Did you have and how do you manage Letrozole side effects?

Posted by nana3131 @nana3131, Mar 13, 2023

I’m going to start Letrozole in few days. Want to know what side effect and if it go away after awhile . Thank you.

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I tried Letrozole for a few months but found all the joint pain and other side effects very difficult. Took a break, symptoms got slightly better. Started another AI same problems. I decided after a year of these drugs to stop them.
Most of the joint pain went away except in my knees. I went off drug in December but still have great difficulties getting up from a chair, going up or down stairs etc. I also have one knee that collapses my leg.
I'm now going in for an MRI on my knee/leg and lower back. I'm seeing a new doctor who I hope will help me.
I would try Tamoxifen but I still have my lady parts and it would require an internal sonogram at the gyn office every few months.
I just try to take each new thing one at a time.

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@jenyu

I've taken Letrozole over 8 months. From the 2nd month, I also took Xgeva injection. One of my back teeth started pain. The dentist said the bone of the teeth lost 70%. I was told both letrozole and Xgeva may have side effects of osteoporosis. I'm taking calcium supplement and Vitamin D. My teeth does not hurt so much as before.

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Oh my god. I have the same symptom as you: back teeth pain since 70% bone lost after I started Letrozole and Xgeva for a month. I am also taking calcium and VD. They help. One more thing I do is spreading some salt on toothpaste when I brush my teeth. That helps also to relieve the teeth pain and reduce the risk of infection due to osteoporosis on teeth.
Do you usually take Xgeva monthly or quarterly or semi-yearly?

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Letrozole & association with Dementia I found this vrry worrying.
I took Tamoxifen & within days could barely function, exhaustion off the scales over the the following days & my cognition was affected so badly. I found everything a chore body aching & brain & memory so slowed down.
I eventually stopped it switched to Letrozole which was s bit better I lasted a few months & then was switched again, trying Anastrazole & Estamane neither improved my symptoms. I had a break of just over 2 wks & within days went back to my old self...aches & pains went & fatigue improved & brain felt normal.
I decided to try Letrozole again this time the branded Femora.
Low & behold it was OK still the side effects but tolerable, then after 6m9nths it changed & progressively everything got worse.
My pain at 9 months was unbearable my femural pain restricting everything I did back pain as well. Condition was daily getting worse & I had every menopause issue.
Following CT scan & MRI & Dexa & seeing 2 oncologists I with their options decided my quality of life & bone deteriation was so bad I had to decide to stop ALL ALs.
It's taken now over 3 months being med free & I'm still in daily pain & exhausted but my brain & congition has fully returned & my level of pain reduced but still a problem.
Osteoporosis is now an issue but I know 8ve done dhats right for me. I'd rather take the risk of recurance than nit be able to do daily basic things without bring in pain constantly.
I wish we were given ALL the rarer long term side effects as everyone reacts differently to these drugs. In my research I've read numerous papers about Dementia & a link to ALs . All of which is very worrying

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@colleenyoung

Hi @alibee, I’m tagging @nana3131 again to ensure she sees your question to her about Letrozole and her experience with side effects.

Ali, does Letrozole continue to be a better aromatase inhibitor for you? How are you doing?

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My wife just passed several month ago. She had HER2+ Receptor positive carcinoma which metastasized into her hip. Sizable tumor was removed, standard radiation post-surgery. She was on regular infusions of Herceptin and daily doses of Letrozole. She took the Letrozole for nearly eight years. Dealt with daily joint pain, Complete elimination of Libido, cumulative decrease in energy and motivation. Total drying out of the vagina. (Revaree has a suppository product called Bonafide) works fairly well, however.. when the libido is gone, its gone. She started developing eight of the ten symptoms of Dementia approximately 18 months ago. We still don't know for sure if it was the drugs. No family history. She was lucky. Stopped breathing in her sleep prior to not knowing who we were.....

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I've taken Letrozole over 8 months. From the 2nd month, I also took Xgeva injection. One of my back teeth started pain. The dentist said the bone of the teeth lost 70%. I was told both letrozole and Xgeva may have side effects of osteoporosis. I'm taking calcium supplement and Vitamin D. My teeth does not hurt so much as before.

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@celica

I’m going to be in this as well
Any other comments side effects etc
I’ll be in it for 5-10 yrs
And zomex to preserve my bones

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I would like to see more discussion on this topic. I started Letrozole in October 2024 and do experience some muscular and skeletal stiffness and pain. What about Zometa ? I am about to take my second infusion in April. No reaction to the first one six months ago.

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@frantik223

Please let us know- I am about to change to letrozole from Anastrozole and would appreciate hearing your experience

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I was switched to Letrozole 5 weeks ago after experiencing a rash when I started Anastrozole. So far so good for me with Letrozole. I initially had trouble getting to sleep at night, so changed to taking it at bedtime. I get the occasional hot flash and still have trouble with sleep at times, but that’s about it. Hopefully that’s all the side effects I’ll see. Good luck to you!

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@dlmdinia

I started on Letrozole with no issues for 9 months until I began chemo and radiation duing which time I didn't take the medication. After, a different oncologist switched me to Anastrozole. It took awhile, but I began having severe joint pain centered mostly in my knees. I also became aware of the other issues so common as well. After a year, a new oncologist switched me back to Letrozole and I also started collagen supplements which took care of the knee problems which by then almost had me crippled. I've two more years on AI'S and will wait it out while on the Letrozole.

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Thank you for your reply! My oncologist has me taking a 2 week break. All of my pain stopped second day on break. I have 9 more years of AI’s-maybe switching back and forth will be way forward. Best wishes to you!

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@mossa

I have terrible joint pain and difficulty sleeping while on anastrozole last 10 months. Anastrozole put on hold 2 weeks ago while I was started on verzenio. (Wow! That’s another story!)
I think I will be given the option to start letrozole instead of restarting anastrozole. Anyone else with similar situation?

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I started on Letrozole with no issues for 9 months until I began chemo and radiation duing which time I didn't take the medication. After, a different oncologist switched me to Anastrozole. It took awhile, but I began having severe joint pain centered mostly in my knees. I also became aware of the other issues so common as well. After a year, a new oncologist switched me back to Letrozole and I also started collagen supplements which took care of the knee problems which by then almost had me crippled. I've two more years on AI'S and will wait it out while on the Letrozole.

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@nora305

My doctor is having me discontinue letrozole for the next four weeks to see if the muscle pain I have developed in my left leg and left buttock will go away. Long-term back pain is apparently pretty common with letrozole.

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Just wanted to comment on my experience with Letrozole that I wrote about last March 15th. My back pain DID go away when I discontinued letrozole (thank goodness), and my oncologist switched me to anastrozole. I have had much less painful side effects with anastrozole. So if one aromatase inhibitor doesn't work for you, try another. Nobody has to stick with one if it's too difficult. JMHO....

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