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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • oldladyblue
    oldladyblue Member Posts: 300

    I am 66 years old, and finished chemo in Dec, rads in Jan, had covid in Feb, and started Arimidex in March. Prior to chemo, I was very active, healthy except for GERD, low thyroid and high cholestrol and was on no meds at all. I had no arthritis. The Arimidex made me feel 86 years old, constant bone/joint pain, and in May, after halving the dosing to every other day for 3 weeks with no change to side effects at all. Now, I've been off of the Arimidex for long enough to know that arthritis-like side effects, mental/emotional problems, and terrible insomnia were caused by this drug. While I am not perfectly back to pre-chemo strength and daily living, I feel very good overall and especially for the last two weeks, now that I am not taking the Arimidex. I have a follow up appointment with my Dr. soon, she suggested I switch to Femara if I don't decide to stay off of AIs, and we will talk about it in person. I hate the idea of going back on AIs as my reaction to them was bad, and I may choose to stay off. But for sure, no more Arimidex. KeyWestFan, I am sure you will be able to tell in the 4-6 weeks you are off what is arthritis and what are side effects. Probably sooner.

  • sun-shine
    sun-shine Member Posts: 30

    Hi Oldladyblue,

    I am 59 years old. I finished chemo in February and started taking Tamoxifen in March. My doctor did not give me AIs due to my osteoporosis issue. I've been taking Tamoxifen for about 3 months. My overall feeling is ok in general. Don't have so many side effects expect some vaginal discharge.

    I think you may discuss with your doctor about the Tamoxifen if you want.




  • jrnj
    jrnj Member Posts: 407

    oldladyblue I’m right there with you. I did aromasin than arimidex now letrozole. I’m 56 and feel 86, and my father and his girlfriend feel better than me. Letrozole is only a little better because arimidex attacked my arms. Tamoxifen is an option, I’m just scared because I read it doesn’t work as well for ILC

  • oldladyblue
    oldladyblue Member Posts: 300

    Thank you SUN-SHINE and JRNJ for your posts. I see my MO Monday 9am. Happy to have your information in mind. I will ask about tamoxifen, I have a terrible dread about going back on AIs and I do have fear about not doing taking the best hormone suppression therapy. It is greatly balanced by the knowledge of how less my quality of life was on Anastrozole. I don't know about your type of cancer battle jrnj, so can only offer hugs and hope.

    I am considering an alternative way to manage estrogen. There is a famous alternative cancer clinic near me, LifeWorks Wellness. I used to be a supplement user prior to chemo/rads but stopped as the VA docs recommended no supplements at all during chemo/rads to not interfere with the medical treatments. My MO would hate that I am thinking of going to LifeWorks.

  • nns121317
    nns121317 Member Posts: 102

    I finished chemo in April, finished 25 sessions of rads on 6/15, had my single remaining ovary removed 6/9. I've been taking Arimidex for two weeks, and it's awful. I get no sleep, am nauseous most of the day, have some wild mood swings and constant headaches, can't focus, and hurt all over. It's affecting both my work and personal lives.

    Chemo gave me some lasting unpleasant side effects like anemia (requiring transfusions), cardiotoxicity, and a kidney issue. Rads gave me fatigue and some nasty burns that are finally starting to heal. I got my port out on 6/10, and that's still an open, infected wound that affects how much I can use my dominant arm. I've put on 20 pounds since all this began, and I'm struggling to keep up with my normal diet and exercise routine.

    I'm tired of this quality of life, and I'm debating stopping the AI and waiting 3-6 months before thinking about trying another one. The online tools suggest the 15-year benefit to me of 10 years of AIs is 4-7%. I feel like I need to regroup a little before I can tackle any more side effects. I'm 43, but feel like I'm 83. I intend to discuss this with my MO next week (it's a new doctor for me, my previous MO moved out of state), but anything I should be considering in the meantime?

