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

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Comments

  • CarolaGX
    CarolaGX Member Posts: 5

    oldladyblue, thanks for sharing your experience with side effects and advice about dealing with doctors. I haven't discussed these latest side effects with my oncologist yet - I'm waiting to see if they last. The symptoms have seemed to diminish in the past couple of days so my fingers are crossed!

  • oldladyblue
    oldladyblue Member Posts: 300

    I am glad Carolagx that your side effects are diminishing! I kept a log sort of like a journal through every treatment, so I could remember what to talk to the doctors about when I saw them. I think you should think about that too, as time makes everything blurry in my mind, but the notes don't go away. Then you can use the notes to discuss with your doc.

  • threetree
    threetree Member Posts: 1,157

    OldLadyBlue - Thanks for your comments. I agree that if you can't talk to the doctor, it's good to think about another one. With the oncologist though, I only see her lately every 6 mos for what are hopefully "just routine" check ups, so I've gone ahead and stayed with her (switching has it's own problems, especially if you want to stay with the same clinic). She actually is a normally pleasant person and I think she means well and wants to do good, but she is not very "innovative" and won't deviate one iota from "standard of care".

    Interesting though, I had my "Medicare annual wellness visit" with my regular dr via zoom yesterday and I told him about the ongoing Letrozole side effects and now the added lingering "post covid" side effects that I have that are very much like those of the AI's (fatigue, muscle aches, brain fog, etc.). He acknowledged all of them, but said "unfortunately there is no magic bullet" answer for these problems. He suggested that you can really only just live with the side effects or quit altogether. At first I was a little disappointed that he didn't really offer any solution, and even thought he might be skating a bit, but then I realized I was glad to hear from a doctor who was honest and blunt about the whole thing. He didn't dismiss me, he didn't claim the side effects were from anything else, and he didn't then try to refer me to some sort of specialist for further investigation, as so many other drs do. He simply said some form of, "Yeah, I hear you and there's really nothing you can do about it." End of story. I would rather hear them say there is no solution and that they don't have "the" answer than get all this runaround, dismissal, and pawning both your symptoms and you off on other causes and doctors (I think doing that helps their own egos). After mulling my visit with the doctor yesterday over a bit, I came to the conclusion that it had been refreshing, and that I will just deal with things as best I can.

    At this point, I haven't felt that my AI side effects are so bad that trying a switch might help, given the likely side effects I would encounter with a switch. Trying a switch can come with it's own problems too, so for now I'll just keep chugging along as is.

  • CarolaGX
    CarolaGX Member Posts: 5

    threetree - I definitely hear you on that. I've had that happen with other (non-cancer) doctors/ health issues - denial that whatever they've prescribed is causing problems and/or referral to more specialists for more tests that come up with nothing, when the last thing you want at this point is additional doctor's appointments. I too would rather get a straight answer than an endless runaround.

    And oldladyblue - thanks again, the health journal is an excellent idea; I have been trying to keep one and am resolving to be more faithful about keeping track of the symptoms.

  • oldladyblue
    oldladyblue Member Posts: 300

    I too like straight talk from doctors, and doctors who aren't in a "rush" as it makes me feel odd to have them rush through my appt like why see me if you don't have time to do it properly....


  • jrnj
    jrnj Member Posts: 407

    carolagx, yes aches and pains all over and severe insomnia and headaches, mild gastritis and loose bowels and night sweats. I’ve tried them all. No relief. 2 years now. Also experimenting with new cholesterol medication. I haven’t slept in 2 weeks, going crazy. Omeprazole works pretty good for me, one of the only meds I can tolerate.

  • jinnynh
    jinnynh Member Posts: 26

    Hi all of you with hand issues from Arimidex. The cortisone shot in my thumb wore off, now instead of "triggering", I think it's probably what another of you report: deQuervain's tenosynovitis- The joint is inflamed, and I cannot bend the thumb much or pick up anything heavy or open twist-off tops. As it's now 3 months since I stopped Arimidex, I doubt it will go away on its own, though I do exercises and wear a splint at night for the carpal tunnel. Seems like I will eventually get operated on, if they ever get around the waiting lists. I'm putting cannabinoid cream on it, which is supposedly anti-inflammatory. Also on my knee (the hyaluronic acid shot did nothing for that). I'm also sleeping a bit better. I never had your troubles with energy. Sorry about that. I fear that as long as Big Pharma earns money from this junk, they're not very interested in developing a new drug. Same goes for the crap they peddle for osteoporosis. To anyone with osteoporosis or osteopenia, I recommend the website saveourbones.com. They have a full program: diet, exercises, lots of research. The only thing they sell is their program (which you download and can buy piecemeal); they don't sell any supplements or anything like that.

