Aromatase inhibitors (AIs) are known to cause muscle and joint pain. Learn more about how to decrease this pain with Leslie J. Waltke, cancer physical therapy specialist!
Exercise is the main thing that helps me keep my AI pain under control. Sauna also helps. I have major finger joint swelling sometimes. If I sit for about 45 minutes I’m stiff. Sleep is interrupted by finger and toe joint pain. And my tendons all over my body feel achy. After exercising the stiffness and pain are greatly reduced. Great video advice! And I believe some research suggests a slightly better disease free recurrence rate for those who have the muscle, joint and hot flash side effects. 😊
Hello, Dr. Leslie Waltke, I've been going through a horrific time with Letrozole and was searching for some information on joint pain and muscle pain, too. And, I found you! I'm so glad I did! My oncologist (for meds) gave me a rapid explanation of how this drug works and then I have been on my own. It's not great. When I listened to you just now, wow!, the joint pain could potentially go away in about three weeks if I stopped taking Letrozole. So, ergo! it's not that my joints are disintegrating but the aromatase inhibitor is wreaking havoc. I hope you'll be back on this page and that I can hear more, learn more and get my life back. Right now, the impact from this drug is beginning to ruin my life. Pain day and night. I can't imagine why my oncologist at UCLA didn't tell me just how rotten this side effect could be. I am somewhat annoyed over this. I think I deserve better information and medical support. I'm just glad that I found you tonight. I've been feeling very depressed over this 24/7 pain. You have just given me hope. Thank you!
Hello Deborah! I too am glad you found this video, and I am sorry you are in so much pain! There is no joint damage happening from the AI even thought it feels like it. And yes it will go away when you stop taking the drug. However, if you are not moving because you are miserable, that is not helpful because being sedentary is not good for your joints. Move as much as you can, walking, swimming, cycling, dancing, lifting weights etc. Exercise has been shown to decrease the amount of AI pain people feel. Sometimes too, the body adjusts to the AI, and the joint pain decreases some after 3-6 months. If it just doesn't resolve and is significantly impacting your function or quality of life, talk with your med onc about switching to another AI. Best wishes, keep me in the loop on how you're doing!
@@therecoveryroom2198 Hello, Dr. Waltke. About three + months ago, I saw my oncologist and told her that the AI was not acceptable. She told me to stop taking it for three weeks and then go on to Exemestane. I did this. The pain, during the interim, fluctuated but did not go away. Now that I am on Exemestane, I'm having even more pain and I now feel it in my upper hips, down the femurs, and my hands are in pain 24/7. When I was diagnosed with breast cancer and I finished radiation, I brought a great little Scottie puppy into my life. I walk 6 times a day and I play ball with him, sometimes a lot, sometimes minimally. He keeps me moving. But the pain is getting worse. A friend of mine is going through this, too. Her hands, like mine, frequently feel like they are having electric shocks. And now I've got extreme trigger finger in my R., middle finger. My left knee is in considerable pain and the ortho. doctor gave me some Diclofenac cream. I am determined to get all the information I can surrounding the issues of side-effects from AI and find a plan forward that is considerably less painful and, with luck, just as therapeutic as is presently possible. Your RUclips videos are helpful and I just want to say I am grateful for your help.
Deborah Nourse Lattimore Dear Deborah, I am so sorry you are in so much pain. Keep moving, keep in touch with your medical oncologist. Ask your med onc if a SERM (like tamoxifen) May be appropriate for you. Those don’t typically cause the arthralgias.
I've been taking arimidex or letrozole daily for a year. Reason: I'm on high levels of testosterone and I'm pron to high estro conversion. I recently I've been experimenting pain in my left wrist and tendents in my arm, after I workout my wrist pain goes away but now it's starting to Linger, My tendent is persistent too. I believe it's the AI, I stopped taking and trying tamoxifen only for a while. If anyone had the same issues, I'd like to hear about it.
I walk 3 miles every day but I feel 10 years older since starting Letrozole. I don’t want to live with these muscle aches, it just surviving, not living
@@mr.unknown1386 my wrists and fingers ache some days, not every day. I like to do crafts and it makes it much less pleasurable. My legs feel heavy and ache, but I do carry on with my walking.
