Is joint pain with Exemestane permanent, even after stopping?

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UAgirl
UAgirl Member Posts: 5

Has anyone discontined Exemestane but still have significant joint pain? 

I've stopped & started Exemestane twice, because the joint pain gets so bad. This last time, the joints in my hands & feet swelled so bad that I couldn't wear my wedding ring and some of my shoes became too tight. My hands were tingling and my fingers went numb as well.  However, even after stopping two weeks ago, the pain is still pretty bad and the swelling of my joints hasn't improved much. Is this permanent joint damage and the pain is my new normal? Or does it finally go away?

Thanks for your advice ladies :)

Comments

  • inks
    inks Member Posts: 746
    edited October 2015

    Have you tried staying off of it for a month? The exemestane side effects are supposed to subside when you stop taking it but maybe you did not take long enough brake. But I personally think your symptoms are from Zoladex. If side effects are too much you can stop Zoladex and just take tamoxifen. I had to have oophorectomy because of brca+ and my hands kept going numb at night and whenever I tried to grip something. Is your ring finger the one most numb?

  • doxie
    doxie Member Posts: 1,455
    edited October 2015

    I've had really severe arthritic pain while on exemestane. Over time it's subsided, especially after hand surgery. Now I have very little pain and am still on it. There is hope.

  • UAgirl
    UAgirl Member Posts: 5
    edited October 2015

    @inks, no I don't think I've taken quite a whole month off before, although I certainly plan to this time!  Even though it was pretty painful, I still went to ballet class last night (in fact, it was right after class that I wrote my post, I was so frustrated at having to leave class early because of the pain). However, I noticed today that the pain in most of my joints has gotten a little better - which is encouraging! Maybe I just need to keep moving :)

    I never considered that the pain could be from the Zoladex, although I don't know why. Maybe the Exemestane made the joint pain worse and I didn't notice it until then?  The numbness is usually in my pointer finger or my middle finger on my right hand...

    I have my oophorectomy on the 6th, which I am oddly excited about...mostly because I can say goodbye to the Zoladex shots.

    My oncologist did mention that after surgery we could explore either a start/stop regimen of the Exemestane or try a different AI altogether.  The side effects/risks of Tamoxifen scare me too much to try that...

  • inks
    inks Member Posts: 746
    edited October 2015

    I was on Tamoxifen for a year prior to the oophorectomy and once the ovaries were gone it took 3 months for my hands to keep going numb. And why I asked which finger is the most numb is because I saw a physical therapist and he diagnosed me with ulnar nerve entrapment (I was considering surgery, but it's way better now). Prior to all this cancer stuff I had some occasional symptoms of carpal tunnel. I think in my case the oophorectomy and exemestane just exacerbated the preexisting condition. But as doxie mentioned it does get better. And you are correct that exercise is the best for musculosceletal symptoms from the AIs. I hope you will feel better soon.

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2015

    Even after months still have some leg pain . It takes a long time.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2015

    I had the same problem with arimidex (joint pain/swelling), but exemestane is so much better for me. Funny how we all react differently to these &^$#@* AIs.

  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited October 2015

    I went from Aromasin to Arimidex to Femara with 1 to 2 months pause between them due to extreme pain. Now I'm disabled. What you need to think about is that the term "pain" doesn't mean that the aromatase inhibitor somehow affects your nerves to send pain signals to the brain where there is no cause for pain. On the contrary. Being on an aromatase inhibitor is like going through menopause in fast forward, with all the changes menopause brings to our bodies happening faster - osteoporosis, sagging skin, degenerative processes, aging in general. The estrogen HAS a reason to be in our body, and it's not just related to being able to have babies or not. It's also regulating a lot of other things in our bodies. Estrogen depletion causes degenerative changes at the joint level - it doesn't really matter which joint, they will be all affected, but depending mostly on your weight and main occupation, you will feel it worse in the joints that are most under "wear". Those will have the "tear". Right now I am disabled, and one of the causes of my disability was rapidly advancing osteoarthritis. Osteoarthritis is a degenerative disease, the disease of old age. My spine doctor told me in the very beginning (about 3 + years ago) that if he hadn't seen me he would have thought he looks at the Xrays of a 80+ years old. I was 50 at the time

    Not everybody reacts the same to the AI. Some are more affected than others. Nobody can tell you ahead of time how your body will react. I know ladies who breezed through the 5 years of AIs with minimal discomfort, and a couple ladies like me, who got the absolutely shortest end of the stick in the process.

  • readytorock
    readytorock Member Posts: 199
    edited October 2015

    I've found that on Exemestane, the joint pain reaches a peak a few months after you start taking it and then subsides from there to the point where it wasn't really bothering me at all.

    I had to stop taking it for about a month this summer, and it did take a while for any SEs to go away. When I started again, it was same - got to a peak and then was tolerable.

  • doxie
    doxie Member Posts: 1,455
    edited October 2015

    Another reason we experience more pain on AIs is because estrogen cushions our bodies from feeling pain. The loss of estrogen caused by the AIs allows pain to surface where it had been subdued before.

    Remember when we thought men were such babies when it came to complaining about pain? Now we know why.

  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited October 2015

    Absolutely, Totally forgot about that. Estrogen is the reason why women can go through birth pain without dying of shock, and why women can stand pain better than men. Estrogen and progesterone regulate opiate receptor densities in multiple regions of the brain and also activate spinal kappa opiate receptor analgesic mechanisms.

  • Professor50
    Professor50 Member Posts: 220
    edited October 2015

    I saw this thread and wanted to say that I have been off exemestane for 2 months and I can finally put some rings on my fingers. It took a full two months for the swelling in my knuckles to go down. But here I am wearing rings again! (My hips keep making popping sounds, but generally I am feeling SO MUCH better).

  • UAgirl
    UAgirl Member Posts: 5
    edited November 2015

    Ladies, thank you all so much!!! I truly appreciate it! It's so nice to have answers from women who are actually going through the same thing.


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