  • CarolaGX
    CarolaGX Member Posts: 5

    jrnj, thanks for sharing your experience. Sounds like we share a lot of symptoms. I hope your insomnia improves; I know how maddening that can be. Good for you for hanging in there with the meds for 2 years despite all the symptoms!


  • jrnj
    jrnj Member Posts: 407

    carolagx, I’ve taken several breaks from meds using surgery as an excuse. I had ovaries out, diep, phase 2 reconstruction. And I switched meds 3 times. Sad when you are looking forward to surgery to feel better. I also was taking them every other day for quite a while but am now taking them almost every day. I’m on letrozole now. Every day I think how will I live like this. Going off cholesterol meds helps, but I need to do something about that. Now I’m approaching diabetes and osteoporosis. Let’s add 2 more meds. Ugg!

  • RoRo123
    RoRo123 Member Posts: 9

    I started Letrozole about 3 months ago. I'm noticing my thumbs are "clicking" every once in a while. Previous to this side effect, I have floaters, one in each eye. My retina specialist claims the AI has nothing to do with this, though I find it coincidental on the timing. I'm not sure I want to continue using this AI. I've already tried Exemestane and Tamoxifen, which made me very dizzy.

    My onc even said that DCIS isn't something to be worried about and that taking the AIs is just preventative. I don't know what to do.

  • quietgirl
    quietgirl Member Posts: 165

    Roro123

    It is preventive but in the end there is no guarantee. No guarantee that is you take it cancer won’t return, no guarantee that is you don’t take it that cancer will return. It’s more likely statistical if you take it cancer won’t return. Doctors throw all sorts of Percentages around that are based on studies that follow people who have had cancer. So here’s the first fact the majority of people who have dcis and a lumpectomy don’t have a reoccurring in 10 years, add radiation to that and the number with a reoccurrence goes down even more BUT it’s never zero right. You add in AI and the percentage who do is even lower. Let’s say 10 percent (it varies by so many factors so your Dr probably gave you an idea). So if you are 80% unlikely to have a reoccurrence without and AI and 90% unlikely with an AI it truly becomes what is the trade off for you

    We talk about quality of like but so many things factor in and they are also so personal. A woman in her 40’s might make a different decision that someone in their 60’s or 80’s.

    The other thing to remember that anything that is effected by a decrease in estrogen in your body can be indirectly cause by an AI. So yes floaters can be of course that doesn’t an increase in floaters doesn’t happen as we age anyway so no one can prove it but here is an article that discuss the subject. https://www.aao.org/assets/6ae9b4fb-1626-47aa-bf64-f1e6fb7f0b0d/635570315144270000/march-2013-clinical-update-comprehensive-pdf

    Whatever you decide to do remember there isn’t only one choice and you have to make the best decision for you. I know for some it’s just words but I think there is a difference between quitting and making an informed decision and stopping (not suggesting that you should stop just saying we don’t get to decide if we have cancer but we do have the power to decide how we treat it, whether it’s the type of surgery or the type of medicine or having radiation

    Wishing you peace in whatever you decide.

  • oldladyblue
    oldladyblue Member Posts: 300

    roro123 I feel you! I wrestled with side effects versus benefit for weeks.

    My Onc told me that ALL of the estrogen suppressors have side effects. She just suggested I try to find the type of AI or Tamox that I am able to tolerate. I stopped taking Anastrozole and never started another. She understands, but I went against her recommendation due to the severity of my side effects.

    Taking AIs IS totally a preventative treatment. As I understand it, the AI reduces Estrogen in your body to "starve" any hungry Estrogen-eating cancer cells still left after breast cancer surgery / chemo / rads. Or to starve a new breast cancer if it starts.


