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

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Comments

  • iamnancy
    iamnancy Member Posts: 641

    MamaOz - it was a surprise to me about the non-alcoholic cirrhosis - and I feel slightly embarrassed because I think people think -oh she must be a heavy drinker... however, people that know me know I seldom drink ----

  • blooming
    blooming Member Posts: 58

    Hi All,

    I hope that the new year has been getting off to a good start. It's been a while since I posted last. I appreciate the feedback. I'm a bit confused about the next step - actually starting the Arimidex.

    I'm scheduled to see the MO tomorrow. The plan is to get a prescription for Arimidex. I've met with a new psychiatrist, had an evaluation of my mood issues, and have a tool for tracking any mood symptoms, sleep, and other factors. I've also been trying to keep track of my pre-existing joint issues. This will help me to discern what might come up as a side effect vs. What I've been dealing with already. DEXA showed osteopenia in spine but radiologist indicated that this might be due to a degenerated disk. (I've had a few severe attacks of sciatica. I also have bone on bone arthritis in one knee.)

    I'm confused about whether to ask the MO to prescribe brand name or generic, and if generic then should I ask for Teva?? Would the MO have a sense of these issues? I figure I should search archives of these forums so I can request something specific but I feel absolutely overwhelmed.

    Do you advise taking the AI in the morning or evening or does it matter?

    I'd like to try some other approaches so I'm registering for a mindfulness meditation program. I'm trying to cut down on carbs and processed foods but that will take me a while!

    I'd also appreciate your wisdom about the strategies that you've found most helpful for dealing with joint issues, hot flashes, and mood.

    what do you wish someone had told you when you were starting AI? Suggestions?? Vitamin D? Benadryl for joint pain? Calcium?

    Thanks for any suggestions.


  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    starting Anastrozole tonight.

    Hoping for the best.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    HapB—. Sorry you had issues with Letrozole.

    I debated about taking at night vs mornings. Since it’s a new med, thought maybe I should take in the morning in case I had a reaction but I think I am going to sign up for a clinical trial where I could be taking a chemo pill each morning so decided to take my AI at night so I can split up the side effects!

  • Marchz
    Marchz Member Posts: 8

    I’ve been on anastrozole for 6 months and haven’t had any problems. I try and exercise daily and do yoga to try and keep moving. I take it at dinner. I’m supposed to be on it for 10 years

  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    HapB- it’s Everolimus (Afinitor). I have been accepted, if I agree, to take part in SWOG-S1207 clinical trial to see if taking Everolimus plus Anastrozole for stage 2 or stage 3 ER+ HER2- patients reducing risk for recurrence or spreading of BC. Blind study, 50/50 chance of getting Everolimus or placebo

  • coachvicky
    coachvicky Member Posts: 984

    Blooming,

    I tried 2 generics before getting the brand name Arimidex. I can tell I take something but it is not that bad.

    I take mine first thing in the morning. I have 4 years, 3 months, and 20 days until I am finished.

    Exercise. Exercise. Exercise. Do something everyday. That is what has helped me.

    I have been on a prescription Vitamin for several years. I think it has helped as well.

    Coach Vicky


  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    HapB- yes, I have been given a list of possible side effects for the clinical trial drug plus the research I have done on my own.

  • blooming
    blooming Member Posts: 58

    Hi

    Thanks, CoachVicky. It feels empowering to hear approaches that are helping. I realize that we are all different in many ways but it helps to know possibilities so we can have constructive options to try, especially if feel side effects.

    Does anyone use charts/tools to track symptoms while taking AI?? I realize some of us start AI with pre-existing issues that match potential SE. Just wondering if there are any existing tools.

    Is there a compilation on bco.org of suggestions from posts in forums? When I started radiation, I was able to find a bco.org guide compiled by another on the board. That made a big difference. If there isn't a guide - anyone "game" to collaborate on compiling something?

    Sending good wishes to all.

  • coachvicky
    coachvicky Member Posts: 984

    Blooming,

    I kept my side effects in an Excel Spreadsheet and enter what happened at the end of each day. The dates were across the top. Listed experienced side effects down the first left hand column. The I used a self-developed scale.

    I gave this to my MO b/c he had to write my mail-order pharmacy to get an "over ride" for the brand name Arimidex.

    Once I got the approval, I called my mail order pharmacy and spoke to a Pharmacist (not the Customer Service Rep). The Pharmacist annotated my records with "allergic to generics." She said this annotation would ensure a second Pharmacist (the ones who checks for allergic reactions) had to apporved my Rx before it was mailed out.

    Sometimes being anal is a benefit.

    Coach Vicky


  • Tappermom383
    Tappermom383 Member Posts: 401

    You’re funny, CoachVicky! I’m three months behind you but I’m taking Accord anastrozole. I’m dealing with the SEs pretty well so far. I agree on the exercise - I used to hate it but I’ve discovered fitness classes I love. Strength training 2x a week, mat Pilates 1x and Zumba 2x. No weight loss but I am so much stronger than I used to be. Our Zumba class is doing a flash mob in our village in a couple of weeks!