I have read all the comments here, and I am always surprised how the terrible side effects from aromatase inhibitors are downplayed. Why aren't people told what they can do to you, and that nearly 40% of women stop taking them due to side effects. These include raised cholesterol, raised blood pressure (risk of stroke), raised blood sugar (and consequent type 2 diabetes). Hair loss, weight gain, extreme muscle and bone aches. Osteoporosis, tooth loss, retinal damage, carpal tunnel syndrome, depression and brain fog. If men were supposed to take these drugs for up to 10 years as a cancer treatment, there would be an outcry, yet women are just supposed to put up and shut up, plus medical practitioners downplay the side effects and make out they can be cured with a bit of walking and mindfulness. I have refused them due to my age and a health condition that is already causing me great pain. I can't take anymore. I have gone for quality of life over quantity, plus they only give me a 2% better survival rate over 5 years. Quite honestly, what is the point? Ladies, do your research and advocate for yourselves before making a decision.
@@patbrown8117 Hi Pat! You bring up the excellent point of people needing to better understand the purpose and the risk benefit ratio of meds they are on, including aromatase inhibitors. For some people the added benefit of an AI is very small and for some it is life saving. For some, the side effects are non existent and for others they can be horrific. And some side effects are manageable with exercise some are not. Communication and understanding are crucial to making the best individual decision for yourself. Thanks for your thoughts, best wishes to you!
@@patbrown8117 PS… many men with prostate cancer use Androgen Deprivation Therapy to decrease the effects of testosterone on their cancer and cancer risk. (Similar to blocking estrogen in breast cancer). The side effects from ADT too range from minimal to horrific.
No damage? If my joints are visibly red, hot and swollen from inflammation, isn't that damage? Loss of estrogen can induce or worsen osteoarthritis or rheumatoid arthritis.
I am an Exemestane and have a lot of joint pain. The pain I feel makes it hard to even want to get out and exercise. Any advances in help for those of us suffering in the 5 years since this video was made?
@@gailwilson5192 Hi Gail! I am sorry you are hurting. Unfortunately, there has been a little change in the last five years other than much more awareness. I would suggest you talk with your medical oncologist or primary care physician about getting you to a physical therapist so they can help develop an exercise plan that feels best for you so you can move more and get stronger as that typically will help with the pain a bit. Also, try to connect with others in the cancer community or in your neighborhood to help make exercise more routine and enjoyable. Hugs to you!
I have been on letrozole 18 months. I love walking and doing stretches. Eight weeks ago I got a hip bursitis and was told that walking can bring this on. It was treated with cortisone injection. It has healed but now my joint pain is intense. My GP wants me xrayed for arthritis. She put me on meloxicam to give me some relief. Have you ever seen arthritis from taking an AI?
lisa ross Hello Lisa! Sorry about the bursitis! AIs won’t cause arthritis, but can certainly make the pain feel much worse. Your AI pains are most likely getting worse Br amuse you’re not walking and stretching enough... we need to find a way to get you exercising regularly again. Have your doc get you to a PT to treat the bursitis and get you active again. Best wishes to you!
Thank you for this video, I have a question: Are there limitations on the getting active - strategy? In my knowledge, muscle training increases the transformation from testosterone to oestrogene.. and since post menopauzal breast cancer is a oestrogen-dependent tumor, we do not want to increase the free oestrogene levels (e.g. through testosterone), so we don't give the tumor a chance to come back. But since our muscles and bones and fascia have oestrogene receptors in orde to function well, the decrease in oestrogene gives these pains.. I hope I explained it well enough, not sure.. I am hesitant in getting these patient more and more active.. thank you in advance
I am already nearly 90 and will start this drug tomorrow. I already have much pain from spinal arthritis and in sacroiliac region and am therefore somewhat disabled. How old am I going to feel?!!
You say that no damage is done to the bones, joints or muscles. But I've been asked to go for a bone mineral density BMD test!!!So, it does imply something??
Very insight and intelligent question! The drug can cause bone density loss so that is why they will check your bone density. In this video i am talking about the muscle and joint pains these medicines can cause. There is no joint or muscle damage from the medication. Great question!
