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Pain related to Letrozole

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hlaoroo
hlaoroo Member Posts: 2
edited April 2020 in Pain

I have been taking Letrozole for about 4 months now and am experiencing increasing pain in the joints. I am not sure if the pain is related to the medication or just because I am overweight and don't get as much physical exercise as I should. Can it take several months for the pain to kick in? I have had hot flashes, insomnia, and increased anxiety prior to this. The last week though I feel nearly crippled at times and have trouble walking due to pain in my knees and feet.


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  • alostlady2
    alostlady2 Member Posts: 1
    edited April 2017
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    My pain with Arimidex generic started about the 4th month. I switch manufacturers and that just gave me more side effects. My feet and ankles hurt the worse at first, then the hands and wrists.  Now it is knees, back and swelling. When I told my medical onco he told me " We are older now."   I told him "YES Five months"    Good luck


  • s3k5
    s3k5 Member Posts: 411
    edited April 2017
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    Hi, it is interesting to see that the oncologists downplay the side effects of the medications! Mine does it too! Painful joints is a side effect of aromasin inhibitors. We feel like we are 90 years old😄



  • Artista928
    Artista928 Member Posts: 1,458
    edited April 2017
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    The biggest SEs of the AIs is joint pain. That and other se's sent me back to Tamoxifen after a 5 week try. It was too much for just possibly a few extra % benefit. Mine doesn't downplay anything. If they downplay then what else could they be downplaying. I like my MO. Tells me straight up. I fired my first MO for saying something insensitive and stupid. With him it was about hair loss. He said we all lost hair as we get older. Look at me, I'm bald. I'd fire whoever says "we're all getting older"to a cancer se. So insensitive and so not for me.

  • hlaoroo
    hlaoroo Member Posts: 2
    edited April 2017
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    Thank you so much for the responses. The pain has been fairly steady the last 2 weeks. I was kind of hoping it would come and go. Did anyone else get any swelling as well?

  • bright55
    bright55 Member Posts: 146
    edited April 2017
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    hi important that you continue to exercise a small foot cycle to keep up circulation would be of benefit.It is very important that you try to reduce weight. Our body will produce estrogen in the fat cells so more body mass perhaps the side effects are greater.

    Try not to sit for too long....Use a timer alarm to ensure you move more often .

  • chisandy
    chisandy Member Posts: 11,237
    edited April 2017
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    Try experimenting with a generic letrozole from a different mfr. if your insurance won’t carry brand-name Femara (which is insanely overpriced). Although joint pain is the most common SE of letrozole, different mfrs’ generic formulations have different “inert ingredients” such as dyes, coatings, fillers, & binders, to which some people are sensitive if not outright allergic (the two are not the same). And by law, a generic need contain only 75% of the dose of the original patented active ingredient—so some generics can contain half a mg. less of letrozole itself and therefore might have slightly milder SEs (though still an adequate dose to be therapeutic). Roxane’s generic has the fewest inert ingredients (no dyes or coatings), then Femara, then Teva’s generic.

  • DenaT
    DenaT Member Posts: 2
    edited July 2017
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    Hi. I am taking Letrozole and was having awful pain all over. Well I quit taking it for a couple of months to see if I would feel better and yes I felt so much better. I told my Dr how much better I was feeling but of course I had to get back on it and the PAIN is BACK. My hands, Feet, Shoulders and Hips hurt:( Will our bodies ever get use to it?

  • Lily55
    Lily55 Member Posts: 1,748
    edited July 2017
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    Reading your posts makes me really angry, there ARE alternatives for you that have the hormone blocking effect.  I was terrible on letrozole, felt really aged, could hardly move, terrible hips, needed help out of a chair then had heart problems.....breathlessness and so I stopped taking it, without my Oncologists knowledge.  I went to a private Doctor at a leading cáncer hospital and he told me that Anastrozole and Letrozole both work in similar ways but that Aromasin (Exemestane) works differently. He said I should take nothing for at least a month (I had taken letrozole for almost a year before I gave up) and then try taking Aromasin.  So I did that and here I am 4 years on.  I actually waited more than a month and then I took a natural anti inflammatory for a month first and I still take that anti inflammatory (boswellia serrata) every day and have far fewer side effects.  I also make sure I exercise as not exercising makes me worse, ven if it is just a walk and I am trying to lose a stubborn 14 lbs that puts me just over the border in to overweight on my BMI (although I only need to lose 4lbs to get in to normal range).

