Delay in side effects of Arimidex?

Delay in side effects of Arimidex?

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  • Dia86
    Dia86 Member Posts: 5
    edited December 2017


    I was diagnosed with early stage ER+ breast cancer in 3/16. Had lumpectomy and radiation. Went on Arimidex to prevent reoccurrence. My side effects were not bad at first. Starting at about a year into this treatment, an occasional insomnia problem I had got worse. I am now struggling with chronic insomnia, daily bouts of fatigue, aching muscles, and temperature sensitivity. This is making it difficult to do normal activities and leads to depression. My blood work has been normal. I have good mammograms. I was wondering if there is a cumulative impact of no estrogen and that’s why I did well at first. Then the side effects began to build. I was wondering if other people have experienced a delay in side effects starting. I am worried that this will be ongoing and I need strategies to cope with this.

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2017

    Welcome to you Dia86,

    We are sorry about your great cancer and the side effects of treatment and we are glad that you reached out here to our members. You may want to check out the Arimidex thread for possible responses to your questions.The Mods

  • BHBC
    BHBC Member Posts: 2
    edited December 2017

    I had 2 early stage cancers, bi-lateral mastectomy and chemo. I have been on Arimidex for about 8 months now. It is definitely a difficult drug to tolerate. I was having major hot flashes, but those seem to have settled down. Now I am trying to deal with chronic shoulder pain, debilitating shoulder pain. I am not sure if its the arimidex or the prolia of which I have had 2 injections. My Doc seems to think its the arimidex. I may have to change drugs. It is an excellent idea to explore ways to cope with the medication. Figure out what helps and do more of that! I wish you well.

  • Dia86
    Dia86 Member Posts: 5
    edited December 2017

    I wish you the best! I also take Prolia and just had my 3rd shot. I also think my problems are more likely caused by Arimidex. My primary care doctor also thought this

  • chronicpain
    chronicpain Member Posts: 385
    edited December 2017

    BHBC: Are youon prolia 60mg every 6 months, or the 120 mg every month? I have a lot of expierence with the former and in the overwhelming majority of people ( over 99%) they do not have major side effects from the drug in a percentage statistically significantly more than with placebo . I plan to start on it myself soon. Musculoskeletal side effects are super rare, whereas with arimidex it is 26-50 percent, so your doc is probably right,

    But you have to watch your teeth with prolia to avoid the very rare osteonecrosis of the jaw, ONJ, as with dental implants, avoid them

  • Dia86
    Dia86 Member Posts: 5
    edited December 2017

    I have the Prolia shot every 6 mos. While I do know someone who had trouble on it, most people seem not to have any. I have a friend doing well on it and my doctor says the vast majority of her patients don’t have any problem side effects.

  • JKL2017
    JKL2017 Member Posts: 437
    edited December 2017

    Dia86, I've been experiencing something similar. Although I've only been taking Anastrozole (generic Arimidex) for 6 months, I have seen an increase in the number of SEs as time progressed. (Isn't temperature sensitivity frustrating?). Most are manageable (regular exercise helps a lot!) but I have recently struggled with severe depression/extreme fatigue that is anything but manageable.

    If you don't mind me taking your initial post in a somewhat different direction, do you think it's possible that your depression is a result of the AI simply doing its job & preventing estrogen production? While you seem to feel that your other SEs are responsible for your depression, I am starting to think that the depression appears independently & then makes my SEs worse (or at least makes me believe that they're worse).

    Last week, depression slammed me for 6 long days. By Day 6 I was considering abandoning the Anastrozole. Luckily, I woke up on Day 7 feeling much better but now I am wondering when the next bout will begin.

    If I'm right about the depression being the result of lack of estrogen, it won't help to change AIs. And I don't want to forego the protection against recurrence that the AI provides. My BS is encouraging me to try Effexor to treat the depression but I worry about SEs it could cause. (BC treatment seems to a perpetual balancing act!)

    I do believe that the continuing suppression of estrogen has a cumulative impact. Combined with our unique brain & body chemistries, it seems logical that the effects could vary between individuals & even change over time. The question is: What can we do to minimize the impact of this in our lives?

    I'm sorry I don't have any answers for you (or for myself). I hope we all find ways to tolerate this harsh - but crucial - drug.

  • Dia86
    Dia86 Member Posts: 5
    edited December 2017

    JKL2017,

    You may be right about the depression. Sometimes it’s hard to know what came first, “the chicken or the egg.” Depression is definitely more of a problem for me as time passes and I also have a lot of anxiety about my health. I’m having trouble enjoying normal activities ad dwell too much on how I feel. Am considering medication for depression.