  • miriandra
    miriandra Member Posts: 1,972

    Here's one. The other day, I could hardly go two hours without having to pee. I even woke up multiple times in the night because I had to go. And it wasn't a tiny dribble like you'll sometimes get during a UTI. It was a full bladder emptying, pale yellow, dilute. So I looked up what frequent urination could indicate. One of the potential causes is calcium in the blood stream causing the kidneys to not reabsorb as much water as they're supposed to. Is this the calcium that is supposed to be in my bones that anastrozole is known to leech out? Is this leeched calcium now causing kidney disfunction?

    I looked up ana side effects, and increased urination is listed among the incidental SEs. I'll have to ask my doc about it at my appointment in a few weeks. :/

  • cardplayer
    cardplayer Member Posts: 2,051

    miriandra - I had frequent urination at night after starting AI drugs. I got tested for UTI twice and finally went to my GYN. She said vaginal dryness can cause frequent urination. That’s when I started using a vaginal lubricant every other day. Hope you find the cause and solution.

  • quietgirl
    quietgirl Member Posts: 165

    AI can also effect glucose levels/a1c (which is a test that estimates what your sugar levels are over a 3 month time period. I only mention this because frequently urination is a side effect of rising glucose levels for prediabetes and diabetes. Your body’s way of trying to rid itself of excess sugar. Not saying it’s the only reason for increased urinination just it’s a possible reason as well so especially people who are already prediabetes might benefit from some blood work to make sure it’s still in chec

  • beachnc
    beachnc Member Posts: 5

    Hello all. I started Arimidex (after rad) November 2021; I have Rheumatoid Arthritis and it's been a bear. Almost immediately the 'normal' RA joint issues were 5x worse and I felt like I hit a "fatigue wall" early afternoon every day. A few months later came eye issues, trigger finger (that I'd never even heard of) and bizarrely persistent severe tendinitis in one arm. Tried exemestane briefly (sharp increase in BP) - and my MD thinks switching to another AI will not help.

    I've taken 5mg prednisone once a week just to get a break. In June, I stopped the AI for some travel and was almost immediately better. Went back on it and I swear it's worse than ever. In my recent MD visit, we agreed that I'd stop at the end of 2022 - given the characteristics of my tumor and the s__storm the AI has been.

    I'm hopeful that all these symptoms resolve shortly after I stop taking it, but I've been told it may be months. Anyone have any experience? (my bone density is still good; knock on wood). thank you!!


  • momwriter
    momwriter Member Posts: 276

    I took Tamoxifen for 8 years and have been on an AI for 6 months. (i did take a 6 month break between them). At first I felt a lot of fatigue from the AI. But I think it went away. As far as other effects, It's hard at my age (57) to know what is normal creakiness and what is because of the AI. But for the most part I try to do regular exercise, I try to run or hike regularly, and I find if I do that aerobic weight bearing activity along with yoga twice a week I feel really good. I tolerated tamoxifen pretty well for all those years but at the end there I started feeling some tingling in my hands and feet and asked to take a break. The break was longer than I intended because I was terrified of taking the AI, but it has been fine so far thank goodness.

  • cardplayer
    cardplayer Member Posts: 2,051

    Hi momwriter - I’ve been on AI for 21 months now. I walk daily which helps. Do you use light weights when you exercise? Maybe light weights would help my shoulders and wrists.

  • momwriter
    momwriter Member Posts: 276

    Hi -

    I don’t use weights ever but I do yoga which is weight bearing on the joints and maybe that helps. Also when I get my heart rate and real

    Cardio is helpful I think and always makes me feel good.Also I haven’t been on the AI that long. I also try to take the tonic fire cider regularly which is mostly apple cider vinegar plus ginger garlic etc and I feel that helps as an an anti inflammatory. If I were really good I would avoid sugar and alcohol altogether and just go on an anti inflammatory diet. I try to limit gluten as it bothers my skin. It probably would be worth doing a 3 week cleanse annually.

    We all have to make it work how we can. And if it is horrible for the quality of life then you have to make hard choices.



  • miriandra
    miriandra Member Posts: 1,972

    WOO HOO!! I just got confirmation from my onc that I'll only need to be on AIs for 5 years. That's two more years to go and I'm done. I haven't had nearly the complications and side-effects that some others have had, but I will still be grateful to not have to endure sore knees and elbows.

