Is anyone taking letrozole and have side effects

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Comments

  • Emaya1
    Emaya1 Member Posts: 1 *

    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
    glendad Member Posts: 3 Member

    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
    elicitjeans Member Posts: 8 Member

    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
    oldgirl Member Posts: 6 Member

    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
    kderito Member Posts: 3 Member

    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
    happygrandmother Member Posts: 1 Member

    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
    Maudia Member Posts: 3 Member

    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
    glendad Member Posts: 3 Member

    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
    oldgirl Member Posts: 6 Member

    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
    holdmybeer Member Posts: 3 Member

    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
    swomble Member Posts: 1 *

    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