  • windingshores
    windingshores Member Posts: 704
    edited December 2017

    I definitely have had the same experiences over time. It makes sense that long term suppression of estrogen (and aromatase, actually) would have a cumulative effect.

    At first, there were hot flashes and joint pains. For me, exercise (walking and very frequent tai chi classes) and a good mattress helped with pain issues. By the end of the second year, fatigue and depression were more of a problem, and now at the end of my third year I am realizing insomnia is too. My thyroid is lowish and sometimes my cortisol: I am switching to a PCP who is more interested in teasing these things out.

    Estrogen is important in serotonin production. The nursing director at my 90 year old mother's assisted living said that women over 85 don't make estrogen anymore and many are on SSRI's. AI's put us in that category prematurely.

    I am starting with a more functional medicine doctor (integrative if you will).  At some point one med causes a problem that requires another med, and our medical issues start bumping into each other so to speak. I am hoping a more "holistic" approach might help.

    Doctors don't want to prescribe help with sleep these days. I really think sleep is so important. Would love to hear what others are doing for insomnia, fatigue or depression.

    Tai Chi and art classes help me a lot!!  It is important to get out and do things.  Winter makes it harder here in the Northeast!



  • chronicpain
    chronicpain Member Posts: 385
    edited December 2017

    Windingshor, if your thyroid is truly low, for whatever reason ( Hashimotos, atrophy, radiation, pretty common) it is easily treated with a thyroid supplement. But if your "cortisol is low" it is more complicated and can be, if properly measured ( early AM or with a cortrosyn stimulation test) reflective of other problems, like pituitary dysfunction. Docs cannot just send a blood level any old time like they do for thyroid and tell you your cortisol is low. Most primary docs know squat about proper cortisol assessment, ask for an endocrinology consult. Also, both can be associated with low b12, easy to treat ( if low, can contribute to memory problems, mood issues, balance and neuropathy problems, anemia, etc.)
    AIs lower your estrogen even lower than the post-menopausal and old ladies in the nursing home who have no ovarian function, as they also knock out adrenal estrogen, making you super, super low on estrogen.

    As for sleep, I am now 63, and I have ten years ofchronic pain and autoimmune diseases which require I take prednisone, and strong pain meds, (tramadol and low-dose narcotics) to keep the prednisoje dose down or my osteoporosis would get worse, or I would not be able to get out of bed, much less work, but they make it hard to fall asleep. For years I have been on ambien (zolpidem) 5mg at bedtime which I tolerated reasonably well for sleep, even though it is officially intended only for short term use. I did not tolerate a myriad of other, milder stuff most docs write for. Since my BC diagnosis I am on double the dose due to anxiety.

    I have an old school, creative primary care internist who knows me for two decades, from back when I was a fairly athletic mountain hiker, motorcyclist, traveler, and target shooter, on no meds except hormone replacement posr-menopause, and she has no problem prescribing and trying atypical regimens since I got sick ten years ago, with close monitoring, as she knows I have no interest in getting high and when something works, it works. She is not on any insurance plan so I pay more (she charges for her time in increments so we always cover everything, up to me how long we spend) and worth every penny.

    My new MOC suggested melatonin from Trader Joes, peppermint flavor, for sleep to try and keep the ambien dose down since the BC, and I bought some online, but the label says it is contraindicated in autoimmune disease, asthma, and depression, all of which I have, so I will not be opening that bottle.

    Other ladies, I hope you post your diagnostic stats and age, if you do not mind? Would help us be able to help you better.

  • Dia86
    Dia86 Member Posts: 5
    edited December 2017

    I was diagnosed with BC one week before turning 60 and now am 62. I had estrogen receptors found in almost all cells in my tumor and so there isn’t any doubt about this playing a role. I know I badly need the arimidex. I was healthy up until this happened to me and only took a daily vitamin. Now I sometimes feel as if I’m 90!

    Does the time of day thatyou take an AI play a role in side effects?

  • octogirl
    octogirl Member Posts: 2,804
    edited December 2017

    Dia, I ended up switching to letrozole from Arimidex because of SEs (mostly joint pain and stiffness, also depression); letrozole isn't perfect but I do find it easier to tolerate. That said, with Arimidex, I had insomnia if I took the pill any later than around 11 am, so I got in the habit of taking it first thing in the am, right after my first cup of coffee. I kept that habit when I switched to letrozole and haven't experienced any insomnia from it at all.

  • NanaJan
    NanaJan Member Posts: 5
    edited February 2018

    I did the same thing. I couldn’t take Arimidex. I took Femara for 4 1/2 yrs and went off. My original plan was five yrs. I took radiation chemo and dbl mastectomy. I feel comfortable with this decision. The SEs had to be considered

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