I am on exemestane 25 mg due to breast cancer and my hands are very painful and the pain wakes me up every single night. I work as a teller and I stand a lot. I am over 55 and I was told I need to take this for ten years I don’t know what to do anymore so tired of the pain and not getting enough sleep. My oncologist wants me to see a hand doctor to make sure it’s not carpel tunnel which I don’t believe it is at all. Pain goes up into my arm also. Usually always happens at night. During the day or when I wake up I feel numbness. Any suggestions on what Ican do and anything natural I can take or eat to help me?
Hi, I’m in a very similar position to you. I found that trying to keep detailed notes of when, where and how severe the pain is and how long it lasts can help you when it comes to choosing pain relief meds. One of the big problems with aromatase inhibitors is that they affect your sleep patterns of circadian rhythms. When you haven’t had enough sleep, it reduces your tolerance to pain which you might otherwise easily put up with. I know exactly what you mean when really acute pain wakes you up at 4.00am and you just cannot get back to sleep ! My worse one is in between my shoulder blades and absolutely persist to torture me ! I get it deep in the bone on the forearm , the shoulders and the lower back. I get nice little twinges in the ankles and wrists from time to time just to let me know it can persecute me anywhere it likes ! Now then, you CAN ease the pain by using paracetamol + ibuprofen . Or ibuprofen patches or gel or a hot water bottle. I often start the morning with a warm herbal bath and increase the temperature slowly. I then go for a light stroll . If the pain still persists I take my first line defence of para+ibuprofen. If after 4 hours it comes back I then take codein (. 300mg + ibuprofen) that usually fixes it for a good while ! Keep up the exercises you’ve been told with your shoulders etc.. I’m still trying out vitamin supplements like Magnesium. I take mebeverine for stomach cramps and cinnamon milk for nausea. These tools at my disposal are used selectively and I’m cautious not to get hooked on Codein ! Once a week I go ‘ cold Turkey ‘ and simply endure the pain no matter how excruciating . Let me tell you a secret : your body can only take so much pain before it’s natural endorphins kick in and it just disappears ! So, there’s much you can do to stop yourself going mad ! But, you must ‘ listen ‘ to how your body expresses its pain. Remember, pain is only an illusion ; it’s the other side of the same coin that gives pleasure. In extreme circumstances there is morphine injections and a whole suite of serious painkillers a nurse will give you if it gets too much. Hopefully you won’t need that and can manage it yourself. One final note : these Aromatase tablets are very powerful and very effective at stopping your cancer from coming back. If you can resolve to stick with it for 10 years uninterrupted, it has a massive effect of reducing cancer returning of over 50% ! That is clinically hugely significant and along with all the other treatment you’ve had , the future should look good. Trouble is many people skip chemo sessions or forego radiotherapy or stop taking the hormone pills . This is why you hear these sad stories of cancer returning. Best of luck !
Hi Joanne! Pain with aromatase inhibitors is common, yet swollen joints are not. I would recommend you talk with your med onc and primary care docs to see what’s going on.
Hey Jill! I fortunately have not had to take AIs, but have worked with thousands who unfortunately have. If you're wondering if I've ever been miserable and had to fight back from a life threatening illness, that answer is yes.
Mine were severe, I couldn’t walk 2 blocks without severe hip pain! I’m used to walking several miles a day! Who says they decrease muscle pain it doesn’t for me ! It’s a bunch of baloney and we don’t believe you!
@@roselucht4583 Hey Rose. Sorry you are hurting. If you’re still on the AI, please stay in good contact with your med onc and PT so they know what you’re dealing with. It is important to find ways to stay active so it doesn’t lead to more pain and disability for you. Best wishes to you.
Exercise is the main thing that helps me keep my AI pain under control. Sauna also helps. I have major finger joint swelling sometimes. If I sit for about 45 minutes I’m stiff. Sleep is interrupted by finger and toe joint pain. And my tendons all over my body feel achy. After exercising the stiffness and pain are greatly reduced. Great video advice! And I believe some research suggests a slightly better disease free recurrence rate for those who have the muscle, joint and hot flash side effects. 😊
Thanks for sharing your story! Train on, JB!