    Please ask your Doctor if you can change to another one...........they all have side effects but one of them will suit you more than the others, exercise regularly, take Omega 3 and try and lose any excessive weight as all will help you........but I know it is not easy.

  • DenaT
    DenaT Member Posts: 2
    edited July 2017
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    Yes. I have gained 15 pounds since I was diagnosed with breast cancer August 2016. I am hoping losing the weight will help, but it is so hard to get back into exercising when your body hurts so bad. I am definitely going to ask my oncologist to change my meds although he did tell me Letrozole had the least side effects (ugh). I have hurt since my radiation treatments. When they did my genetic testing it came back that I had the ATM gene which they say does not respond well to radiation(Pain). The ATM gene increases my chance of breast cancer(which i got) and pancreatic cancer :(. Almost wish that I had never done the genetic testing :( I just need to get my butt in gear and exercise.

  • sandyincalifornia
    sandyincalifornia Member Posts: 3
    edited June 2018
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    I too had pain from generic Femara (Letresol). I was put on name brand (Femara). that took care of pain. Now I took the Femara for 7-8 years post surgery. I now have osteoperosis which has gotten worse the last two years. I took Fosomax for about 6 months but was very uncomfortable taking it.....worried about the possible side effects.  

  • BarbD
    BarbD Member Posts: 5
    edited July 2018
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    i too am having severe pain in my bones and joints. It pretty much started shortly after taking the Letrozole and my onc concurred it is the cause. He gave me little optimism that it will subside. But here is my question. On another site someone questioned rather than taking the drug that causes so much pain, why not have a hysterectomy .. Wondering if anyone ever heard of doing this

  • gailmary
    gailmary Member Posts: 426
    edited July 2018
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    having a hysterectomy is not enough. Our bodies continue to make estrogen from body fat and adrenal glands i think. But what i dont get is why dont the drs test our blood to see how much estrogen we do have? Maybe we just could use less letrozole so we'd get fewer side effects. I heard some drs have patience take a pill every other day.

  • Lula73
    Lula73 Member Posts: 705
    edited July 2018
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    Hi Ladies! Yes the AIs and tamoxifen cause joint/muscle pain that can be downright debilitating. Curcumin supplements are mentioned by many of us to help with the pain. If you're not currently taking it, you may want to give it a whirl. I recently had to miss 2 doses of all my pills and by the 2nd morning I could barely get my hands open and other joints/muscle were hurting all over. That told me all I needed to know about how much the curcumin was helping. I took it as soon as I could make it to the kitchen and within about an hour or so most of the pain was gone. I do have a little stiffness in my left hand in the mornings even with the curcumin but after flexing it a couple times it goes away. I use the Solgar brand as it has higher bioavailability than most and works faster.

    image

    Here's a link to the rundown on why having a hysterectomy or oophorectomy doesn't mean we can stop taking AIs or tamoxifen.

    https://community.breastcancer.org/forum/78/topics/726592?page=318#post_5169844


    On the topic of changing up the dosing, read the synopsis on the dosing studies that i posted on the Femara page earlier this year first so that you can make a fully informed decision.

    https://community.breastcancer.org/forum/78/topics/726592?page=319#post_5171063


  • LisaBS
    LisaBS Member Posts: 13
    edited September 2018
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    I feel the same way! Are you able to work and sleep? I feel if I do too much i start feeling sick or runner down.

  • ondeck
    ondeck Member Posts: 1
    edited October 2018
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    On letrozole for l 1/2 years also take verzenio for mbc and (xgeva inj for osteoporosis)

    which is exacerbated by letrozole . Pain unbelievable in rt upper arm and now diagnosed with glaucoma no family history.

    So tempted to stop chemo meds. Does anyone have experience with cbd oil?

    Thanks!

