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For Arimidex/Anastrozole new, past, and ongoing New

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  • jnu3
    jnu3 Member Posts: 56
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    Total right knee replacement 6/21/16. Have continued my anastrozole along with my calcium, D3, CoQ10, B complex etc. Have been doing fine and not noticing any additional discomfort that is not related to recovery.

  • TallnTerrific
    TallnTerrific Member Posts: 18
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    I am new to this board, but I have had a couple of strange reactions related to taking and getting off anastrzole and I wondered if others have had this combination of reactions. When I first started taking it I soon felt a burning in my hips, butt and thighs all of the time. I have compared the sensation to being at the end of hard exercise and feeling that burn in your muscles that seems to stop your ability to perform. The burn is especially troublesome at night when I am trying to roll over in bed as the pain is very strong, wakes me up and I feel almost too weak to roll over.

    After 4 months of this and other side effects, my MO took me off the anastrzole. I am now a month off and the burning pain continues. however for the last two weeks I have also had unexplained breakout of hives every night from my breasts down to my inner thighs and under my arms but only on the front of my abdomen. I can control the hives with Benadryl but they come back every evening.

    I started with research to discover what causes the burn during exercise to learn more. Some articles indicated the burn was caused by Heat Shock (stress) Proteins (HSP) that are released to help the muscles avoid damage when they were oxygen deprived. I then sought to find a connection between these HSPs and cancer. Voila, I found in people on AIs for breast cancer that the elimination of the estrogen in the cells could act as a stressor that also caused the release of HSPs to avoid cell damage. Consequently in some people the HSPs counteracted the AIs and continued to allow for the fast growing cancer cells. Oddly enough this could result in an inflammatory response that caused the release of histamines. And what do excess histamines cause? Yes they can show up on your body as hives.

    No article I have seen has drawn this connection, so I am wondering if anyone else has had a combination of the burning/weakness in their muscles and hives while on or off of any AI medication. Any help would be so appreciated.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    I've have new burning in my left hip. REALLY bad. Enough that I was going to ask for a scan or something. Now I'm wondering if it's the Arimidex. I've only been on it for 4 months. I can't even walk with it and I'm on Tramadol and Tylenol 4's for my back, so how the heck bad is it that the pain breaks through!!!!

  • TallnTerrific
    TallnTerrific Member Posts: 18
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    there is another person on another thread I am going to invite to this thread. Perhaps we can learn from each other. Thanks barbe1958

  • brutersmom
    brutersmom Member Posts: 913
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    I have had the back, hip pain and burning in the thighs. I stopped ALs and it continued. I got some relief from a chiropractor. My BS suggest bladder issues or vaginal dryness. I started using Replens and the pain went away in about a week. I noticed that it starts to return if I forget to use it. Just a thought.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    How could a dry vaginal cause hip pain????

  • brutersmom
    brutersmom Member Posts: 913
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    I have no clue. It might have been a coincidence. I could understand the back pain. I don't know if the effect is cumulative and one leads to another or generalized inflammation that becomes cumulative. I just know the burning pain in the hips and thighs was almost debilitating and now it is gone. It starts to come back after a couple of days if I forget to use Replens.

  • TallnTerrific
    TallnTerrific Member Posts: 18
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    Brutersmom that is so odd. I am glad to hear that someone else has the same pain. I just got a sample of Replens. Perhaps it is worth a try. I don't feel I am suffering from dryness but anything is possible.thanks for the info. By any chance do either of you also have osteopenia

  • barbe1958
    barbe1958 Member Posts: 7,605
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    My BMD test years ago show I have very strong bones. I have no idea where they are now, but can't see why they would have dropped. I'm on Arimidex now and know it will affect my bones in a couple of years.

  • brutersmom
    brutersmom Member Posts: 913
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    I saw a new MO today. I could not stand my original MO. I came away from appointments and was depressed for weeks. This new MO was so positive and upbeat. One of the first things he asked was if I was experience vaginal dryness or back and hip pain. I said yes and then he proceeded to tell me that I should treat for vaginal dryness because it can lead to very sever back and hip pain. I said I already did that and it found the pain went away. We talked about other treatment plans and side effects. I found this visit to be hopeful and encouraging. This is how all Dr.'s should treat their patients. I enjoyed is one comment. He loves to here that there are side effects as long as they don't interfer with quality of life because it tells him the drug is working and he can avoid blood and other test.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    I don't get it. I Googled "vaginal dryness and back pain" and nothing came up. Having sex with a dry vaginal can cause a lot of pain - in the vaginal area - but that was the only consensus.