Thanks for the video! I start letrozole in a few weeks (after radiation). Really good to know damage isn't being done.
Hope the ending of your radiation is going well, Anne. And I hope your transition to letrozole is a smooth!
Hello, Dr. Leslie Waltke, I've been going through a horrific time with Letrozole and was searching for some information on joint pain and muscle pain, too. And, I found you!
I'm so glad I did! My oncologist (for meds) gave me a rapid explanation of how this drug works and then I have been on my own. It's not great. When I listened to you just now,
wow!, the joint pain could potentially go away in about three weeks if I stopped taking Letrozole. So, ergo! it's not that my joints are disintegrating but the aromatase inhibitor
is wreaking havoc. I hope you'll be back on this page and that I can hear more, learn more and get my life back. Right now, the impact from this drug is beginning to ruin my
life. Pain day and night. I can't imagine why my oncologist at UCLA didn't tell me just how rotten this side effect could be. I am somewhat annoyed over this. I think I deserve better
information and medical support. I'm just glad that I found you tonight. I've been feeling very depressed over this 24/7 pain. You have just given me hope. Thank you!
Hello Deborah!
I too am glad you found this video, and I am sorry you are in so much pain!
There is no joint damage happening from the AI even thought it feels like it. And yes it will go away when you stop taking the drug. However, if you are not moving because you are miserable, that is not helpful because being sedentary is not good for your joints.
Move as much as you can, walking, swimming, cycling, dancing, lifting weights etc. Exercise has been shown to decrease the amount of AI pain people feel. Sometimes too, the body adjusts to the AI, and the joint pain decreases some after 3-6 months.
If it just doesn't resolve and is significantly impacting your function or quality of life, talk with your med onc about switching to another AI.
Best wishes, keep me in the loop on how you're doing!
@@therecoveryroom2198 Hello, Dr. Waltke. About three + months ago, I saw my oncologist and told her that the AI was not acceptable. She told me to stop taking it for three weeks and then go on to Exemestane. I did this. The pain, during the interim, fluctuated but did not go away. Now that I am on Exemestane, I'm having even more pain and I now feel it in my upper hips, down the femurs, and my hands are in pain 24/7. When I was diagnosed with breast cancer and I finished radiation, I brought a great little Scottie puppy into my life. I walk 6 times a day and I play ball with him, sometimes a lot, sometimes minimally. He keeps me moving. But the pain is getting worse. A friend of mine is going through this, too. Her hands, like mine, frequently feel like they are having electric shocks. And now I've got extreme trigger finger in my R., middle finger. My left knee is in considerable pain and the ortho. doctor gave me some Diclofenac cream. I am determined to get all the information I can surrounding the issues of side-effects from AI and find a plan forward that is considerably less painful and, with luck, just as therapeutic as is presently possible. Your RUclips videos are helpful and I just want to say I am grateful for your help.
Deborah Nourse Lattimore
Dear Deborah, I am so sorry you are in so much pain. Keep moving, keep in touch with your medical oncologist. Ask your med onc if a SERM (like tamoxifen) May be appropriate for you. Those don’t typically cause the arthralgias.
I've been taking arimidex or letrozole daily for a year. Reason: I'm on high levels of testosterone and I'm pron to high estro conversion. I recently I've been experimenting pain in my left wrist and tendents in my arm, after I workout my wrist pain goes away but now it's starting to Linger, My tendent is persistent too. I believe it's the AI, I stopped taking and trying tamoxifen only for a while. If anyone had the same issues, I'd like to hear about it.
I walk 3 miles every day but I feel 10 years older since starting Letrozole. I don’t want to live with these muscle aches, it just surviving, not living
Are you having joint pain, tendent or wrist? I've been on arimidex or letrozole daily for a year and just now having bad issues.
@@mr.unknown1386 my wrists and fingers ache some days, not every day. I like to do crafts and it makes it much less pleasurable. My legs feel heavy and ache, but I do carry on with my walking.
