Arimidex side effects

Karenkrad
Karenkrad Member Posts: 8
edited March 2014 in Breast Cancer #1
Hi All,
I am facing extreme fatigue and chronic pain. Which is effecting my quality of life. I feel as if I am in no mans land. My GP wants to put me on anti depressants, but I am not depressed, just very low because of the side effects of the arimidex. It is so bad I am forced to take time off work, which I feel will cost me my job?
There is a lack of understanding I feel with the medical teams after main treatment has ended. Women are put on drugs like arimidex and are forced to carry on without any proper meaningful support. This is a very grey area and an issue that needs to be raised to give people more support to aide a better quality of life?
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Comments

  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Karen, I am so sorry to read
    Karen, I am so sorry to read this. Have you contacted your onc and discussed your current state? I would think that if the side effects are unbearable that consideration would be given to change the pill. This therapy is very important to our well being but not to the point that it effects our lifestyle of being unable to work, etc. Please discuss with your onc and I hope you can get some relief. I'm sending strength your way to get through this and on to a more normal living!! Good luck!
  • pattimc
    pattimc Member Posts: 431
    Side effects
    I, too, am suffering from the side effects of Arimidex. I have made an appointment to see my onco tomorrow. I've been on it for 6 weeks and have experienced major headaches, aches and pains, fatigue, etc. She told me that when I went on it that if the side effects were unmanageable we could try other drugs or put me back on Tamoxifen which I handled fairly well. Please call your onco and make an appointment. I'm sure they would want to know that you are not doing well.

    Best,

    Patti
  • mwallace1325
    mwallace1325 Member Posts: 806
    Was on femera
    I can totally identify with you. I was on femera for seven months and it was worse than chemo and rads. I stopped taking it for two months on my own (not necessarily something I'd recommend for anyone else). I needed to know for sure if what I was feeling was caused by this drug and if I'd feel better being off it. I felt much better and when I went for my next visit with my onc I handed her a list of side effects and made notations about which were worse and how bad each was. She looked over the paper and changed my meds immediately. All she asked was if she could keep the paper I'd given her.

    I think the oncs are afraid to tell us about the side effects because they're afraid we may "get" them if we know about them.

    If you go in and calmly explain (or write down) everything going on with you, hopefully you'll get the attention to this that you need.

    You're right about quality of life. My family doctor asked me if I'd rather have cancer than hot flashes when I told him what I'd done and I tried to explain that if it were only hot flashes I'd have no problem with that. It was everything else that made me feel like I was 106 years old and about to fall over.

    Try talking with your doc again, or one of the nurses on your team. Ofter they're more sympathetic and understanding.

    Good luck.

    marge
  • Mama G
    Mama G Member Posts: 762

    Was on femera
    I can totally identify with you. I was on femera for seven months and it was worse than chemo and rads. I stopped taking it for two months on my own (not necessarily something I'd recommend for anyone else). I needed to know for sure if what I was feeling was caused by this drug and if I'd feel better being off it. I felt much better and when I went for my next visit with my onc I handed her a list of side effects and made notations about which were worse and how bad each was. She looked over the paper and changed my meds immediately. All she asked was if she could keep the paper I'd given her.

    I think the oncs are afraid to tell us about the side effects because they're afraid we may "get" them if we know about them.

    If you go in and calmly explain (or write down) everything going on with you, hopefully you'll get the attention to this that you need.

    You're right about quality of life. My family doctor asked me if I'd rather have cancer than hot flashes when I told him what I'd done and I tried to explain that if it were only hot flashes I'd have no problem with that. It was everything else that made me feel like I was 106 years old and about to fall over.

    Try talking with your doc again, or one of the nurses on your team. Ofter they're more sympathetic and understanding.

    Good luck.

