Letrozole (femara) & stiff joints

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AnnieLNZ
AnnieLNZ Member Posts: 23
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY

Has anyone experienced stiff joints - especially their spine when on letrozole? I've been on letrozole since February and just recently my low/mid back is very creaky & feels 'thick' when I move it. I've checked with my MO re whether this is progression, healing, or just my dodgy back. She says it's highly likely to be a side effect of the letrozole. I've had achy hands and knees with the letrozole but this is new. Any one else have something similar or SEs that start after 6 months or so?

Thanks :)

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  • BevJen
    BevJen Member Posts: 2,523
    edited July 2019

    I was on letrozole from 2006 until just recently. Over the years, I had stiff joints, stiff back, ankle issues (tendonitis) in both ankles at different times, trigger finger, hair thinning -- just about everything. They didn't all come at once, and they left when they were ready, I guess. Having said that, if it persists, I would probably ask your doc if you can be imaged (especially if you are not imaged regularly). Better to be sure.

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  • AnnieLNZ
    AnnieLNZ Member Posts: 23
    edited July 2019

    Thanks BevJen - good to hear your experience with letrozole SEs. I guess as our bodies adapt and get used to the changes brought on by the medication the SEs will change.

    I have degenerative disc disease in my lower back (non-cancer related) so expect that is most likely making things worse. Horse riding and gardening probably don't help either :) My TMs have been steadily decreasing and my last lot of scans showed stability and signs of healing in the bones - so all things considered it is probably a combo of SEs and my dodgy spine. I'm not due for another scan for a month, but will ask for an earlier one if things don't improve or get worse.

    Thanks again for your response - this forum has been such a lifeline for me. It's so good to know there are other awesome women out there going through the same things.

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  • BevJen
    BevJen Member Posts: 2,523
    edited July 2019

    Last year, while on letrozole, I had pain in my lower back and right hip. I, too, have lots and lots going on in my discs and my spine. I actually went to physical therapy for several months while on letrozole and because some of my issues were also non-letrozole, as it sounds with you, the PT helped me a lot -- mostly in reminding me how to bend, get out of bed, turn when doing various things, etc. It really improved my situation tremendously, so that's another way to help your situation. I would say that despite the potential for pain with letrozole, over the years I always did better when I kept up some activity rather than when I didn't do anything.

    Good luck!

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  • Vicky64
    Vicky64 Member Posts: 2
    edited July 2019

    Letrozole is absolutely terrible. It led to Rheumatoid Arthritis in my knees and wrists and took 10 months to get out of my system. I have RA now, possibly exacerbated by that, and am on Plaquenil. Avoid it in favor of Tamoxifen.

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  • Moomala
    Moomala Member Posts: 436
    edited July 2019

    I'm so glad you finally gave me the word "thick" to describe what my back feels like. I have several compressions fractures and bulging discs in my spine along with lesions from Paget's Disease (a benign metabolic bone disorder) and from mets in several areas. My back is healing slowly but I've had very little pain...other than sciatica and some other nerve issues, just a strange feeling, such as being able to feel my spine when I lean back in a chair or in the car. Thick is the perfect word to describe it!

    I'm on letrazole too but I've only been on it since April. I have had so far aching hips and legs but it is much much better if I keep my exercise going every day. Right now I'm walking about two miles a day and that's helping a LOT. PT showed me where I'd actually changed my posture and my gait to avoid the weird sensations, the stiff and thick feeling, and they have me on some stabilization exercises at the moment which are also really helping.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited July 2019

    I’m on letrozole Ibrance Lupron and Xygeva

    I am not certain what is causing what but I think I may have developed peripheral neuropathy on the bottoms of both my feet (painful, sometimes itching - right in the center of the foot, with a lot of difficulty walking when first standing up after lying down or sitting), my back is definitely starting to degenerate maybe from a combo of the lesions that were in my spine and now the meds? And I have developed trigger finger of my right thumb.

    I’ve been on these meds since April 2017.

    I feel like I am grateful that the meds have brought the cancer into a place of stability but I am hurting :-/

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  • AnnieLNZ
    AnnieLNZ Member Posts: 23
    edited July 2019

    Thanks for all your replies - what a wonderful community of women!

    Vicky64 - I'm sorry to hear of your RA - that must be tough. Tamoxifen is a no go for me as I was on it for ten years post my initial diagnosis.

    Moomala - Looks like you're a newbie to MBC like me. How are you getting on? I was diagnosed in Feb and it's been quite the rollercoaster. I hope you're doing OK. I agree exercise is key - not only for the body but the mind too. I live in rural Hawke's Bay, New Zealand and have two rumbunctious dogs who I take hiking most days. It's the little things at times like this.

    LoveFromPhilly - I've just started Xgeva. Second injection due in a fortnight. The peripheral neuropathy doesn't sound great but like you I'm grateful for the meds as without them who knows where we'd be.

    Thanks again for your replies xx

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