I have read all the comments here, and I am always surprised how the terrible side effects from aromatase inhibitors are downplayed. Why aren't people told what they can do to you, and that nearly 40% of women stop taking them due to side effects. These include raised cholesterol, raised blood pressure (risk of stroke), raised blood sugar (and consequent type 2 diabetes). Hair loss, weight gain, extreme muscle and bone aches. Osteoporosis, tooth loss, retinal damage, carpal tunnel syndrome, depression and brain fog.
If men were supposed to take these drugs for up to 10 years as a cancer treatment, there would be an outcry, yet women are just supposed to put up and shut up, plus medical practitioners downplay the side effects and make out they can be cured with a bit of walking and mindfulness. I have refused them due to my age and a health condition that is already causing me great pain. I can't take anymore. I have gone for quality of life over quantity, plus they only give me a 2% better survival rate over 5 years. Quite honestly, what is the point? Ladies, do your research and advocate for yourselves before making a decision.
@@patbrown8117
Hi Pat! You bring up the excellent point of people needing to better understand the purpose and the risk benefit ratio of meds they are on, including aromatase inhibitors. For some people the added benefit of an AI is very small and for some it is life saving. For some, the side effects are non existent and for others they can be horrific. And some side effects are manageable with exercise some are not. Communication and understanding are crucial to making the best individual decision for yourself.
Thanks for your thoughts, best wishes to you!
@@patbrown8117
PS… many men with prostate cancer use Androgen Deprivation Therapy to decrease the effects of testosterone on their cancer and cancer risk. (Similar to blocking estrogen in breast cancer). The side effects from ADT too range from minimal to horrific.
No damage? If my joints are visibly red, hot and swollen from inflammation, isn't that damage? Loss of estrogen can induce or worsen osteoarthritis or rheumatoid arthritis.
“Doktor, turn on my pain inhibitors!”
I am an Exemestane and have a lot of joint pain. The pain I feel makes it hard to even want to get out and exercise. Any advances in help for those of us suffering in the 5 years since this video was made?
@@gailwilson5192
Hi Gail! I am sorry you are hurting. Unfortunately, there has been a little change in the last five years other than much more awareness. I would suggest you talk with your medical oncologist or primary care physician about getting you to a physical therapist so they can help develop an exercise plan that feels best for you so you can move more and get stronger as that typically will help with the pain a bit. Also, try to connect with others in the cancer community or in your neighborhood to help make exercise more routine and enjoyable. Hugs to you!
I have been on letrozole 18 months. I love walking and doing stretches. Eight weeks ago I got a hip bursitis and was told that walking can bring this on. It was treated with cortisone injection. It has healed but now my joint pain is intense. My GP wants me xrayed for arthritis. She put me on meloxicam to give me some relief. Have you ever seen arthritis from taking an AI?
lisa ross
Hello Lisa! Sorry about the bursitis! AIs won’t cause arthritis, but can certainly make the pain feel much worse. Your AI pains are most likely getting worse Br amuse you’re not walking and stretching enough... we need to find a way to get you exercising regularly again. Have your doc get you to a PT to treat the bursitis and get you active again. Best wishes to you!
Instead of aromatise inhibitor can post menopausal women take tamoxifen??
Thank you for this video, I have a question: Are there limitations on the getting active - strategy? In my knowledge, muscle training increases the transformation from testosterone to oestrogene.. and since post menopauzal breast cancer is a oestrogen-dependent tumor, we do not want to increase the free oestrogene levels (e.g. through testosterone), so we don't give the tumor a chance to come back. But since our muscles and bones and fascia have oestrogene receptors in orde to function well, the decrease in oestrogene gives these pains.. I hope I explained it well enough, not sure.. I am hesitant in getting these patient more and more active.. thank you in advance
No answer in 2 years?
I am already nearly 90 and will start this drug tomorrow. I already have much pain from spinal arthritis and in sacroiliac region and am therefore somewhat disabled. How old am I going to feel?!!
Hi Wendy! Checking in with you to see how you’re doing on the Aromatase Inhibitor. Hope you’re doing ok, let me know!
@@therecoveryroom2198 I tried it but siezed up altogether with arthritis pain so felt about 110, and stopped it!
You say that no damage is done to the bones, joints or muscles. But I've been asked to go for a bone mineral density BMD test!!!So, it does imply something??