    marge

    What Marge says is true....
    you really need to go off of it to see if that's what's causing the side effects. I was blaming my numbness on the arimidex and it turned out to be a tumor in my brain. After being off the arimidex for 4 weeks I really can't blame it for any of the side effects I thought were because of the drug. Ask your doctor if it's ok to go off of it for a while and see if you feel better. Good luck.
  • KayNYC
    KayNYC Member Posts: 495 Member
    arimidex side effects
    I have also been plagued by the side effects and I am involved in an investigation of quality of life on Arimidex at my cancer treatment center. The study is being funded by the Komen foundation. The docs appear very aware of the problem of keeping women on these drugs that cause such negative impact on the quality of life. I have been started on high doses of Glucosamine and Chondritin (this can raise the glucose levels), another clinical trial to address the ankle pain and joint stiffness. Now I have been diagnosed with high cholesterol. I am working with my internist on this new problem since I do not want to take the Statins due to side effects that appear so much like those that are associated with the Arimidex (several people in my family have tried statins with adverse reactions). I have been told the only way to know if the cholesterol is directly related to the ARimidex is to stop it for a while. I have decided not to do this since I believe the benefits outweight the risks, at least in my case.Seems we have to weigh the risks and benefits of everything we do...
    Hugs,K
  • jphilpo
    jphilpo Member Posts: 177
    side effects
    I can so relate to you. I was so depressed after being put on femara. I never have suffered from depression before. I had terrible bone and joint pain and could barely walk. I called my dr. sobbing and he immediately took me off the drug for 3 weeks. When I saw him again, we talked about it and I am now on tamoxifen. It is better, but not great. I agree with your comment about "if we know about it, we might "get" it." After treatment, most women are told NOTHING about what might happen. I just thought I would take a little pill and be fine. It changed my life, even more than chemo,surgery and rads. My patient co ordinator at the hospital also told me that they are now taking more seriously the side effects that women are suffering. I told her being ignored or being made to feel "less than" a trooper is so demeaning. She totally agreed. More support after treatment would be great.
    Thanks for the post,
    Jean
  • natly15
    natly15 Member Posts: 1,941
    I had to go off arimidex
    I had to go off arimidex because it was putting me into a terrible depression and I was already taking an antidepressant. I'm on femara now, and testing the waters. So far I'm ok. we'll see what happens. I do believe in a quality of life and I knew arimidex would not give that to me and I went off it before even advising my onc. we all are so different and have to make the choices which are best for each of us.
  • lizzie17
    lizzie17 Member Posts: 548
    2 years
    I have been taking arimidex for 2 years now and most side effects have subsided. The only one that has lingered is constant fatigue. And wow, that really does interfere with the quality of life. I have discussed this with both my surgeon and my oncologist, and they both say----If you are tired, sleep, your body is telling you it needs rest to heal and stay healthy. I already take an antidepressant that my oncol gave me a year ago. I feel like arimidex is worth the fatigue, and I still have bone and joint pain on occasion, because IF it will keep me healthy long-term.....I have to keep taking it.
  • Karenkrad
    Karenkrad Member Posts: 8
    Mama G said:

    What Marge says is true....
    you really need to go off of it to see if that's what's causing the side effects. I was blaming my numbness on the arimidex and it turned out to be a tumor in my brain. After being off the arimidex for 4 weeks I really can't blame it for any of the side effects I thought were because of the drug. Ask your doctor if it's ok to go off of it for a while and see if you feel better. Good luck.

    Arimidex side effects
    Hi Mama G,
    Thanks for the reply!
    Nice guitar by the way
    Well due to a viral infection the last ten days I have not taken the arimidex, and must admit I feel slightly better, pain in joints seem to have improved a little and brain does not seem so clouded. I feel the arimidex makes me feel very low I am not normally so negative. I have lost my get up and go?
    Sorry to hear about the brain tumour. How are you feeling, are you still having treatment?
    Best wishes,
    Karen
  • Karenkrad
    Karenkrad Member Posts: 8
    KayNYC said:

    arimidex side effects
    I have also been plagued by the side effects and I am involved in an investigation of quality of life on Arimidex at my cancer treatment center. The study is being funded by the Komen foundation. The docs appear very aware of the problem of keeping women on these drugs that cause such negative impact on the quality of life. I have been started on high doses of Glucosamine and Chondritin (this can raise the glucose levels), another clinical trial to address the ankle pain and joint stiffness. Now I have been diagnosed with high cholesterol. I am working with my internist on this new problem since I do not want to take the Statins due to side effects that appear so much like those that are associated with the Arimidex (several people in my family have tried statins with adverse reactions). I have been told the only way to know if the cholesterol is directly related to the ARimidex is to stop it for a while. I have decided not to do this since I believe the benefits outweight the risks, at least in my case.Seems we have to weigh the risks and benefits of everything we do...
    Hugs,K

