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A MyBCTeam Member asked a question 💭
Rochester, NY

At what point did this happen?
Did you require surgery?

June 10
 · 
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Answer Summary

Many community members shared that they developed carpal tunnel syndrome, joint pain, and muscle weakness after starting aromatase inhibitors... Read more

Many community members shared that they developed carpal tunnel syndrome, joint pain, and muscle weakness after starting aromatase inhibitors like anastrozole and letrozole, often within just a few months of beginning treatment. Several members described trying physical therapy, hand braces, and castor oil packs to manage symptoms and avoid surgery, while some made the difficult choice to stop their medication due to severe side effects. A recurring theme was frustration that doctors rarely acknowledge these drugs as the cause, along with a strong call for more research on dosing options and the experiences of older women taking these medications.

A MyBCTeam Member

I developed carpal tunnel after 2 months on anastrozole. At age 85,I was losing the ability to write after starting the meds. I could not see taking this for five years and enduring a real crippling of my ability to continue my work. I am now 86, I practice developmental pediatrics full-time, and after stopping the medication, my left hand has improved greatly, but my right hand is still quite swollen in the mornings, I don’t know how many more years I will live, but I would like to be able to be functional. I had lumpectomy and radiation for a stage one hormone positive and Her negative with nodes negative. Despite stopping the medication half a year ago, I still have many aches and pains, and my awkward, swollen right hand. I have accepted the risk of not taking these medications at my advanced age. There is precious little written about people in their late 80s choosing to take these medications. I would like to see more research about this for other people coming along.

June 10
A MyBCTeam Member

@A MyBCTeam Member

I went from dangerous muscle loss on both legs and legs giving way with no
warning to building up those muscles lost.

The Letrozole damaged all the supporting muscles on both interior and exterior pats of legs above and below both knees and back of knees.
I am a poster child for severe AIMSS from Aromatase inhibitors.

I injured my outer right leg muscle when I finally was able to exercise after stopping Letrozole. I ended up in Orthopedic Urgent Care. I could not walk and had to use a walker.
Took from October to Jan 1st to work with a home visiting PT. Thought I would have to always use a walker. PT convinced me to use my 4 corner cane 10% of the time.
Went from that in a few days to just using cane.
Now can walk in house without cane but use walker for Dr. appointments and long walking there.

All the recovery was done seated using exercises with an ottoman.

You can do it.

June 10 (edited)
A MyBCTeam Member

I was on Letrozole (3rd Aromatase Inhibitors I tried) for 4 months. Developed Carpal Tunnel and DeQuervain's Tendonitis in both hands. Excruciating pain,PT, OT, hand braces for 2 months. Oncologist paused Letrozole for 3 months until I see her in July. Supplement stops for D3, Curcumin, Calcium. Muscle weakness total body especially legs, arms. I went from cane to walker. This treatment is brutal. PT is a slow recovery for legs and lots of work when you feel too weak to do it...doing it though!
For hands, trying to avoid surgery. It would be a repeat for Carpal Tunnel both hands and right hand repeat for DeQuervain's tendon release; none fun. Hope research comes up with a better approach.

June 10
A MyBCTeam Member

So , you take any now ! I’m on Arimidex the generic form ! I ache all over ! Want to quit , but afraid to ! Big decision!

June 10
A MyBCTeam Member

I have a mild diagnosis of Dupuytren's contracture in my right hand. Possibly diagnosed in early 2000’s. No issues until I started taking Anastrozole. Extremely puffy fingers and I had pads of swollen skin at the base of each finger. Literally the joints are tender to touch and many days the hand when I draw a fist feel tight. I most likely need to see my hand doctor if I feel like it needs some attention or I can’t deal with the pain. I have presented my hand and concerns to all my current doctor but they only deal in their specialized fields. 😵‍💫🥴

June 10

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A MyBCTeam Member asked a question 💭
Rochester, NY