Side effects on Letrozole for deep infiltrating endometriosis

[lauravarn]

I'm looking for others who have taken aromatase inhibitors for endometriosis.

I've had 3 surgeries in the last 12 months and no other drugs have worked. Letrozole has given me some weird side effects - it would be good to hear if others have had any of these effects and how they manage them:

1: Carpal tunnel in both wrists, and trigger thumb and finer. The pain in my hands and arms unless I am in wrist splints is pretty bad.

2: tingling and paraesthesia in various places including scalp, legs, hands.

3: dizziness/ lightheadedness/ weakness

4: I am worried about mood dips on this drug.

Grateful for solidarity if anyone here can provide any. this drug feels like my last chance saloon.

[kavithanava]

Hello,

I am just about to start taking Letrozole and it is also my last chance! My doctor has asked me to take with calcium, magnesium and Vit d to protect the bones. Am very nervous about side effects. Already have carpel tunnel in both wrists. I have also had surgeries which don't seem to work so this is my only hope! Will let you know how it goes.

How long have you been on letrozole for now?

[lauravarn in reply to kavithanava]

Bad news: I had to stop. The carpal tunnel is so severe I've been signed off work. It also affected my spine so much I was walking with a stoop. I have occipital neuralgia, and weird symptoms of nerve inflammation in my feet too. I've been weepy, low, faint, and nauseous. I didn't have this before letrozole.

I lasted 9 days. Beware if you need to stop: no one warned me about the horrific bleeding this can trigger. I woke up to blood all the way down both legs to my knees, -and all over the bed, and passing my largest clots to date.

This drug felt properly toxic to me. Guess it's a hysterectomy at 35 for me now.

Gutted.