Letrozole and Tendonitis?

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)?

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?

 @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.

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 lol

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.

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.

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.