep flap in Nov 23 and 4 chemos as a precaution as it had not gone anywhere else so I do feel fortunate and I don’t know if I can put up with the side effects and broken sleep for another 5-10 yrs. I am 75.
1 Like
I noticed I had puffy ankles while on tamoxifen, then looked it up, and yes, it’s one of many symptoms. I’d actually forgotten that one as it didn’t get as bad as what you are experiencing. I stopped the tamoxifen for other reasons than that so I’ll never know how bad it could of got. I’d recommend support stockings as an option, but as its beyond your knees, also take it up with your BCN to see if they can offer suggestions of management.
Yes, I experienced this! One morning as I sat down and glanced at my feet, I didn’t recognize them!! Please contact your team as soon as possible for further information and management. My doctor took me off Tamoxifen ( I had also been on Anastrozole and Letrozole) and I am currently on Raloxifene. Good luck and good health to you.