Off of AIs for 2 1/2 months, will the knee pain ever go away?

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

    I can see your hesitancy in taking another AI due to the addition of warafin. I wasn't aware that the AIs had such a risk for embolism. I know that tamoxifen does, which is why many pre-meno women take shots to shut down their ovaries so they can take an AI.

    Some women were reacting to a filler in the AI that wasn't in either another brand or in a different AI. Others more to a lack of estrogen. I think I'm the latter, though I wasn't on arimidex long enough for a true analysis. I stopped because of extreme dry eye, which came back on aromasin. It's a problem with production and/or release of oil in the meibomian gland in the eye lids somehow exasperated by the AIs, not sure it is caused by them.

    I would love to stop taking the drug at 5 years to feel estrogen again soothing my body, but suspect I'll be in the risk group advised to take it for 10 if pending research eventually shows a need. My Oncotype was quite high for my grade.

    Enjoy those crazy doxies. My favorite mix so far are the neighborhood doxie/golden retrievers.

  • SoLinda
    SoLinda Member Posts: 120
    edited January 2015

    Hi Doxie - yes, apparently AIs still present a risk for PEs, though lower than that of Tamoxifen. In my case, a ton of drs. decided it was better to be safe than sorry and kept me on an anticoagulant the whole time I was on an AI. They never did find out why I had a pulmonary embolism, but apparently we are all at risk for those (some more than others) because of cancer. It feels so good to be off both the AI and warfarin!!! But, I am not impressed with this recent pre-diabetes diagnosis, and am intent on pedalling myself ( on a stationary bike) whilst eating carrot sticks, all the way to Sao Paulo, ha ha! My BMI is at the upper limit of normal, and it looks like I will have to lose more weight to keep diabetes 2 at bay and also deplete my stores of estrogen ... It's a good thing I am not a fan of cakes, etc., but I will miss eating those Brazilian white rolls for breakfast (I do love wholewheat bread though).

    I am having so much fun with my doxies - they are big sweeties and all have their own personalities, that's for sure! Two of the pups have long hair like yours, and the others are short haired. My hubby and I just had a special crate made so that we can safely carry them all in our truck and be able to take them out into the "countryside - a.k.a. bush" where they will run and run ... I can't wait for that :-) I hope you enjoy your doxie, too!

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited January 2015

    The thing about Aromasin is the price. We have very good insurance and tamoxifen, letrozole, or anastrazole are all just $10 a month. But exemestane would be $75 a month. We can't afford that. Without insurance it would be $200-300 a month!! And that's for the generic! The brand name Aromasin is $1700-1900 a month!!

  • cowgal
    cowgal Member Posts: 833
    edited February 2015

    My situation with my knees finally came to a head at the end of January when one day I could no longer walk on one of my legs. Long story short, a doctor of physical therapy told me that he would order a MRI on the knee to try to give me some direction of what I needed to do since all along everyone had said that once I got off of the AIs my knee pain would go away and after 6 months of being off of them, I was still having trouble. The MRI showed that I have severe tri-compartmental osteoarthritis and a torn ACL. So I went to see an orthopedic surgeon (OS) and I told him I was pretty sure my other knee was at least as bad as the one that the MRI was done on. The OS took xrays of both of my knees and yes they were both at the severe rating and in all three knee compartments. He said that I would need to have total knee replacements in both knees. He said that I had been walking bone on bone and that my bones were badly bruised and that the reason I could not straighten my knees was because they physically were unable to being bone on bone. I had asked my primary care doctor a couple of years ago to let me have x-rays of my knees to see if anything was wrong and at that time, one knee was considered moderate and the other minor osteoarthritis. The OS said that the anticancer drugs can weaken muscles, tendons and ligaments. He also checked to make sure that I did not have any cancer in there, which I don't. We all already know that AIs can be hard on bone. I did have a bone scan about two years ago and that came out fine but they don't scan your knees, they look at your pelvis. Anyway, at this point, I am in physical therapy and trying to plan for my knee replacements.

  • SoLinda
    SoLinda Member Posts: 120
    edited February 2015

    Wow, Cowgal! So sorry to hear this news ... But, at least you now have an OS that is "on the ball" and that your terrible knee pain should be solved via knee replacements!!! All the best and I hope you will be able to have your surgery soon.

  • ktab96
    ktab96 Member Posts: 126
    edited September 2018

    My joints returned to normal after I stopped taking Femara and anastrozole

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