  • oldladyblue
    oldladyblue Member Posts: 300

    Oh nns121317 I am totally understanding how you've been feeling on the Anastrazole, and I can tell you that I am a totally different person off the AI and with the chemo/rads/covid far enough behind me to feel healed from them. My QOL is almost up to pre-cancer treatments, and I am happy I decided to stop the Anastrazole. My benefit of taking AIs for 5 years is 6%. My benefit of doing chemo was only 2%. So my MO wants me to try Femara, she thinks it odd that I did chemo and won't stay on the AIs which have the biggest reduction benefit. I have that new bottle of AIs on my desk (for days now) but can't bring myself to take it, the Anastrazole side effects were so bad. Also, I keep running the Predict model over and over and telling myself that it shows the chances are greater I will die of something other than cancer in the next 10-15 years than of me getting a cancer again with or without the AIs. Of course, I will probably beat myself up a lot in the future if I do get another cancer but I no longer feel like the crazy, moody, achy, sleepless little old lady I felt like while I was on the AI. I feel good physically and mentally for the first time in a year.

  • beginagain22
    beginagain22 Member Posts: 100

    NNS,

    I am right there with you. The Anastrozole has made my QOL quite crappy. I have been on 3 months and I am tired all the time and sleep is elusive. I stopped for 7 days and my energy came roaring back. I am back on it and feel 98 instead of 48. It sucks and I just want to quit. I didn’t have rads or chemo after my DMX due to low oncotype. I felt like I got a free pass until this nasty, nasty drug

  • oldladyblue
    oldladyblue Member Posts: 300

    BeginAgain22 , I almost don't know what to say, except "hugs". I hope your difficulties lighten up, or perhaps another med will help you feel better.

  • sarahmaude
    sarahmaude Member Posts: 326

    Beginagain22, I’m so sorry to hear that your anastrozole is being nasty to you! Have you asked about other aromatase inhibitors? I know some people respond better to one vs another.

    I stopped my anastrozole for chemo on MO advice. Will restart soon. I’ll ask RO if she prefers me to start before or after radiation.

  • beginagain22
    beginagain22 Member Posts: 100

    Hey there SM,


    I see the oncologist on the 11th. She has to do something different. I just want to feel like myself. I don't need to go 100 mph all the time, but I won't be happy with less than 90....

  • jinnynh
    jinnynh Member Posts: 26

    Hi: I stopped taking Arimidex on April 24, after 11 months (and 2 months on Tamoxifen before then-it caused haemorrhoids and anal fissures). I stopped because I got carpal tunnel syndrome and trigger thumb. I'm supposedly on the wait list for an operation, but the trigger thumb is improving with a cortisone infiltration--and maybe because I stopped the medication. I have also had knee pain supposedly from osteoarthritis, but I don't know if it worsened because of the Arimidex. I got a hyaluronic acid shot in the knee, it seems a bit better. My oncologist finally agreed with my decision to stop, saying my cancer isn't high risk and the side effects are intense (at least, I consider them that way). She said that with my twice-yearly check-ups, I should be OK. I hope she's right. We'll see what she says in October, when I get my next check-up.

  • cardplayer
    cardplayer Member Posts: 2,051

    I started anastrozole 6/1/2021 after trying letrozole for 6 months and experiencing GI and trigger finger issues. I still had trigger finger and did several sessions of OT, which helped. I found wearing wrist guards and finger splint (that OT gave me) helped with trigger finger and carpal tunnel pain. I have some preexisting arthritis conditions, so I'm not sure when I have aches if it's caused by anastrozole or my arthritis. I've had PT and injections as needed in the last 18 months.Warmer weather seems to help, as does staying active. At this point, I'm going to stay on anastrozole and continue my wack-a-mole approach to the side effects.

