Letrozole and Tendonitis?
Hello all! I am coming up on 6 years of AIs with Letrozole being the most recent one. I had been on Arimidex but developed trigger thumb and fatigue over time so I switched to Letrozole. I have been okay for the most part but I now have tenosynovitis in my left wrist which won't go away and a new tendon issue on the top of my right foot that makes walking difficult. Have any of you experienced tendon issues while on Letrozole? Does anything help or do I need to switch AIs again? Thanks for your hive mind help!
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Yes on tendon issues on AIs! Honestly, don't know if switching would help. Hopng you can get some help.
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Joules44, I experienced tendon inflammation from letrozole that kept worsening week by week. I stayed on it for two years before my medical oncologist (MO) advised switching to exemestane. I’ve now been on exemestane for almost three years, and while it’s not perfect, it’s much better than letrozole.
My MO explained that anastrozole and letrozole are in the same family of drugs, so if one causes issues, the other likely will as well. Exemestane works differently, and in my experience, the side effects have been significantly different and more tolerable.
I’d suggest talking to your MO about switching, as the situation likely won’t improve on its own. How much longer do you need to stay on aromatase inhibitors (AIs)?
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@joules44 - I've been on anastrozole 4½ years. In the last year I've had more trouble with tendonitis in my right hand and I suspect it in some recent foot pain. One article I read on the link between anastrozole and tendonitis (don't ask me which one) suggested low collagen. So, I'm thinking of adding a collagen supplement, but I'm still on the fence.
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On Anastrazole for 8 months after a mastectomy for DCIS, during which I’ve experienced trigger digits, a worsening of arthritis in my knees and feet, and serious hair thinning. When I went through menopause 20 years ago, I was one of the lucky ones: no hot flashes or night sweats, no real symptoms at all, actually. Now, at 73, Anastrozole has changed my life, and I’m seriously thinking about going off of it. I’m the sole caregiver for my 80 year old partner, and he has a traumatic brain injury, is incontinent, and is living with congestive heart failure. Anastrozole is sapping me of energy I need to care for him, and feeding into my depressive tendencies. My goofy oncologist insists that she has never heard of Anastrozole causing hair loss, but friends who have gone through this treatment tell me that they have experienced the same thing. This week, my cleaning lady told me that if she lost as much hair as I do, she’d be bald! Guess I should count my blessings, but I need to be able to operate without exhaustion to keep things going around here.
Have any of you had experience with abandoning hormonal treatment?
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Hi @amywren, I’m sorry you are having problematic side effects from anastrazole in addition to all the other complications in your life. Have you asked your oncologist what your risk of recurrence would be without taking an AI? While AIs reduce the risk of recurrence by 50%, if the risk is small to begin with the benefit of anastrazole might not be worth it for you. Only you can decide but knowing your personal risk statistics would help you make an informed decision. All the best.
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@amywren I would suggest seeking a second opinion. I know a couple of friends in their 40s who were offered the option to take an aromatase inhibitor after being diagnosed with DCIS. They chose not to take the medication and are doing well several years later. Every individual is unique, but some doctors tend to strictly follow guidelines without fully considering factors like patient age and low risk levels.
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I took anasrazole for a few months after being diagnosed while awaiting surgery in 2020. Lots of hair thinning, joint pain. Decided not to continue taking it after surgery - I asked oncologist for my recurrence/mets risk taking AI vs not taking it and it was 3% with it and 6% without it. Given I was 62, had been on HRT for many years until diagnosis so had elevated estrogen at that time which could well have contributed to the cancer developing and had no genetic factors that increase risk I decided to play the odds. If I was 10 years younger I’d probably have made a different decision and tried other hormone suppressors. Only time will tell if my decision was the right one but I’m at peace with it.
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I’ve been on Letrozole for almost one year following double mastectomy and reconstruction for stage 2 left, stage 1 right, BRCA1 diagnosis, 5 months of chemo followed by ovary etc removal. Toward end of chemo, experienced horrific carpal tunnel attack. Had a cortisone shot then eventually had surgery on my right hand. I started the AI after the initial attack so I attribute that to medical menopause. Since that I developed horrible tendinitis in my heels—I’m finally ALMOST back to normal after almost a year. But, have tenosynovitisnin my left wrist and trigger finger in my right middle finger—may try a second cortisone shot in both and surgery if the trigger never ends. It’s simple enough. But I also have hip shoulder and elbow pains. Nothing overly terrible but most is new except I’ve had hip issues for years. Threw my lower back out a couple weeks ago but that seems to be ok and probably from my hips being misaligned
I’m wondering if switching is worth trying or if they all have horrible side effects. I keep hoping things will subside over time but I’m a year in with probably 9 to go. I used to be quite active and now I just canceled my Peloton subscription to focus on just walking and doing some weight machines at the gym. Have to keep moving but the tendinitis gets aggravated. No win situation
I turn 50 next year and I feel 80. Seeing my Dr tomorrow so I’ll ask if switching makes sense or just keep struggling. Has anyone had success with switching? I’m almost scared —it’s like the devil you know v the unknown..