    Arimidex side effects
    Hi Kay,
    Sorry to hear you are also suffering with side effects. I sincerley hope the project you are involved in turns out to be a worthwhile meaningful study? It would be great to have the tools to prepare a good foundation for the medical care teams, I believe there is too little research being carried out at the moment, and alot of the preventative drugs like Arimidex are given without proper knowledge of the long term side effects. Because these are relatiely new drugs it takes many years to gather enough solid data to come to some positive conclutions?
    I must admit I have not had my cholestrol tested since the start of Arimidex. I have had regular dextra bone scans.
    Yes I am worried about the risks if I come off the drug.
    Let me know how your study goes, I would be very intereted to know the outcome?
    Best wishes,
    Karen
  • Karenkrad
    Karenkrad Member Posts: 8
    jphilpo said:

    side effects
    I can so relate to you. I was so depressed after being put on femara. I never have suffered from depression before. I had terrible bone and joint pain and could barely walk. I called my dr. sobbing and he immediately took me off the drug for 3 weeks. When I saw him again, we talked about it and I am now on tamoxifen. It is better, but not great. I agree with your comment about "if we know about it, we might "get" it." After treatment, most women are told NOTHING about what might happen. I just thought I would take a little pill and be fine. It changed my life, even more than chemo,surgery and rads. My patient co ordinator at the hospital also told me that they are now taking more seriously the side effects that women are suffering. I told her being ignored or being made to feel "less than" a trooper is so demeaning. She totally agreed. More support after treatment would be great.
    Thanks for the post,
    Jean

    Arimidex side effects
    Hi Jphilpo,
    Yes same here I thought after my main cancer treatment things would be fine, just popping a pill seemed easy?
    I have also had my ovaries taken away in the last nine months, so no hormones to help me through my every day life?
    I strongly feel you are left to cope on your own once the main cancer treatment has ended.
    The health care teams are now becoming more aware that more people are surviving cancer and living longer. It has been noted there is a gap for the care of the long term cancer survivor, hopefully with enough voices and dedicated research things will start to improve?
    Thanks for the reply let me know how you are getting on?
    Best wishes,
    Karen
  • Karenkrad
    Karenkrad Member Posts: 8
    natly15 said:

    I had to go off arimidex
    I had to go off arimidex because it was putting me into a terrible depression and I was already taking an antidepressant. I'm on femara now, and testing the waters. So far I'm ok. we'll see what happens. I do believe in a quality of life and I knew arimidex would not give that to me and I went off it before even advising my onc. we all are so different and have to make the choices which are best for each of us.

    Arimidex side effects
    Hi Natly,
    Thanks for the reply!
    Let me know how you cope with the Femara I just might consider changing? I will mention this to my Oncologist during my next visit?
    Hope things start to improve for you.
    Best wishes,
    Karen
  • Karenkrad
    Karenkrad Member Posts: 8

    Was on femera
    I can totally identify with you. I was on femera for seven months and it was worse than chemo and rads. I stopped taking it for two months on my own (not necessarily something I'd recommend for anyone else). I needed to know for sure if what I was feeling was caused by this drug and if I'd feel better being off it. I felt much better and when I went for my next visit with my onc I handed her a list of side effects and made notations about which were worse and how bad each was. She looked over the paper and changed my meds immediately. All she asked was if she could keep the paper I'd given her.

    I think the oncs are afraid to tell us about the side effects because they're afraid we may "get" them if we know about them.

    If you go in and calmly explain (or write down) everything going on with you, hopefully you'll get the attention to this that you need.

    You're right about quality of life. My family doctor asked me if I'd rather have cancer than hot flashes when I told him what I'd done and I tried to explain that if it were only hot flashes I'd have no problem with that. It was everything else that made me feel like I was 106 years old and about to fall over.

    Try talking with your doc again, or one of the nurses on your team. Ofter they're more sympathetic and understanding.

    Good luck.

    marge

    Arimidex side effects
    Hi Marge,
    Thanks for the reply!
    Yes during my next vist I am certainly going to talk about the issues that I am faced with at the moment.
    I just think more collabaration is needed between the drug companies and the health care providers to produce worthwhile studies of the long term use and benefits of these drugs. Just think it is a little hit and mis at the moment? The cancer medications are often given to attack the cancer in the best possible way and not much research this I think is the main problem, it takes many years to gather proper relevent information. Drugs like arimidex are fairly new to the breast cancer arena and there is still not enough valid research out there with regard to the long term benefits and survival?
    best wishes,
    Karen
  • Kiantae
    Kiantae Member Posts: 29
    Hoping I won't strike out with Med # 3
    I started out on Femara but found the joint pain intolerable. I was switched to Arimidex and the joint pain has subsided but now my heels hurt so much it is difficult to walk. I have my 1 year checkup in a couple of weeks and I am hoping the next med will be better. I guess if it is not, I will have to choose which set of side effects I can deal with. I have had fatique from both. I think with the surgeries and treatments we know there is an end and mentally get ourselves in a place where we can cope. We can count and say we are 1/2 way done or 3/4 of the way done. There are milestones that we work on reaching. With the follow on meds, there is no tangible end in sight you just have to deal with it for 5 years. This is by far the hardest part for me.
  • gagee
    gagee Member Posts: 332
    having lots of side effects also
    Well I am having a lot of side effects. Had to go to urgent care tonight. My hands and feet are so swollen... can't believe it. I feel like chit all the time, fatigue,swelling,depressed and now they are checking to see if I may have Lupus. What next. . . thought I would have surgery,rads and the arimidex and be back to normal. No normal for me yet. I even had e-coli in my breast wound from a dirty radiation room (or so my doc thinks). Suppose to be over that but still feel yucky and tired. Don't know from what I feel worst. See doctor in the morning to see about the Lupus. Pray it is only the Arimidex side effects.