  • ladyc2020
    ladyc2020 Member Posts: 87

    reading above comments and Im struggling with anastrozole after being on Letrozole for 13 months then taking a 3 week break. Initially seemed like anastrozole was ok. However am realizing that all month I have hardly been able to function. I can do 1 thing a day. Go for a walk/grocery shop/try work for a few hours/. And then I’m a listless tired zombie. This isn’t me. I’m a go getter. Active. Do lots of things. Yet getting up for a glass of water seems too much. The sheer exhaustion is ridiculous. Feels like I’m in a haze every day. Taking me probably 10x as long to get things done. Ugh.

  • cardplayer
    cardplayer Member Posts: 2,051

    ladyc2020 - I had a conversation with my PCP about fatigue and being able to only do one of two things. I use to be able to clean my entire house in one day. Now I’m lucky if I can clean one or two bathrooms. She suggested that it might be from recovering from surgeries (exchange, hip replacement) and to give it more time. I see my MO next month and figure I’ll mention it her. Hope you find answers.

  • ladyc2020
    ladyc2020 Member Posts: 87

    cardplayer - I wish it were something like that, but I had surgery and radiation in 2020. I’m sorry you are deali with fatigue too!

  • threetree
    threetree Member Posts: 1,157

    LadyC2020 - I have the exact same problems that you have with the Anastrozole with my Letrozole. It is the estrogen deprivation/depletion that these AI's cause that are at the heart of the problem. I don't know what the answer is except to quit them altogether. I don't know why they don't look in another direction to find a way that works/helps (like an actual cure instead of all these band aid approaches?). I've been doing the Letrozole for 2.5 years now and I absolutely hate it, but I don't see where switching would produce better results; maybe different aches and pains, but no better. I keep trudging on with this, but just don't know how long I can do it before I just quit and say I'll take whatever comes without the AI.

    I'm really sorry you are having all these problems, but trust me, you are not alone!

  • miriandra
    miriandra Member Posts: 1,972

    I have recently developed deQuervain's tenosynovitis (inflammation of the tendon sheath near the thumb) in my right wrist. Fortunately, it's very treatable. But it's hard to know if it's from the anastrozole, my job, or just from being over 50. Maybe it's to balance out the trigger finger in my left hand. :p

  • cindyny
    cindyny Member Posts: 1,108

    miriandra - same thing for me! Two years ago I had it operated on. I can’t wait to stop this drug

  • joules44
    joules44 Member Posts: 52

    Wow, I feel like I'm in good company here! I have been on Arimidex for the past 2 years and Tamoxifen for 2 years before that. The Arimidex is kicking my butt and I, too, have just developed trigger thumb. That, along with pain in my feet, loss of energy, and loss of my spark. I want to stay on AIs for at least 7 years but I can't imagine what shape my body will be in in 3 more years. I am meeting with my nurse practitioner on Monday and I plan on asking to switch to Aromasin. I have read in the forums that some women have less SEs, or at least less joint pain. I am so tired of feeling so old at 55. I really appreciate what you all have shared since it mirrors my own experience and validates my thought that the AI is causing all of these problems.

  • arabiansrock
    arabiansrock Member Posts: 40

    Ladyc2020 - I feel EXACTLY like you. I told my hubby I can load the dishwasher then I have to sit and rest for half an hour. Then I can load the washing machine, then rest again. If I go ride my horse, I am in bed for the rest of the day.

    I started on letrozole. Made it 4.5 months, half of that on every other day because I could not do every day. I had to get off it, the emotional side effects were so bad that if they had forced me to stay on it, someone would have died. And I am not joking. took 4 weeks off and started anastrazole. brain fog, no sleep (literally sometimes I went 48 hours without sleep), exhaustion, etc. Told my dr I was going on every other day. The good news is that the emotional side effects on this are so much more bearable. But the exhaustion and memory/cognition issues, oh my! So to survive anastrazole I now take a sleeping pill every night so I can sleep, an adhd med every morning to try and wake up, trulicity to fight the weight gain, propanolol to fight the shakes/tremors I now have, and vitamin B complex and methy folate to help with energy. And even with all that, I still can barely do anything. If I overdo in one day because I actually feel good, the next day I usually am laying down all day. This is NOT life. When I complained about the cognitive issues my MO said "its only 4 more years". I asked him if his boss would be ok with him making tons of mistakes for the next 4 years. I'm an engineer, if I make a mistake it could be bad.