oh and the weight gain has been super depressing as well. All in my middle. Starving doesn’t even budge the scale. I’m trying to track macros now..I’m so desperate for relief lol0 -
mpell2025, What you're describing has happened to so many of us. I experienced similar symptoms, even though I was much younger at the time. I didn’t gain weight, but everything else seemed to fall apart—tendons, joints—you name it: tennis elbow, Baker’s cyst, pain in my feet, hands, and more.
After 2.5 years on letrozole, I reached a point where the pain in my feet was so severe I could barely stand— and I’m someone who hikes and practices yoga regularly. My medical oncologist eventually recommended switching to exemestane, and it made a big difference.
Definitely talk to your doctor about trying a different aromatase inhibitor. Sometimes a switch can bring real relief. Keep us posted—you're not alone in this.
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Thank you! that is encouraging to hear that a change of AI helped. I will ask tomorrow about potentially switching to a different one. It's been so difficult for me to know what is just menopause for me or exacerbated by this medication because everything happened for me within a month's time.
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Hello Ladies, I am brand new to this forum, normally I do not participate in them, but perhaps my story will help. I was on HRT 14 years. No issues at all bones good, no menopause symptoms, all was well. Last June I was diagnosed with IDC no lymph node involvement. I had a lumpectomy, and 6 weeks of radiation and now I'm on Anastrozole.
I did have horrible hot flashes and night sweats, I managed with Veozah samples from my general doctor for a few weeks, and they finally subsided, but nothing else has gotten any better, only worse, much worse on Anastrozole.
My hands and fingers hurt, I believe I have carpel tunnel in my left wrist, my left arm is always tingling and numb as well. I have a cough I don't understand, my eyes are dry and blurry, my vision is not right, my back hurts, a lot, I can barely move sometimes, basically every joint in my body hurts and now I have some sort of Achilles tendon issue making walking very painful. I'm always tired, exhausted. Recently I've been diagnosed with Hyperparathyroidism, that I personally think this medication is causing. The doctors want me to stay on anastrozole but it's rough. Yes my hair is coming out too, and I used to be very sharp with my thinking and am slower and foggy. Is this all the medicine? I was fine before I took it, so I believe so.
I'm wondering why the orthopedic doctors can't step up to help with all this joint pain. Why aren't they part of the Breast Cancer team of doctors? I have an appointment in a week to see one and ask if there is any thing they can suggest to help me stay on this medication by helping me navigate all this pain, stiffness etc. I have no idea what they might offer if anything. Seems odd the options are suffer on the meds, or go off the meds and risk cancer again.
Any ideas as to how to manage all this? Thanks in advance.
Jill
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Hi Jill, I’m sorry you are having such a tough time on anastrozole. Many of your side effects could be caused by lowered estrogen levels from the AI. Estrogen blockers can cause hypercalcemia which can mimic hyperparathyroidism or aggravate it if the HPT has another cause. Going from 14 years on HRT to estrogen deficit is probably making things harder on your body.
The lack of estrogen can destroy cartilage which can’t be cured by orthopedic surgeons. Surgery can relieve the pain of trigger finger or carpal tunnel but it won’t remove the root cause. Exercise, NSAIDS and other drugs can help with SEs but are not effective for everyone. Have you had an endocrinologist (as opposed to a thyroid surgeon) evaluate your HPT to figure out whether it is primary or secondary? If estrogen deprivation is driving the HPT surgery might not solve your problems.
While AIs reduce the risk of cancer recurrence by 50% sometimes the severity of the SEs may not be worth the benefit. Have you asked your MO about your statistical risk of recurrence with and without taking AIs? It is ultimately your choice about what you are comfortable with. Also, taking AIs does not guarantee that you won’t have a recurrence since the statistical data applies to large populations rather than individuals.
