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Joint pain from Letrozole

Itisfinished profile image
34 Replies

Has anyone had extreme joint, muscle, bone pain from Letrozole? I have been hurting all over and so sore. I talked to my oncology pharmacist and she said Letrozole can definitely do that and if it keeps on we will have to switch to something different. Any advice??

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Itisfinished profile image
Itisfinished
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34 Replies
ANNIE6449 profile image
ANNIE6449

I've never had any back or joint issues of any kind before starting Letrozole. As soon as I started the Letrozole I noticed pain in my back while sleeping! As time went on I would intermittently feel pain in my pelvic area or knee where I had an ACL repair 15 years ago. But I also noticed that once I was up and moving around the pain and stiffness disappeared. My oncology nurse said this is very commonly reported to her from patients on Letrozole - once they are up and moving the pain goes away. I also take several anti-inflammatory supplements regularly and have for many years (high quality turmeric/fish oil/ blueberries/etc)

( I am 67 but I've been an athlete all my adult years so I work out vigorously on a regular basis, but don't know if that makes a difference or not!)

StE72 profile image
StE72

My joint pain has increased over time, it is now affecting my knees, legs, back and now hands. On getting up my joints and muscles are very stiff and painful, once mobile I feel better and stiffness decreases. I have been on Letrozole and Ibrance since June 2018 plus denusomab injection every 4 weeks.My oncologist just accepts it can be a side effect and hasn’t suggested changing anything.

Difficult to know whether a change would be better or worse.

Beryl71 profile image
Beryl71

Sorry to hear that. My experience was the opposite. My pains all disappeared once I started ibrance and letrozole. I've now stopped all pain killers and am keeping my fingers crossed! Good luck.x

Teddielottie profile image
Teddielottie

Have you tried glucosamine? I have been taking a vegan glucosamine pill for over a year and I believe it has helped joint issues caused by Letrozole. x

JustmeMary profile image
JustmeMary

Good Morning - I definitely have joint pain from the Letrazole. I feel like I’ve been hit by a truck every morning or if I sit too long. Moving around helps but moving too much makes it worse. My oncologist has offered pain medication but I don’t feel I’m to that point. I’ll just live with it. My experience with other AI’s has been the same.

Buninga profile image
Buninga

Yes it’s very common. Exercise is a definite lubrication. You’ll still feel joint pain waking up but once you get moving it gets better. . A solid morning walk and stretching really helps.

Topood profile image
Topood

I do find that fish oil helps, whatever medication I’m taking! And I exercise a lot.

Sunny2020 profile image
Sunny2020

Yes really bad in the beginning. Definitely worse if I don't move around. Walking helps. At one point I needed physical therapy to ease it. My body has adjusted some now.

mariootsi profile image
mariootsi

I had terrible joint pain and stiffness on Letrozole.

mariootsi profile image
mariootsi

I found that excercise helped.

R7777 profile image
R7777

Same here, I have been on Letrozole for only 2 months but I am stiff and painful. Only 45, but feel like 90.. I have my 1st bone scan on Monday. I was worried it's the mets.. but you gave me hope it might be just the pill.

Teddielottie profile image
Teddielottie in reply to R7777

Welcome on here and I wish you well on Monday with your bone scan . I have been on Letrozole ( and Ibrance ) for bone mets over three years and the main side effects from Letrozole are stiff joints and hot flushes. I have found taking a daily glucosamine tablet ( which I buy from Boots the chemist - I’m U.K. ) has helped with the stiff joints , and moving around often ( not sitting still for long periods ) . Take care! x

R7777 profile image
R7777 in reply to Teddielottie

Thank you my lovely! Wish you all the best!

Itisfinished profile image
Itisfinished in reply to R7777

Hey R7777 how did your scans go?? I have found that moving around more and staying active seems to help with the joint pain. You see I had spinal surgery back in August due to a tumor crushing 2 of my vertebraes and it was causing awful pain and I was getting to where I couldn't walk. So I have had to learn to walk again so needless to say I haven't been able to jump back into being active. It's been a slow process but I am doing well. I did start claritin and I think it may be truly helping!! You may want to give it a try. Hope all went well with your scans. I just got my 3rd covid test back and its finally negative so I can start back on my ibrance and get my xgeva shot 😁

R7777 profile image
R7777 in reply to Itisfinished

Hiya! Thanks for asking! I dont have the results back yet. My cancer crashed one vertebrae in November. It took a long time to diagnose. CT didnt show metastasies. I was in agony. 3x in A&E. they finally decided to do the bone scan.