  • Irish65
    Irish65 Member Posts: 4
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    During perimenopause I've suffered from chronic yeast infections (being diabetic didn't help either) like clockwork every month. It took me a year or so to connect the two, but finally that my chronic hip pain (which I saw a chiropractor for for months) coincided with the yeast infections. Now I can tell when I am getting/have a yeast infection as soon as the hip pain begins. I've mentioned it to a couple of my docs, including my gyno and no one had seemed to ever hear of it. I thought it was just me. But then again, if they weren't chronic, I never would have put 2 and 2 together. As it was it took at least a year to notice the connection.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    OMG if my back pain is as simple as Replens or something I would be in heaven!!!!!!!!!!!!!!!!!! I don't think I even have vaginal dryness (no problems), so what would I even use?

  • lemint
    lemint Member Posts: 76
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    Hello ladies hope everyone is having a nice day. Just wondering if anybody had any advice for me. I started Anastrozole about 2 months ago and within the last 3 weeks have developed tingling, sensitivity and slight numbness in the fingers of my left hand. It's on the same side of my surgery. I was wondering if this is a common side effect of anastrozole. I'm not sure if it's the drug, herniated discs in my neck or just still problems related to the surgery. I messaged my Dr and she said might it be carpal tunnel. I know it's not carpal tunnel but they told me to go off the drug for a few weeks and see if it goes away. I'm a little nervous to do that thanks in advance for any insight.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Going off Arimidex for a couple of weeks won't hurt. I'm stage IV and went off it for a couple of weeks during radiation as my symptoms were so bad and they wanted to ease my discomfort. When I went back on it, the side effects were easier to deal with.

  • jnu3
    jnu3 Member Posts: 56
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    I haven't been on for a while. I had my right knee replacement surgery June 21, 2016. Less damage than the left knee which was done May 2012. I am having far better results with flex and bend; but this is taking longer than May 2012. I was thinking well I'm four years older but I am continuing to have what appears to be bone pain which does not seem to want to go away. I started thinking that may be Anastrozole may be the culprit. Anastrozole and/or Arimidex can affect the bones so maybe this is the reason that I am having delay in healing. I see my ortho on Thursday but have an email into my MO who I do see for 6 months follow-up November. Any thoughts would be appreciated. Thanks.

  • Kaneli
    Kaneli Member Posts: 65
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    I just wanted to add a little something here: I was on Anastrozole for about 6 weeks. It made me very moody and foggy headed. Lots of hot flashes and I also was pretty achy. I took about 18 days off from it, and started Letrosole. I have been taking it for about 6 weeks now, and so far so good! I am noticing some hair loss, but that's about it. I am keeping my fingers crossed that the SEs will continue to be minimal!

  • ChesterandRally
    ChesterandRally Member Posts: 7
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    I was wondering if you had chemo or radiation? I had neither and was thinking some of the SE came from that. Is letrosole a new drug? My doctor has told me nothing about anything other than Anastrozole. I am glad you are doing better.

  • ChesterandRally
    ChesterandRally Member Posts: 7
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    I have some questions about SE of Anastrozole. I have been on it for 2 months now. First month-no SE. 2nd month, joint aches, some tingling in hands and feet, dry skin, nails and hair. I had no chemo or radiation. I have been trying to keep moving and that seems to help. I guess my question is do these SE get better over time or worse? When I got my bone scan I was told I have osteopenia. What has been your experience with the bone density?


    Thanks for the help.

  • jnu3
    jnu3 Member Posts: 56
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    I started anastrozole March 19, 2016 after completion of radiation. I had no chemo. The only SE that I have had is the ultimate damn everlasting hot flashes that I thought I had outgrown. I am still wondering about possible cause of healing delay even though I have been assured that that shouldn't be a problem. O well, I will let my ortho and my MO discuss and then discuss with me.