Tamoxifen works in a different way and while it has its own set of side effects and is slightly less effective (40% reduction in risk of recurrence) it might be a better option. Some people have fewer SEs taking a different AI. Oncologists promote estrogen blockers since preventing cancer recurrence is their job. I turned down AIs with the backing of my endo, gastro and ortho doctors because of the high risk of making my other medical issues worse. My risk of recurrence has been doubled but I can live with that. Other people might decide differently. If I did have a recurrence I would take AIs since the situation would be changed.
There are some current clinical trials investigating whether other SERDs or different dosing regimens would cause fewer SEs for those with early stage bc but there are no results yet. You need to decide whether your side effects outweigh the benefit of estrogen blockers and whether you would regret the decision to stop them if the cancer came back as mets. All the best.
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FWIW, I had trigger L thumb twice—the second time (requiring tendon release surgery) was 4.5 years before breast cancer. After 8 months on letrozole my R thumb began triggering, and I had a cortisone shot for it, which didn't seem to help so tendon release sugery was scheduled. The morning of my surgery, in the pre-op room, my thumb stopped triggering. My surgeon came in and was delighted—he was running late and I'd been NPO since midnight. Got dressed and went to have a great breakfast! That was in 2017. No triggering since.
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Thought I would give an update. My dr had me take a two week break from letrozole and I had some improvements everywhere except my left wrist tendinitis and right middle trigger finger. So now I am on exemestane (spelling?) and feeling much better. My achilles tendinitis has cleared up-i'm walking three miles again without issues, my elbows, shoulders and hips are good now. So if one drug is really bothering you, worth asking about changing. I stuck it out for a year on letrozole, partly because I had such a hard entry into menopause with chemo and ovary removal surgery all around same time I started the medication and I wasn't sure if my issues were due to the medication.
Regarding Jill's comment—I didn't even put together the tendinitis issues with the medication and menopause at first until my hand ortho told me! I think in general, menopause (and especially breast cancer patients on these meds) care needs include Ortho or at least educate women. I'm 49 and most of my friends aren't post-menopausal yet and i'm educating them. I have to say my hand ortho and my hip ortho (I have preexisting labral tear in my hip that started acting up but now is much better with the medication change) have been really understanding and helpful.
Regarding the comments about carpal tunnel, trigger fingers—i know I had mild carpal tunnel pre-medical menopause, but I had a terrible attack of it toward the end of chemo when i went into medical menopause. I had a cortisone shot and we hoped it would ease up over time. It did not and I had the carpal tunnel release surgery to avoid permanent nerve damage. Carpal tunnel release surgery can sometimes trigger the trigger finger according to my hand surgeon, but I had it during the bad carpal tunnel attack and I just thought it was part of the carpal tunnel issue. My carpal tunnel symptoms resolved after surgery—and it was super simple procedure. No anesthesia and I drove home. After that, I developed the DeQuervains tendinitis in my left wrist and the trigger finger issue in the right hand remained. I just had second cortisone shots in both hands in hopes the medication change might allow both to ease up without surgery. I don't expect it— Trigger fingers and carpal tunnel run in my family so I likely would have had these issues regardless of the AI drugs.
As far as joint pain, I have been taking glucosamine chondroitin supplement recommended by an ortho and within a couple weeks, my joints improved. Worth trying for the general joint achiness. I've also found doing PBS Classical Stretch workouts, which focus on dynamic movements with some tai chi, strengthening, barre, gentle stretching has been really helpful with mobility and strength and pain relieving.
I have no solution for the weight gain. I am getting a little more active now that the tendinitis has gotten under control. Some weight machines, body weight strength, resistance bands, walking…anything good for bone health..But dieting—calorie cutting, macro counting—not one pound will come off. If anyone has a trick, i'm all ears. Trying to avoid GLP-1 drugs, but getting to a point where I might consider it.
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On letrazole approximately 8 mos. Recently developed wrist pain and diagnosed with De Quervain's … Received a steroid shot on the wrist, just below the thumb. It's helped quite a bit, not 100%. Babying the wrist with a spica splint when doing hand intensive hobby and when going to the gym.. Hopefully I won't need a second shot and/or surgery down the road. Never had hand or wrist problems before this medication.
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Hi all, I know this is an older thread but wondering if there were any updates.