Which proved mets on 3 places. I didnt have surgery but 1 big blast of radiation to the worst part of my spine and it did the trick!!! Yay! The pain was after few weeks gone! Amazing.

Is Claritin for the pain?

Intersting about Covid/ Ibrance.. I live in the Uk. No one said I should stop it if I catch Covid..

Had my vaccine and didnt stop it either.

Itisfinished profile image
Itisfinished in reply to R7777

Yes Claritin is for the pain. Well the reason my oncologist wanted me to get off ibrance ls because my WBC was down really low which could of caused all kinds of things to happen with the covid. I continued to take my Letrozole. I got my scans and ct done after I stopped having symptoms and my bones were stable and my ct was clear. My tumor markers dropped drastically so I am so very thankful!

R7777 profile image
R7777 in reply to Itisfinished

Happy things are stable now for you! I dont think my oncologist is checking my markets.. which part of the world do you live?

Itisfinished profile image
Itisfinished in reply to R7777

I live in South Carolina!!

R7777 profile image
R7777 in reply to Itisfinished

Nice! I'm in the UK. How often do you get checked for markers?

Itisfinished profile image
Itisfinished in reply to R7777

He checks them every 3 months when I get my scans done.

R7777 profile image
R7777 in reply to Itisfinished

Thats handy. I just had my first 3 months so will ask for it! Thanks! Thats useful. Are you on Ibrance Letrazol combo?

Itisfinished profile image
Itisfinished in reply to R7777

Yes and xgeva shots

R7777 profile image
R7777 in reply to Itisfinished

Same here! How long have you been on it?

Itisfinished profile image
Itisfinished in reply to R7777

Letrozole since August. Ibrance I have had to get off of because of covid but now that I finally tested negative I will be starting on cycle 4 today. I am suppose to have a shot monthly however its been2 months so March 23rd I will get a shot.

Dragonfly2 profile image
Dragonfly2 in reply to Itisfinished

Hello! Yes, the aromatase inhibitors are tough on joints and tendons...but the WBC problems with Ibrance are another problem. If you an restart your Ibrance in the future, please ask you ONC about taking it on a 5 day on/2 day off schedule. this really makes a difference in the WBC...its been working for me for 3 months now...hope this helps!

Enie profile image
Enie

After three years on Letrozole I am experiencing what your going through. My oncologist took me off it two weeks ago but I’m still suffering the side effects. I’m wondering if your doctor took you off it how long it took for the joint pain to go away. Thanks

Enie profile image
Enie

was on Letrozole for three years before the bone pain started. I’ve been off it for five weeks now and still have the pain. Hoping it stops soon as it is miserable. My onc switched me to Exemestane but I’m hesitant to start it for fear the same side effects will continue. Let me know if yours clears up

dottiem profile image
dottiem in reply to Enie

I quit Ibrance 5 mo ago bcs wbc count was not recovering in 1 or 2 wks off and Letrozole bcs of joint pain. Too much fatigue from both to function. Onc wanted to switch to exemastane but I felt it wouldn't be any different. But I have search for "Letrozole vs exemastane" and found exemastane gets better reviews. I have to do something bcs CA markers went up so I am returning to the onc and will ask to try it. Not sure what will replace the Ibrance. In the mean time I found a naturopathic Dr who recommended some supplements to boost WBCs and energy. Also Mistletoe as a useful adjunct in integrative therapeutics.

Dragonfly2 profile image
Dragonfly2

YES! I am taking anastrozole but it has a typical aromatase inhibitor side effect..it took a year for the joints and tendons to start to really hurt....so badly that I had to get steroid injections to prevent trigger finger and tensonovytis. Im so sorry for your issues...anti- inflammatories work but by the morning I am feeling like I have claws not hands....exercise and heat also help...I dread the winter! 😍

dottiem profile image
dottiem

I was on letrozole for 4 months and it never got better only worse. I was switched to exemastane. After 2 mo's no problems. I did a search on letrozole vs exemastane and exemastane gets muchbetter reviews.

dottiem profile image
dottiem

Switch. I am on Faslodex now and it is much better.

dottiem profile image
dottiem

I had joint pain with Letrozole. Switched to Faslodex which isn't giving me any problems. On Afinitor also which is much easier then

dottiem profile image
dottiem

Afinitor easier than Ibrance.

morty87 profile image
morty87

Alleve and daily Claritin have helped tremendously with bone and joint pain. I've been on Ibrance and Letrozole for more than 5 years.

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