  • CGoodenough
    CGoodenough Member Posts: 1
    edited April 2019
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    I started taking Anistrozole in Feb. of 2018. My onc suggested this as I have always worked out/lifted weights etc., and she believed that made me a good candidate for this drug. In addition I started taking a D-3 supplement. For about 8 months, it seemed to work, although I immediately could not sleep through the night (I had never had this problem) and began to gain weight. About 8 months in, my right shoulder began to hurt and I thought I had injured myself at the gym. I had my PT/massage therapist work on my rotator cuff to try to rehab it. In another few weeks my other shoulder and knees began to hurt. Then it was my wrists. I was pretty sure it was the Anistrozole, but made an appt with my internist to rule out Lyme Disease (I live in the northeast and have had this before) as well as rheumatoid arthritis. Everything came back normal. So now on Monday, I am going to see my onc again and make a plan. I do not believe I can continue on with this med. Suffering for 6 more years to possible extend my life does not make sense to me. I am will to try another drug, but not sure I will have better luck on a different one. Perhaps, Aromasin? Has anyone here, considered stopping therapy and just eating well, exercising, drinking moderately and living a healthy life style? Interested in others thoughts.....thx!



  • mavericksmom
    mavericksmom Member Posts: 1,128
    edited April 2019
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    I just flat out refused it! That said it isn't as if I am confident in my decision. I'm scared.....and angry that this is our choice, living in pain, with worse health, higher cholesterol, more risk of Alzheimer's, weight gain, etc for a hypothetical longer life!

    We shouldn't have to choose! We need to start pressuring the research community to find a new drug that DOES NOT rely on diminishing estrogen to prevent recurrences!

    The side effects have less to do with the AI used and more to do with the depleted estrogen. In other words, the drugs prevent estrogen formation which feeds estrogen positive breast cancer. But, our bodies, even after menopause, need estrogen to function well, which is why our bodies continue to make it in our fat and brain cells!

    I'm choosing quality of life over quantity which totally sucks!

    BTW, I already have two replaced shoulders and a family history of Alzheimer's. If I have bone pain I can't second guess if it's from Letrozole or not. I watched my mother die a slow death with time slowly robbing her mind. Being the youngest child in the family, she forgot who I was first. It was heartbreaking! I need all the estrogen I have in my brain!

  • Tess1962
    Tess1962 Member Posts: 4
    edited April 2019
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    I recently made the decision to stop letrozole. I was on it for 6 months. I started having joint and bone pain, severe headaches, and gained a bunch of weight. In December of this last year I had a hysterectomy. I decided to stop the letrozole. I've been off of it for about 3 months now. My joint pain has disappeared and my sleeping is back to normal. I've lost 12 lbs. I am not going to go back on this drug. I feel like my quality of life is so much better. Everyone has the right to their own decision on their treatment plan and I am glad I chose to stop this drug. My Onco wasn't thrilled but he said my chance of recurrence was slight and with the hysterectomy done he was ok with my choice. I don't have the brca 1 or 2 genes. My oncotype score was less than 10.


  • Tess1962
    Tess1962 Member Posts: 4
    edited April 2019
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    Are you "really angry" because she stopped letrozole or because she wasn't given a choice of another drug? I feel it's each persons choice with their treatment. I stopped letrozole too. My quality of life was horrid. I didn't know thEre was a choice though so I will ask my onco..

  • idahoflygal
    idahoflygal Member Posts: 27
    edited August 2019
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    DenaT,

    I am feeling the very same way. I took Tamoxifen for 5 years and then was switched over to Letrzole. I've been on that for 2 years now and I feel like I am 100 yrs old. I hurt all over with achy joints from my hands to my feet. This past week, I started having some discomfort/aches in my right hip, lower back and tailbone. Walking actually feels OK, but sitting irritates it. I'm not sure if I strained my back, it's Letrozole or something else. I'm trying to not worry about it, but it's hard not to. I'm supposed to see my Oncologist in October for my annual follow up, so I think I will bump it up and see her as soon as possible and see what she thinks about my back.