BMX for IDC. No spread therefore recommended Letrozole for 5 years. I only made it to 4 months, the joint pain was excruciating. When I was finally able to speak with my MO I could barely walk. I had to hold on to my husband for support. I was given a medication holiday and within days the joint pain which felt like razor blades in my knees, ankles and wrists abated. There was some lingering pain in the tendons but after the extreme pain of the joint issues it seemed manageable.
I chose not to go back on an AI and opted to try Tamoxifen. By day 5 I was functionally blind. Extremely dry eyes, blurred vision and severe photo sensitivity (sun glasses indoors and still couldn't look at a screen or have lights on) I stopped all treatment. My MO would not discuss anything directly with me - all concerns went through the nurse. It felt like a childhood game of telephone.
It has now been 7 months and the tendon issues are actually worse not better. I felt good after stopping the treatments and was able to return to some of my active pastimes but the more active I became, the worse I began to feel. I've scaled my activity levels back down again, but have only found mild relief.
I have requested a new Oncologist and I am now sitting in limbo. With the holidays looming I don't see any help on the horizon for weeks.
Has anyone had these issues resolve with time or is this my life now?
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Hi @missymoo, Have you consulted an orthopedic or sports medicine doctor? When I had imaging done in addition to tendinitis I had arthritis and partially torn ligaments. I ended up doing a combination of PT and steroid injections which helped.
I hope you can get a MO who is a better communicator. There are two other AIs you can try but occasionally the SEs are so bad that QOL takes precedence over the increase in recurrence risk. All the best.
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Thanks for your response. I don't know if we have any orthopedic/sports doctors in our area I'm in a rather small rural community. I will be seeing my PCP early in Jan. so I will be sure to ask.
I opted to decline the other AIs - I have 0 confidence in there being any improvement in QOL. Both drugs hit me like a runaway freight train. I also have a history of chronic pain and heavy NSAID use and apparently that coupled with osteopenia, greatly increases the odds of severe join pain as a side effect. I am so frustrated with the lingering tendon issues that I didn't have before starting treatment and was never even warned about.
I had hoped to take whatever odds I was given and enjoy a life actually worth living.
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I used to live in Ontario and if rules are still the same your PCP can refer you to any doctor in the province. You might have to travel (possibly to Sudbury) to find appropriate orthopedic surgeons. If you do some research online and have a doctor or practice name to give to your PCP they are more likely to put in the referral.
I also declined AIs for a number of reasons. My MO was OK with it since he thought my reasoning was sound and was satisfied I understood the risk I was taking. Oncologists are doing their job by pushing AIs to try to prevent recurrence but unfortunately some doctors drop you because they won't consider your overall health situation.
Since I live in a rural area I travel three hours each way to another state to get medical care that is not available locally. I guess it's the price you pay for living in a scenic uncrowded area. Good luck getting the referral.
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Yes it is still the same. I already travel 2 hours each way to Sudbury for the MO and will have to trave 3 hrs for the PS when that referral goes through. I used to have to travel to downtown Toronto to see my pain specialist. Full day of travel for a 20 minute appointment. But yes, looking out to see my horses, fields and forest is well worth it!
The last Oncologist was not a good fit from the start. She didn't stop communicating with my decision to stop treatment, she never started. I was basically told you have to take this, handed the medical information sheets and sent on my merry way.
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I'm sorry to hear you're dealing with pain from these medications and the challenges you're facing in accessing good care.
I tried all 3 AIs and then different dosing/schedules for Tamoxifen. I reacted poorly to all. My hands, fingers, wrists, ankles, hips, neck and shoulders seem to have gotten the worst of it and I am in constant pain. I keep hoping the pain will improve. I saw my hand surgeon just last week and he offered more injections or surgery. I'd be without the use of my entire right arm and hand for 8 weeks if I were to go the surgery route. I am in PT for the neck/fascia/shoulders and for my feet and ankles which have fascia/tendon problems and neuropathy. I started hand PT, but was injured by the exercises, so I'm back to heat and topical gel along with braces for my carpel tunnel wrists.
I hope you can find some help. I've never had a good Onco or primary doc, and have taken myself to specialists. My endocrinologist and I think it is more important for me to improve my overall health and well-being, so that's the direction I'm going in. These meds drive up my insulin resistance, cholesterol, inflammation, pain, insomnia, metabolic syndrome and weight…. all the things that feed my type of cancer, damage my heart more than it is already, and shutdown my ability to think and function.