    Sorry you are having problems and didn't mean to lay any more on you by talking about mine. So thankful I can vent here.

    Wishing you well and lots of Prayers coming your way.

    Happy Holidays,
    Diana
  • New Flower
    New Flower Member Posts: 4,294
    I can relate to your pain
    I have the same opinion about anti-estrogen therapy and support from medical community. I changed my oncologist 8 months ago because I felt lack of compassion, while I was on Tamoxifen.Recently I have been taken off Arimedex for 1 month due to severe side effects of this drug by my oncologist.
    Yes, make a list and discuss openly your problems. Please reach out, you should not suffer.

    I think because we are not complaining and do not ask about quality of life oncologists do not take it seriously. I also believe that pharmaceutical companies underestimate and downplay side effects anti-estrogen medications.
    New Flower
  • warrrior3
    warrrior3 Member Posts: 92
    Starting Arimidex today
    and now petrified! I met with my Onc for the first time yesterday. The only side effects he and his nurse discussed were MINOR stiffness in the fingers that would feel better as the morning went by and maybe hot flashes!! Since I have not experienced hot flashes the last two years since my period ended I assumed I would not have them on meds. I WAS given a sheet with a list of possible side effects but thought it was just from the PDR like all meds have. After reading everyones horror stories regarding Arimidex I have a much better idea what to expect. Thank goodness we have each other to hear the truth.
  • KayNYC
    KayNYC Member Posts: 495 Member
    warrrior3 said:

    Starting Arimidex today
    and now petrified! I met with my Onc for the first time yesterday. The only side effects he and his nurse discussed were MINOR stiffness in the fingers that would feel better as the morning went by and maybe hot flashes!! Since I have not experienced hot flashes the last two years since my period ended I assumed I would not have them on meds. I WAS given a sheet with a list of possible side effects but thought it was just from the PDR like all meds have. After reading everyones horror stories regarding Arimidex I have a much better idea what to expect. Thank goodness we have each other to hear the truth.

    We don't all react the same way to medication
    The list of side effects go on and on however, thankfully, we don't usually get all of them. I do agree however that the side effects are minimized by the Oncologists when they talk to us about taking them for five or more years.
    I am hoping that the Komen study I am involved in, on quality of life while on the hormone receptor blockers will be helpful not only to Pink warriors who come after us but to our medical providers.Support during survivorship needs more attention by the medical community as our numbers grow.
    Hugs,K
  • New Flower
    New Flower Member Posts: 4,294
    KayNYC said:

    We don't all react the same way to medication
    The list of side effects go on and on however, thankfully, we don't usually get all of them. I do agree however that the side effects are minimized by the Oncologists when they talk to us about taking them for five or more years.
    I am hoping that the Komen study I am involved in, on quality of life while on the hormone receptor blockers will be helpful not only to Pink warriors who come after us but to our medical providers.Support during survivorship needs more attention by the medical community as our numbers grow.
    Hugs,K

    Kay what kind of study are you in?
    Kay ,
    can you provide a link to ready about study you are in?
    Thanks
  • Kiantae
    Kiantae Member Posts: 29
    warrrior3 said:

    Starting Arimidex today
    and now petrified! I met with my Onc for the first time yesterday. The only side effects he and his nurse discussed were MINOR stiffness in the fingers that would feel better as the morning went by and maybe hot flashes!! Since I have not experienced hot flashes the last two years since my period ended I assumed I would not have them on meds. I WAS given a sheet with a list of possible side effects but thought it was just from the PDR like all meds have. After reading everyones horror stories regarding Arimidex I have a much better idea what to expect. Thank goodness we have each other to hear the truth.

    Everyone is different
    My good friend that started her breast cancer journey a year before I did has been on Femara and has had no side effects at all. I think the percentages of people that don't have terrible side effects are more than those that do, so the odds are in your favor.