struggling with pain on Letrozole

Options
cm2020
cm2020 Member Posts: 615
edited September 2020 in Hormonal Therapy - Before, During, and After

I have been on Letrozole for a few months (stopped for 6 weeks during radiation). For a week now I have been in pain. I ache all over like you do when you have the flu or have worked out too hard. It is unrelenting. In addition to that I have constant lower back pain. I can't take NSAIDs due to chronic hives so I am not taking anything to help this pain/aching. I did start doing regular gentle yoga (OMG....I am SO stiff! i used to be quite flexible it is disheartening to see how tight I am now). The pain and the aching are not made worse by yoga but I am also not getting any relief. I stretch regularly and try not to stay still for too long but moving takes so much effort and hurts that it is hard. After a week of this it is really starting to get to me. I move like a 90 year old woman, I hurt, everything takes so much more effort. I am in tears just describing all this. I do see my primary physician for a physical next week. I don't see my oncologist until December. I am blaming all of this on Letrozole, however, the longer the lower back pain continues the more it is starting to make me wonder if I have metastasis of the cancer (which seems unlikely but who knows).

I just needed to vent this to people who understand and who get it. I know there is probably no advice for me and I understand that.

· Share on FacebookShare on Twitter

Comments

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited September 2020

    I've been on letrozole for over a year, no major problems. The 4 th year I was on aramidex and the 7 months of tamoxifen after that, I thought I was headed for a wheelchair the pain was so bad. We are all different, with different reactions to the meds. Ask, or call the first dr you see if you can switch to something else.

    It’s easy for your mind to go dark places now with new aches and pains. Be sure to mention back pain, a mri can rule out ca. Mine flares up, mri shows a lot wrong, but not cancer.

    · Share on FacebookShare on Twitter
  • PurpleCat
    PurpleCat Member Posts: 358
    edited September 2020

    It's definitely not just you. Letrozole made me miserable for the 3-4 months I took it. Joints so stiff and painful I felt about 90 years old. I've been off for about a month as a test, and my joints are still stiff but not so painful. I'm going to switch back to tamoxifen, which I know I can tolerate, rather than mess around with any more AIs.

    · Share on FacebookShare on Twitter
  • Krose53
    Krose53 Member Posts: 148
    edited September 2020

    I was on Letrozole for a year. I started a month after finishing chemo. I was miserable. I had horrible joint pain in my hips and hands but mostly in my lower back. I was in pain 24/7. I never had a moment without pain. I couldn’t bend over or even shave my legs. I also had general all over stiffness. I lived on a heating pad. Believe me I tried everything, diet, exercise, turmeric, OTC pain meds. I also had a very strange and rare side effect of episode of slurred speech, dizziness, nausea, and fainting or feeling as if I might faint. I tried Arimidex and my fainting episodes resolved but the joint and back pain continued. 4 months ago I started brand name Arimidex. I feel like a new person. I do have insomnia but dealing with that. My life is normal again. Different people react differently to Aromatase Inhibitors. Don’t hesitate to try others until you find the one that’s right for you. Good luck!

    · Share on FacebookShare on Twitter
  • Kleenex-123
    Kleenex-123 Member Posts: 2
    edited September 2020

    I have taken letrozole for almost 4 years. I have not had any side effects except hot flashes

    · Share on FacebookShare on Twitter
  • cm2020
    cm2020 Member Posts: 615
    edited September 2020

    Thank you all for the reassurance that I am not alone in dealing with this significant pain. Krose53...The speech and fainting episodes are scary as hell! I am so sorry you experienced that. As for not being able to bend over, I am right there with you. Even rolling over or going from one position to the next is filled with pain. My hands keep falling asleep too and are definitely weaker than normal even when not falling asleep. I'm glad you have found a med that works much better for you.