I've had to look at the cost of the "cure" and it's just not worth it to me at this point. I'm still having side effects of chemo drugs pop up and/or intensify. It's hard to tell what's causing what at this point. I meet with the Onco next month. She will continue surveillance, I guess? Not sure what she's going to say. Next…. I do have an appointment with a palliative care doctor next month as well, so we'll see if he can help me out with the pain/sleep/functioning issues. Fingers crossed.
Praying that you find what works best for you and that you get some relief. 😊
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I take letrozole and I am doing fine. I had some join pain/discomfort at the beginning but it got better. Exercise helped me.
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My heart goes out to you with all you've endured with these drugs. I completely understand the quality of life decisions.
I made the decision to take the odds I've been given and live a life that's actually worth living for me. To continue on the treatment I would not have been able to work and would have had to sell our farm, my horses and lose everything that my husband and I have spent a lifetime building together.
Of course life likes Irony so on January 1st I took a bad fall and broke my back. I was hospitalized for 15 days, 3 of which were spent immobilized until they could transfer me to another hospital for neurosurgery. I'm back home recovering and doing well. The surgeon feels I should make a complete recovery aside from the loss of flexibility due to the new hardware installed.
On a side note, it was interesting that one of the nurses commented on how high my pain tolerance was, as this was considered one of the most painful surgeries they perform. My worst post surgery day was just an average day on Letrozole.
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I'm so sorry to hear about your accident, but am glad that you are on the mend!
Thank you for your kind words. I'm hoping that time, PT, and work on my own will cause the side effects from all the medications to recede. I wish I'd never taken them, but I didn't have the information I needed in order to make an informed decision, so here I am trying to undo/rehabilitate what I can. Doctors seem to just push their playbook of chemo, surgery, and then medications to keep the cancer at bay regardless of the impact on quality of life or life at all. This needs to change. When strong enough, I foresee advocacy in my future. I don't want another woman to go through what I have.
Best wishes for your continued recovery. Hug a horse for me. I love them. :) GB
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I hope you are able to find some relief from the complications and I hope you do work advocating for us all.
Women's health is such a sh!t show. Blame the patient for side effects - if we have any adverse effects it must be our fault; hysterical, attention seeking, drama queens. I've lived in this body for 60. I know what is normal and what is not.
I was given very limited information on the drugs, and no opportunity to ask questions. I was told that I had to take them to reduce the chance of recurrence but at no time during the first appointment was I told what stage my cancer was, what my risks actually were. I was told to start right away and was given grief when I said I was going to delay a couple of days until after a family dinner. Funny, when I finally lost it 3 months later due to pain and lack of sleep, the nurse says to me "well if it's that bad stop taking it". Hmm maybe get your stories straight.
I feel that hormone blockers are the dirty little secret no one talks about or prepares you for. Don't want to scare anyone, so much better to be blindsided. Okay rant over.
And horses duly hugged ❤️
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I agree with all that you said. It's like a shell game. Here's one for you…… When I told my first Onco that I couldn't take SSRIs or SNRIs at my appointment after my first chemo treatment, his comment was "Well, I guess you know EVERYTHING!" Sound familiar? If I hadn't been bent over, heart beating out of my chest, sick, faint, etc… I'd have told him where to go. I'm 62, I think I've lived a little life and been to a doctor or two for this or that, and yes, Dr. Jerk, I do know more that you do about what drugs I can and cannot tolerate. Idiot! Please, though, do add more poison to the bonfire you've set off in my body.
You will appreciate this, the new palliative care doctor I saw recently prescribed a class 3 narcotic patch even though it's noted on my chart that I can't take codeine, opiates, any muscle relaxer, or anything else that suppresses the CNS unless I'm in the OR monitored by an anesthesiologist. Really? The pharmacist left a voicemail before I got back to my place after the appointment raising red flags of concern. I researched the drug, called a couple of my doctors, and watched my Endo sharking her head so hard during our video call I thought she'd give herself whiplash. What did that doctor not get? Ugggh. Can I ever see a doctor and just be the patient? No trust at all on my end.
I think it's kind of like being one bad relationship after another to the point where you want to walk away and become a spinster and adopt a lot of animals on a farm out in the country. Hey, that sounds pretty good right now. :)
Anyway, I hear you and I'm sorry you've had to go through all that you have. Sadly, I do not think we are in the least bit alone. I find a lot of validation and information via the podcasts at Breastcancer.org and also Breast Cancer Conversations. So helpful!
Take care. GB
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