I am having fluid in knees and also my rotator cuff in both shoulders is giving me problems too. I have been on these before meaning the Letrozole and it got me to where I could not walk well I maybe in a wheelchair with this. I contacted my oncologist so we will see what she says.
Anyone else having these problems too?
it’s been years since I took letrozole. It made me wake up with joints and muscles so stiff. When I switched to faslodex and Ibrance all pain went away
Same thing happens to me, I am on Kisqali and letrozole. Joint and muscle pain are bad until I take prednisone, which makes me gain weight but it helps me out a lot.
hi Teena, I’m sorry you are having problems. I’ve been on Ibrance and letrozole for 5 years and I, too, am having shoulder problems, both sides. I never made the connection with treatment but you might be on to something. I’ll anxious to see other people’s experience. Meanwhile I hope you feel better soon.
hi - might I ask about the shoulder problems you have. What works best to relieve it- I was advised to do a set of isometric exercises and mobility exercises under water but it didn’t seem to help and the shoulder pain just keeps getting worse. Were you given any advice/exercises?
Maybe your oncologist could switch you to the sister drug Exemestane. I was on Letrozole for 4 years and it gave me cataracts as well as osteopenia. I don't know the side effects from Exemestane which I am currently trying as Letrozole stopped working for me.
Mimi
I was on Letrozole for three years when the bone pain started. I went off it but the pain hasn’t gone away. I’m seeing a rheumatologist and he thinks it has developed into fibromyalgia. He suspects it was from the Letrozole but there’s no proof so I just suffer with it. The pain does seem to lessen throughout the day but it’s back every morning.
ok so today the pain is going away in my knees but still there. Shoulders are easing up too. I took Tylenol arthritis that did help me too ♥️
yes weird that it’s worse in the morning. I might try taking letrazole at different time to see if makes a difference. Don’t know why it would affect arm/shoulder so much (and ankles in your case). Did you have radiotherapy?
hi, I have been on letrezole for 18 months and my shoulders are also causing me so much pain, right side mainly like the rotator cuff too. Also my ankles are also suffering, I can hardly walk when I first wake up. It’s really debilitating so wondering if mine is linked to the drug x
hi - might I ask about the shoulder problems you have. What works best to relieve it- I was advised to do a set of isometric exercises and mobility exercises under water but it didn’t seem to help and the shoulder pain just keeps getting worse. Were you given any advice/exercises?
Hi, I’m still struggling with mine, anything in water aggravates it, so swimming is a no go, mine can run along my collar bone too. Omega 3 and certain foods help, avocados, fish, nuts and seeds. And staying really well hydrated xx
I am trying to figure it out to. I have seen that rest is helping mine I also prop on each side in bed my shoulders up that seems to help. I am taking Tylenol arthritis for now.
I've been on letrozole for 3 years - I too have knee issues, been told I have fibromyalgia, osteopenia and now I'm getting ready for shoulder surgery next week for a torn rotator cuff/ bicep tendon tear. I went to PT for 3 months on the shoulder - it made it worse. I find this thread very interesting with so many of us with the same symptoms. Had none of this prior to BC and the letrozole.
I’m wondering if have we all had radiotherapy too? My surgeon said it was the gift that keeps giving - maybe exacerbated by letrazole?
I had radiation 14 times on my right leg, thats it.
but no radiation for breast. So it sort of rules out radiation as a cause.
I agree it is kinda weird we all have same thing
I had awful joint problems when I was on letrozole!
I’ve been on Ibrance and Letrozole for about 4 years. I fell and injured my left shoulder years ago. My right shoulder bothers me just occasionally. I have a whole body nuclear scan every 3-4 months. Mostly, shows arthritis in my shoulders. I have metastatic breast cancer to my bones. I have no knee pain. I just chalk up any aches and pains to the MBC.
yes I am thinking I have osteoarthritis so I am thinking it is doing it plus medicine is not helping it but I am going to try and see if I can control it I am not sure though.
Hi. I have had terrible problems with my hands fingers, and wrists, and other parts of my body, with Letrozole. And now that I’ve been put on to Anastrozole, a cousin of Letrozole, it’s a little bit better. But really, now I just have come to the conclusion that it’s saving my life, (albeit not the greatest quality of life) but it is still worth it for me.
I guess we all have to weigh up what is the point where our quality of life is not great enough to keep going with the line of treatment we’re on.
You poor thing.
It’s just so frustrating, I’m lacking words, boarding on horrific, what some of us have to put up with to stay alive! Good luck with your decisions.
thank you so much and you are right. I have discussed with my family that lives with me about it for now I am going to see what I can do with it.
Almost 9 yrs ago I was dx'd Metastatic, Letrozole was my first line treatment and I can still remember that horrible joint pain! I think it causes some type of drying out of the usual fluid in our joints.
I think you are right cause I feel it dries out and hard for me to move I already have lesions on hips but they are not as bad as my knees it is crazy
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