    I have been pushed to have genetic testing because of my family history. My maternal grandma had/died of BC, my mother died of BC, then I got it. I have 3 paternal aunts with it as well, 2 living. I finally had enough and decided I didn't want to have more "cancer possibilities" to worry about. We don't have kids, so it would be mostly for statistical data. I already see my Oncologist every 6 months and for the next 3 years, see my PCP each year, and do everything I can to live a healthy life. I just know if they mentioned I could develop kidney cancer, etc., I would be constantly worrying about that. So, I totally understand how you feel about genetic testing.

    I am praying I make it 3 more years and can get off Letrozole and can't wait to see what it will feel like not taking this drug. My Oncologist says the SE's should subside within 4-6 weeks. Counting the days as I am sure you are!!

    Blessings :-)

  • SarasotaLady
    SarasotaLady Member Posts: 11
    edited October 2019
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    I have to make a decision whether or not to continue letrozole. I know that's a very individual decision, but it would be helpful to know the following from those who care to respond: :

    If you've had significant side effects with an AI... letrozole , arimidex, whatever.. and stopped taking the med because of those side effects after about 2 years... did the side effects diminish? Did you feel your quality of life was restored, or did the side effects linger despite stopping the med?

    Many thanks in advance. .

  • Daylightdancer666
    Daylightdancer666 Member Posts: 30
    edited October 2019
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    Have you been prescribed any pain relief for aches and pains or xxx

  • Artista928
    Artista928 Member Posts: 1,458
    edited October 2019
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    It's hard to say if lingering ses is from letrozole or not. I stopped at 5 weeks. Should have stopped sooner. Quality of life matters especially since we don't know if anything works. There's no conclusive test like there is for bp, cholesterol, etc. I went back on Tamoxifen and I tolerate it ok. Since nothing is for sure I'm at peace with my decision. My mom went a year and stopped. Her ses linger. At 75 it probably will due to aging on top.

  • spookiesmom
    spookiesmom Member Posts: 8,168
    edited October 2019
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    Was on aramidex 4 years. Joint pain made me stop. Tamoxifen for about 7 months. Joint pain again.

    Now stage 4 on letrozole and ibrance. Joint pain again. This time I’m taking Claritin. Yes, the allergy med. Non drowsey.

    It works.

    My back and knees don’t hurt. My feet don’t hurt as much as they did, I can walk normally without limping.

    I know it sounds crazy, the MOs, if they even heard of this, don’t know why.

    I need to stay on this combo as long as I can. If Claritin will help me, I’ll do it.

  • Artista928
    Artista928 Member Posts: 1,458
    edited October 2019
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    regular claritin did help with bone pain from neulasta shots.

  • SarasotaLady
    SarasotaLady Member Posts: 11
    edited October 2019
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    ive taken Aleve, which has helped me sleep somewhat. . Will be trying CBD:THC. 1:1. In a week or so.

  • SarasotaLady
    SarasotaLady Member Posts: 11
    edited October 2019
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    Thanks Spookiesmom. I tried claritin during chemo for lymphoma, with no results. I'll ask my MO if I can take letrazole less frequently or at a lower dose. Will also try try CBD:THC this week.

    .

  • cbk
    cbk Member Posts: 323
    edited October 2019
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    Sarasotalady.

    CBD is a game changer. You don’t need THC. High quality CBD oil; I’ve used Endoca and NuLeaf. I was blown away with the response in my body.

    Reduced hot flashes, joint pain severely diminished, mood swings and overall anxiety totally decreased.

    The most difficult part of my treatment was losing my ovaries and the aftermath combined with Arimidex! I tried everything... CBD far and away amazed me!

    I wish you luck the side effects can devastate you. I was in that camp!

  • kcrd4766
    kcrd4766 Member Posts: 15
    edited October 2019
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    Yes, ditto for turmeric/curcumin! And, forms that are hydro-soluble absorb better. As the PP mentioned, it is important to look into the absorption.

  • Texasborn
    Texasborn Member Posts: 4
    edited January 2020
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    I have been taking letroloze for one year. I have just started having horrible pain in my hip, knee and ankle on one leg. I too thught I was overweight and in active. But now I think it is something else. I will see my OD soon and check into changing my medicine.