    For the fuzzy faced ladies (me included) DermaFlash is your best friend. It is an ultrasonic blade to scrape off the peach fuzz and exfoliate your skin. It works. Its expensive but man does my face feel better after using it. Once a week should keep the peach fuzz at bay.

    ONLY good side effect I've had is I don't need to shave my pits or legs anymore. So theres something.

    If men had to take a drug that removes all testosterone from their body, I think they would expedite research into other drugs. But for women, no estrogen? No big deal, live with it.. Grrr.

  • nhcat
    nhcat Member Posts: 4

    I will be starting on anastrozole and am very worried about the side effects. Does everyone experience the side effects, or does it vary? I'm not someone who takes drugs well and this is worrying me more than the chemo did. Chemo left me with neuropathy in my hands and feet. Makes me wonder if I should just take my chances.

  • cardplayer
    cardplayer Member Posts: 2,051

    Good Morning nhcat - everyone responds differently to medications. I also ended up with neuropathy in my hands and feet from chemo. I started with letrozole in December 2020 and switched to anastrozole in June 2021. I got trigger finger from letrozole and had an injection, did some OT, which helped. I have found keeping active helps keep the joint pain manageable for me. Tylenol helps too.


  • oldladyblue
    oldladyblue Member Posts: 300

    Each woman must make her own choice about the hormone therapy. I think everyone prescribed them, and thinking about them should at least try them to see what side effects happen. It's a roll of the dice. I tried Anastrozole and it destroyed my daily living with bad effects on emotions, sleep, pain, energy, and just plain dull thinking. My husband begged me to come off of them. However, my friend is doing Anastrozole just fine! She had slight side effects and after a 3 week break has no side effects anymore after restarting it. Her cancer was almost the same as mine, we treated at almost the same time except she had 3 positive lymph nodes (she was oncotype 34 and I was oncotype 28). I personally chose to come off the AIs. I have lived most of my life drug free and can't reconcile taking a medicine that affects me so badly. I have a 12% risk of return cancer without AIs, a 6% chance with AIs. I hope the odds are in my favor, but realize that it's a gamble. I am 65, soon to be 66.

  • quietgirl
    quietgirl Member Posts: 165

    Nhcat— I am one of those for whom the side effects were minimal (head aches the first week and that's it so far). I have no illusions that somewhere down the road I might not end up with other issues. My MO had a rather longest conversation about about quality of life and balance (I say longest because she doodled a little picture of a scale with risk on one side and quality of life on the others. It was on the back of some paper which I don't even think she gave me). I also believe that people should give it a try but also aware that doesn't mean they have to commit forever to doing so.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337

    NHCat, I took anastrozole for 5 years and had no side effects. I was quite willing to stay on it longer but my MO felt that 5 years was enough for me. There are many women who do not have problems with this drug. And many who do. I recommend that you start it with an open mind. Do not assume you will have problems. If you do then take steps to mitigate them. One thing I recommend is to take regular Claritin to help with minor joint stiffness.

    I started anastrozole at 69 and stopped at 74. I had no hot flashes. I didn't have any when I went through menopause either. BTW, I did not have chemo. That may make a difference. I don't know.

    Good luck!!

    HUGS!

  • defyfightwin
    defyfightwin Member Posts: 2

    Nhcat~ Since the day I was diagnosed in 2013 I have done what the doctors told me. I was Triple+. I had chemo, radiation and was on tamoxifen for 5 years and have been on Anastrozole/Arimidex for 4 years. First year on Anastrozole I had trigger finger and elbow pain. I was told to check the manufacturer and find a pharmacy who dispenses drug made by different manufactured that did the trick...until they then switched back to previous manufacturer. I have continued to take it and no issues until recently and I have what I believe is arthritis in my foot, but I take an ibuprofen and I push through. I exercise and walk daily. It has wiped me of my life as a female many ways, but cancer took my Mom and my sister and I refuse to let it take me down so I do what is right for me, what's a little pain.