Very insight and intelligent question!
The drug can cause bone density loss so that is why they will check your bone density. In this video i am talking about the muscle and joint pains these medicines can cause. There is no joint or muscle damage from the medication. Great question!
I am on exemestane 25 mg due to breast cancer and my hands are very painful and the pain wakes me up every single night. I work as a teller and I stand a lot. I am over 55 and I was told I need to take this for ten years I don’t know what to do anymore so tired of the pain and not getting enough sleep. My oncologist wants me to see a hand doctor to make sure it’s not carpel tunnel which I don’t believe it is at all. Pain goes up into my arm also. Usually always happens at night. During the day or when I wake up I feel numbness. Any suggestions on what Ican do and anything natural I can take or eat to help me?
Hi, I’m in a very similar position to you. I found that trying to keep detailed notes of when, where and how severe the pain is and how long it lasts can help you when it comes to choosing pain relief meds. One of the big problems with aromatase inhibitors is that they affect your sleep patterns of circadian rhythms. When you haven’t had enough sleep, it reduces your tolerance to pain which you might otherwise easily put up with. I know exactly what you mean when really acute pain wakes you up at 4.00am and you just cannot get back to sleep ! My worse one is in between my shoulder blades and absolutely persist to torture me ! I get it deep in the bone on the forearm , the shoulders and the lower back. I get nice little twinges in the ankles and wrists from time to time just to let me know it can persecute me anywhere it likes ! Now then, you CAN ease the pain by using paracetamol + ibuprofen . Or ibuprofen patches or gel or a hot water bottle. I often start the morning with a warm herbal bath and increase the temperature slowly. I then go for a light stroll . If the pain still persists I take my first line defence of para+ibuprofen. If after 4 hours it comes back I then take codein (. 300mg + ibuprofen) that usually fixes it for a good while ! Keep up the exercises you’ve been told with your shoulders etc.. I’m still trying out vitamin supplements like Magnesium. I take mebeverine for stomach cramps and cinnamon milk for nausea.
These tools at my disposal are used selectively and I’m cautious not to get hooked on Codein ! Once a week I go ‘ cold Turkey ‘ and simply endure the pain no matter how excruciating . Let me tell you a secret : your body can only take so much pain before it’s natural endorphins kick in and it just disappears ! So, there’s much you can do to stop yourself going mad ! But, you must ‘ listen ‘ to how your body expresses its pain. Remember, pain is only an illusion ; it’s the other side of the same coin that gives pleasure. In extreme circumstances there is morphine injections and a whole suite of serious painkillers a nurse will give you if it gets too much. Hopefully you won’t need that and can manage it yourself. One final note : these Aromatase tablets are very powerful and very effective at stopping your cancer from coming back. If you can resolve to stick with it for 10 years uninterrupted, it has a massive effect of reducing cancer returning of over 50% ! That is clinically hugely significant and along with all the other treatment you’ve had , the future should look good. Trouble is many people skip chemo sessions or forego radiotherapy or stop taking the hormone pills . This is why you hear these sad stories of cancer returning.
Best of luck !
I heard sometimes just changing to a different aromatase inhibitor can help. They all work the same…
My joints are swollen so whats that about? It is real. I exercise a lot, my weight is low, and I feel lots of pain.
Hi Joanne! Pain with aromatase inhibitors is common, yet swollen joints are not. I would recommend you talk with your med onc and primary care docs to see what’s going on.
Have you been on these yourself??
Hey Jill! I fortunately have not had to take AIs, but have worked with thousands who unfortunately have. If you're wondering if I've ever been miserable and had to fight back from a life threatening illness, that answer is yes.
Mine were severe, I couldn’t walk 2 blocks without severe hip pain! I’m used to walking several miles a day! Who says they decrease muscle pain it doesn’t for me ! It’s a bunch of baloney and we don’t believe you!
@@roselucht4583
Hey Rose. Sorry you are hurting. If you’re still on the AI, please stay in good contact with your med onc and PT so they know what you’re dealing with. It is important to find ways to stay active so it doesn’t lead to more pain and disability for you. Best wishes to you.