  • Kaneli
    Kaneli Member Posts: 65
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    Letrozole is the generic form of Femara, I think. I actually have been having some heartburn. Not sure if it's the Letrozole But I'm going to stop taking it for a few days and see if that makes a difference. I hope it's not the letrozole because I am having no other SEs, so far. We'' see what a few days off of it does. :)

  • jnu3
    jnu3 Member Posts: 56
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    My orthopedist and my MO discussed the possible effect of anastrozole on bones and bone remodeling. Recommendation is to take a two week break. I really would like to see if the delay in healing and the deep bone pain was a se of anastrozole following my total knee replacement.


  • jnu3
    jnu3 Member Posts: 56
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    So I have been off anastrozole for a week and the bone pain in my knee has subsided; so I believe that the anastrozole was causing a delay in bone healing following my knee replacement in June. I will be going back on to anastrozole next week. Back to those from Hell Flashes.

    Mammogram of October 2015 led to the left breast Dx 11/13/15 and ultimate surgery, radiation and hormone therapy. Had my one year dual mammogram yesterday and all looked well. I feel so blessed after this last year.

  • gerrib
    gerrib Member Posts: 60
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    Hello

    I have been on Arimidex since April 2016. Was on Tamoxifen for 4 years, but that failed and I developed 2nd primary, ILC the second time. I am also on Effexor and Prolia. I am really noticing muscle weakness, especially my quads. I am 65 I don't have any aches and pains or other symptoms. Is muscle weakness a SE of Arimidex or is it just age? I have trouble getting out of a chair without using my arms.I am normal weight for age.

  • doxie
    doxie Member Posts: 700
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    Loss of muscle mass, thus obvious weakness, is certainly a part of aging. Even those of us very active see this. I think it takes a great deal of work to counteract this, if it is even possible.

    That said, I suspect the years of estrogen depletion we have had on AIs doesn't help. It may be secondary, but I believe it comes into play. Not sure how - physically? mentally? I've a little over 4.5 years on an AI. Though I could blame this on stress at work and fewer and less intense workouts, I feel like I've particularly lost strength this last year.

    I just turned 60.

  • dtad
    dtad Member Posts: 771
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    gerrib....so sorry you ar going through this. IMO it could definitely be the Arimidex. Anti hormones speed up the aging process due to the lack of estrogen. Good luck to all navigating this disease.

  • Seedsally
    Seedsally Member Posts: 141
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    Gerrib I too am on the generic Arimidex and I feel so tired most of the time. I am 65 and I've felt tired for a few years now. My muscles feel weak too. I think it might be a combination of things but I am determined to keep taking this medicine if I can since I have a 24% chance of a recurrence in the next 5 years.

  • ChesterandRally
    ChesterandRally Member Posts: 7
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    I have been on anastrozole since July. I have had the muscle aches, still do, but I have found that if I keep moving I feel really good, both physically and mentally. I am 60 and have been in menopause for 3 years so I think that helps me because menopause itself brings a lot of aches and pains. The main thing that I have noticed is how much everything dries out. My hair, skin, nails, etc. It's like it happened over night. Because I had a low grade breast cancer and a double mastectomy, I don't talk to my doctor until 6 months from my surgery, which was in July. My main concern about this drug is the long term effects I have read about, both bone health and aging faster. I will talk to my doctor because I am not sure the good out weighs the bad. Don't get cancer, but am a crippled old lady by the time I am 70. I would love to hear from anyone who has had more good than bad and I thought it might help if I told everyone about my "keep moving" outlook. This is such a hard thing for everyone to choose between having cancer again potoentially or having a good qulaity of life. It is a shame that ends up being your choices.

  • turtle42
    turtle42 Member Posts: 31
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    Just took my last Arimidex pill after being on antihormonals for 10 years. I made it!!! I will be having carpal tunnel surgery and joint replacement in my thumb in a couple of months.

    Not sure how long it takes to get out of your system but I'm hoping the hot flashes get better. Ten years of those is enough!

    There is light at the end of the tunnel

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Congrats to you!!! I'm on it to for the rest of my life or until I progress....at least it's easier than an IV chemo. Just more expensive. In the hospital = $0. At home =$$$$$$.