Is anyone taking letrozole and have side effects

Emaya1

Hi,

I started on letrozole and had pretty bad joint pain/stiffness, hot flashes that could melt winter away and slept maybe 1 night out of 14, but initially I thought I just had to put up with it. Apparently I have a great oncology staff as it was their idea to let me try anastrozole (a little better) & now Exemestane/aromasin (don't know how it will be yet) to see if we can get the joint stiffness down. I have many old sports injuries and the worst of the stiffness seem to attack those areas the most, however I am determined to do whatever is necessary to try to stop cancer in it's tracks & no matter what, will keep taking whatever medication has the least of the side effects. Also, it sounds like I may be one of those people that got carpal tunnel from the meds as it came on with no warning & rapidly developed to surgery level to get my fingers working again. If anyone has constructive ideas to help with side effects, other than stopping taking the meds, please share!

glendad

Emaya, I was on aromatase inhibitors in 2016. I ended up stopping do to side effects. The cancer showed up again this January and I am back on letrozole. I have not had any joint pain this time around but I do cardio and weights clases at the gym. I also have an issue with bed soaking night sweats and inability to sleep. The Dr put me on effexor and it helped a lot. There might be other drugs as well they can use.

elicitjeans

I have ALL of these symptoms and my treatment has yet to be started! I almost fainted last week just walking my little dog outside in the late evening. I literally had to lay down on the concrete while talking with the neighbor. I laid there a good 15 mins just trying to recover from the dizzy spell. I acted as if nothing I was doing was abnormal. I am sure she was like um...??? what are you doing?? LOL I am so uptight from reading on this site now all of the side effects from these drugs. I guess as pointed out above, this is something I definitely need to bring up on my next visit with oncologist. Write down your questions and take the list with you! My mind blanks out if I don't do this so it may help others plan ahead... I gave my list to the APRN for the surgeon. I am headed to surgery @ the end of August and will go from there. UUUGGGGHHHH! 😇

oldgirl

I'm in the UK and changed brands a couple of times (night sweats) now I'm taking the Accord brand of letrozole and I have a chronic cough and my left arm is too painful to move for a while after I get up in the morning. Apart from that I'm fine. And I'm on them for 10 years apparently - and I'm already 78!

kderito

I had started May 31st with Letrozole and I puffed up chin ,belly, arms. Then the leg and joint pain was horrible. I could barely walk, I had to hunch over. There were hot flashes every 20 minutes. I am type 2 diabetic and sweats come with that every now and then. Tired and depressed all the time and bouts of crying.

I was only taking it every other day. I stopped in June and my oncologist gave me a month to get it out of my system. I’m still not totally over this. I don’t think I want to fill my body with this crappy drug with the side effects.

happygrandmother

I have been on Letrozole since January of this year. I have gained 15-20 pounds and I am tired all the time. When I take my pill I usually fall asleep on the chair watching tv for a half hour or so. I do have a lot of joint pain and hot flashes. Some of the joint pain could be from me having arthritis and osteoporosis. I am not happy with this pill but the doctor told me I should be on it at least 5 years

Maudia

I was on Letrozole from 11-22 until 5-23. Experienced hot flashes (not pleasant but not unbearable), weight gain (belly primarily), insomnia, joint pain, and depression. Oncologist put me on a 30 day drug vacation and the symptoms cleared within days. Started on Tamoxifen 6-1-23. At first I thought I had finally found a drug I could tolerate but the longer I take it, the more side effects. The hot flashes are a 10 out of 10. I also have excessive sweating, as I can be standing at the counter mixing a cake mix and I sweat so profusely that my t-shirt will become damp and I feel awful, then clammy/cold. I also have insomnia which I had thought might be caused by a hot flash but am pretty sure it is just insomnia from the medication. Plus I am grumpy - to the point where I can even notice it in myself. So I will be calling my oncologist to ask about stopping it. It is a quality of life vs risk decision but I think I have made my decision. I have read that some people don't have any side effects or very minimal, and I think they are so very lucky, and seemingly so very few unfortunately.

glendad

Talk with your Dr. I have been through all the side effects and more. I lasted one year. I tried all three arromatase inhibitors. That was 7 years ago. I was told I had to learn to live with no sleep. 7.5 years later I had a distant recurrence. I am back on arromatase inhibitors but it takes two drugs to manage the side effects. It is really a personal choice.

oldgirl

This is very depressing. I’m having bad pain in my left arm particularly. And my back’s hurting. Only 9 years to go!!

holdmybeer

Have you talked with doctor about a dietician consultation or any medications that would help? I have been on Letrozole for 7 years and will occasionally get joint pain flares. Randomly, but weight barring exercise seems to help. When I have them I up my weight training in the area. Also, many folks get results from a KETO diet but I would consult my doctor and or a dietician. I hope you get some relief.

swomble

I just completed the 9th of 16 radiation treatment for Stage 0 DCIS. I have not started the Letrozole yet, I have to take it for 5 years.

Thank you for sharing.

Im praying for our complete healing.

God bless