    Spookiesmom....You know prior to experiencing this amount of pain I would have never imagined pain bad enough from hormone suppression to land one in a wheelchair. I was wrong. While I am not at that point, I can absolutely see how you could get there. I'm very happy you are doing better and found a med that you can tolerate. You are right, we are all so different, and how we respond to these drugs is quite individualized. I do plan on talking to my MO (and my primary since I see him sooner) about all of this.

    PurpleCat...I don't blame you for going back on Tamoxifen instead. Unfortunately I can't take it due to another med I am on (contraindicated to be on both). So I am stuck with AIs, but I am hoping if this pain doesn't improve, I will be able to find one of the other ones that works without making me want to curl up and die due to the severe pain.

    · Share on FacebookShare on Twitter
  • Francesca30
    Francesca30 Member Posts: 82
    edited September 2020

    Hi @cm2020 , I’m about 10 months on Femara. The first few months were so tough. I had aches and pains all over my body, I couldn’t go down the stairs properly each morning because I was so stiff! But now, my body is tolerating it better . I’ve learned that the more I exercise or move and stretch, the aches ease up . Although I still have some lower back/ tailbone pain that comes and goes

    · Share on FacebookShare on Twitter
  • Mountainlover
    Mountainlover Member Posts: 89
    edited September 2020

    I have been on Femara for not even 2 months. After 4 weeks I started to experience significant pain in my legs, to the point I couldn't sleep. With my doctor's blessing I tried turmeric. Not sure whether it was a coincidence but the pain has significantly decreased. I'm exercising about an hour per day (mostly walking but also chi gong, tai chi and resistance training) and, like Francesca, I also find that aches improve with exercise. My main problem now is insomnia, for which I will soon try hypnosis. If that doesn't work, I'll give acupuncture a try.

    · Share on FacebookShare on Twitter
  • cm2020
    cm2020 Member Posts: 615
    edited September 2020

    Francesca30.....I know what you mean about the stairs, I limp up and down them hanging on for dear life. I'm glad you are doing better. Do you happen to have any idea when things started getting a little better? It is encouraging to know that you did improve and have been able to stay on the med. It seems like the key to managing the pain and stiffness is exercise. I have been faithfully doing yoga the last few days and plan to keep it up. I was doing walking/cardio for exercise but the pain has been so bad that I had to stop because I just couldn't manage the pain. Yoga seems to be what is best right now. I do hope to eventually be able to walk again. At this point I just desperately want some relief from the unrelenting pain. Thank you so much!

    Mountainlover.....Thank you for the turmeric recommendation. I will look into it. Thank you for sharing exactly how long you exercise each day and what you do. This is such good info (that everyone has shared!) and I will definitely be taking the suggestions and incorporating them into my daily routines. The pain has either kept me up or woken me up quite a few nights...it is awful isn't it? I'm glad that you are getting relief and doing better. I take melatonin for sleep. I start with 10mg each night and then if it doesn't work, or I wake up in the middle of the night, I take and additional 5mg. It isn't perfect, but I am getting more sleep as long as the pain doesn't wake me up or keep me up.


    · Share on FacebookShare on Twitter
  • cm2020
    cm2020 Member Posts: 615
    edited September 2020

    I wanted to provide an update for anyone that may be following this or happen upon it in the future with the same miserable pain. I have been faithfully doing yoga every day. It is slow, gentle, and not as long as a typical yoga class would be--my hope is to work up to longer sessions as I am become stronger/feel better. It has not been easy most days to accomplish this, but I have been faithful. I have noticed over the 2 days that my pain, while still present, isn't nearly as bad as it has been. I am not quite as stiff (except for first thing in the morning and after sitting for a bit) either. I realized after grocery shopping this morning that my pain wasn't any worse than it had been prior to starting. All of this to say....yoga is life changing for AI pain! It has been amazing to not be in the almost crippling pain that I have been enduring. Yes, I still hurt (esp lower back), but the improvement has been amazing, and I am hopeful that the pain and stiffness will continue to improve. My balance and flexibility are also improving. Thank you all again!

    · Share on FacebookShare on Twitter

Categories