  • cindyny
    cindyny Member Posts: 1,108

    Miriandra congrats to you!
    I’ve got 4 months left to hit 5 years. But when I see my MO in early November I am asking if I can give myself a Christmas gift and go off, stop, the AI. I’ve had enough, and I’m hoping my body has enough residual of this drug to keep me safe.

  • jkl2017
    jkl2017 Member Posts: 279

    Congratulations, Miriandra. First your union and now this!

  • infoiskey
    infoiskey Member Posts: 5

    I take Anastrozole also. May you share with you which brand multivitamin you are taking?

    Thanks


    XT

  • miriandra
    miriandra Member Posts: 1,972

    I just take Whole Food's in-house brand, Women's 1-a-day.

    Outside of that I also take Glucosamine/Chondroitin and Omega-3 in the morning with my multi. In the evening, I take Calcium and Magnesium for my osteopenia, Iron for borderline anemia, and a B-Complex for nerve pain.

    SickTired

  • ladygwendolyn
    ladygwendolyn Member Posts: 5

    Dear @pontiacpeggy and @homemom, thank you for your kind suggestions …and sorry it’s taken me a year to reply!!! I’m back here for more understanding re: how people are coping on Arimidex. I’m 13 mos into it… and just lately the SE have ramped up.., trigger fingers on both hands, fatigue, brain fog, diarrhoea .. sheesh! I’m also back trying to lose weight using NOOM but getting nothing but frustrated… at least I can say I’ve only put on about 3kgs… not happy but it could be worse. Im still cranking on all the exercise … it’s a distraction, if nothing more. Siting down/sleeping leaves me stiffer than cement. Hopefully I won’t need to move quickly in the night!! It just won’t happen 🙄

  • oldladyblue
    oldladyblue Member Posts: 300

    Miriandra, thanks for your vitamin list. I was thinking of getting a daily "vitamin pack" set up for myself again, besides my multi-vite. What you described taking and why fits me almost to a T, so I am going to add just what you take to my routine. Question: I still seem to have horrible dry mouth lasting far beyond my treatments. Any suggestions? My doctor just says "drink more liquids". Nice to see you back Ladygwendolyn, but sorry for the ramp up in your side effects. I used Anastrozole for only a short time as I had bad effects sort of like yours almost right away.

  • jkl2017
    jkl2017 Member Posts: 279

    ladygwendolyn, I had a lot of SEs on Anastrozole and was pretty miserable. My MO eventually suggested a month’s vacation from the drug even though she didn’t think I’d see any improvement while off the AI. When almost all my SEs disappeared within the first week or so, she switched me to Exemestane. I still experience some SEs, but it is definitely easier on my body than Anastrozole. You might consider trying another AI; you can always return to Anastrozole at a later date.

  • cardplayer
    cardplayer Member Posts: 2,051

    oldladyblue- I have awful dry mouth. I’ve been using biotene lozenges, sugar free caramels and drink water throughout the day. My rheumatologist wanted to put me on Pilocarpine, but I didn’t like the side effects. Maybe a visit to a dentist or rheumatologist is the next step for your dry mouth?

  • ML1209
    ML1209 Member Posts: 153

    Anyone having issues with a fatty liver while on anastrozole? I just hit my 5 year mark, but testing shows I would benefit from staying on it. The side effects aren't terrible (bone pain, dry mouth - dry everything!, makes me feel like I'm 100 years old), but I found out I had a fatty liver at time of my breast cancer diagnosis. My liver enzymes have been elevated this entire time. I was on tamoxifan for a short time, but liver enzymes went even higher and so they switched me to anastrozole. I have pain (achey, burning, like a pulled muscle) under my right rib cage - I have had this since diagnoses. Had a liver ultrasound when I started chemo and nothing other than a fatty liver and then I just had one recently because dr said it sounded like gall bladder. Ultrasound was normal - still have fatty liver. MY GI seems to think that the chemo and meds just do a number on my liver since its already struggling. So, do I continue the AI or not? Nobody seems to have any good answers.

    Thanks you in advance for any insight or thoughts.

  • cindyny
    cindyny Member Posts: 1,108

    ml1209 - you’re young so you have a lot to consider. It’s all a very individual experience and you have to do what’s best for you. I don’t know enough about a fatty liver to give any advise on continuing the AI or stopping. But I do wish you the best in whatever you decide