    I was diagnosed at 49 and today I am living the life I I was born to live @ 58.

  • CarolaGX
    CarolaGX Member Posts: 5

    I am finding this thread very helpful. I started taking Anastrozole at the beginning of June and have been suffering from joint stiffness and aches, especially in the knees. About a week ago I started having stomach pains, loss of appetite, trouble sleeping and headaches. The latter symptoms could be due to something else and not SE of the medication, but they are very unusual symptoms for me. I would be interested to know if people have experience getting these kinds of SEs and then having them go away over time. I had planned to start yoga, swimming, etc. to deal with the joint stiffness, but since the stomach pain started I don't feel like doing any of that. I can't imagine continuing the medication for 5 years if these side effects continue. I had surgery in December, no chemo and was feeling pretty good and enjoying life until I started taking the Anastrozole.

  • threetree
    threetree Member Posts: 1,157

    Carolagx - I take Letrozole, not Anastrozole, but they are both AI's and my understanding is that the side effects are very similar. Yes, I too have had stomach pains, loss of appetite, and headaches. Sleeping isn't too bad for me. The stomach pains and loss of appetite happened a few months after I started to take the AI. I saw a couple of doctors who all said it sounded like a stomach acid problem and they all suggested pepcid, omeprazole, etc. That stuff made me feel worse (not stomach wise so much, but "all over yuck" and out of it) so I went to the ER. The doctor there was real concerned that I could have an ulcer, after hearing of my symptoms, attempts at treatment, etc. He called the hospital's GI department and I wound up getting an upper GI that showed that there was absolutely nothing wrong with my stomach!

    These symptoms, along with all the others like the muscle and joint aches and pains all come and go at various times and sometimes they are worse than others. I did settle on DGL for some possible heartburn problems (caused by the AI), but that's all I've done. I just put up with all the other problems (a seemingly endless list), and have for about 2.5 years now. I keep at it, but just don't know that I will make the standard 5 years, much less the 7 or 10 that they are now pushing.

    I'm real sorry to hear of your problems. Others may have other and/or better advice. I find my oncologist no real help. With her it's just "take the drug as prescribed or try another AI", along with all sorts of dismissals and denials that my problems are from the AI (they are!). Good luck, and I hope you feel better soon.

  • CarolaGX
    CarolaGX Member Posts: 5

    Threetree, Thanks so much for your response; it's helpful. I actually suffered from acid reflux already and take medication for it, but the reflux symptoms are very different from the ones I am feeling now. Good for you for lasting 2.5 years on the medication so far - I don't think I'll have the endurance unless these side effects let up. Your oncologist's advice sounds the same as mine. I hate it when they try to deny that the medication has caused the symptoms. The side effects that we are discussing are right there on the list of common side effects of these medications, so why do the doctors try to deny that our symptoms are a result of taking the medication?

    Thanks again for your response and the good wishes, and I wish you luck and hope you feel better as well.

  • oldladyblue
    oldladyblue Member Posts: 300

    Threetree and Carolagx, my oncologist told me straight out at my last visit that "All of the medicines have side effects (the AI's or Tamoxifen) and you just have to try them and switch them and see what works best for you." She is not the easiest person to talk to but she doesn't pooh-pooh the side effects I had, not at all. She just expected me to "suffer through them". As she knows I just can't do the AIs, she isn't even pushing me to stay on the meds. If you can't talk easily to your doc perhaps you should find another. I had a second opinion before chemo that changed my treatment plan, and I was happy I did it. You can always ask for a 2nd opinion. Any doctor should honor that request without any upset.