    MJ

  • snickersmom
    snickersmom Member Posts: 599

    I usually take the Arimidex in the morning but am going to start taking it at night to see if it helps with the aches and pains.

  • celiac
    celiac Member Posts: 1,260

    blooming - Just saw my MO on 1/12 & BS on 1/17 & discussed Anastrozole side effects with each. MO recommended: Exercise, Advil for joints (will not take this due to stomach issues) & an Acupuncturist who is also a Medical Oncologist Integrative Medicine Dr for joint pain relief (have not yet booked an appointment, and of course, this is not covered by healthcare plan). BS recommended 3 approaches & the one I will try first Acupuncture & increasing Vit D. Prior to AIs, I had very little joint pain - for many years have taken: Carlson's Fish Oil, MSM/Glucosamine/Chondroitin, Calcium w/Vit D. Added Turmeric to the mix with the OK of the MO. Take my pill at night and also take 2 Tylenol PM - seems to help with sleep issues. AIs have made my appetite decrease, rather than increase. I have also changed my eating habits to cut out carbs, eat more fruits/veggies, organic where possible. Hope this helps. PM me anytime, if you want to "discuss" further.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    Tappermom383– my Anastrozole is Accord as well

    One pill down.

    Think I will start a spreadsheet, too, when I start noticing side effects

  • iamnancy
    iamnancy Member Posts: 641

    blooming - please realize for all the women that have side effects, there are some women that have none or have mild SE....and its trial and error when taking this pill... I was taking it at night but then thought it was keeping me awake so I switched to morning and then realized I just wasn't always sleeping well anyway - not SE of pill... I did have some aches and pains (feet and knees) which were bearable... some weight gain Sad and then it made it hard to lose even a pound... and thinning hair... I have been on this pill for almost 5 yrs and will continue it for more years because my dr thinks its worth the prevention. I take the generic brand.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Blooming, Like IAmNancy, I have few SEs from my Teva-made Anastrozole. Thinning hair being the main one and I think I have a genetic disposition to it anyway (Thanks, Gram!). I've been on it for well over 3 years. Sometimes it is very difficult to sort out what is AI caused and what is aging caused or even something else. I've been stiff in the morning for years. I'm still stiff but usually not as bad since I take a regular Claritin daily. Seems to help. Good luck.

    HUGS!

  • Jhnard
    Jhnard Member Posts: 1

    your DX is similar to mine and was just wondering if you are going off the Anastrozole since you have been on AI for 5 years

  • Nancy618
    Nancy618 Member Posts: 318

    Hi ladies, I haven't been here in a long while.

    I am no longer taking Arimidex. After dealing with aches and pains that intensified at night and then a really bad flare up of an inflamed piriformis muscle that required PT for 3 months, my MO suggested changing to Aromasin. Within 2 weeks my pain was gone and I stopped PT. However, now I'm gradually noticing other SEs including fatigue, headaches and I have no idea if it's connected, but cystitis. The cost difference is ridiculous. I was paying $6 for Arimidex and am paying $165 for Aromasin.

    I started yoga recently which has helped my overall well-being, but honestly, I'm tired of feeling like crap most of the time.

    We're going to Florida for a month and I'm praying that walking every day will help. I really haven't exercised other than yoga. I had to quit Zumba because of the painful piriformis muscle. Today I got on the exercise bike.

    I'm about ready to ask to try Letrozole again as I had fewer SEs on that than I have on Arimidex or Aromasin. MO suggested Tamoxifen if I can't tolerate Aromasin, but I don't want to take that because of the incidence of uterine cancer and stroke.

    I guess I should just be thankful that I'm cancer free, but I'm sick of my quality of life taking a dive on these drugs.

  • dtad
    dtad Member Posts: 771

    Nancy...so sorry you are having side effects from the aromatase inhibitors. Cystitis is also a side effect which is caused by the lack of estrogen. Yes QOL matters. We all want to do everything we can to lower our recurrence rates. However for those that experience serious side effects, its a more difficult decision. Hope you find something that works for you. Take care.

  • smwusaf
    smwusaf Member Posts: 79

    Hello all, I've been reading up on this forum. I'm still doing radiation but my MO will start me on meds sometime near the end of Feb so I wanted to be prepared. I'm nervous as I really haven't had to take much medicine in the past and they did my bone density test and I already have osteopenia. My mom and grandmother both ended up with osteoporosis.....

    Nancy618, what a surprise. I grew up in Sussex, WI. small world. :) how long have you lived there?

    Sarah

  • Nancy618
    Nancy618 Member Posts: 318

    Hi Sarah!

    I live just west of Sussex by the ski hill. Been here 29 years. Feel free to private message me so we don't bore everyone else. 😂


  • Nancy618
    Nancy618 Member Posts: 318

    I left a note for my regular physician last night and got a call this morning that I need to be seen. I had a UTI 2 weeks ago. I'm positive that's gone but I have lingering bladder discomfort and feeling like I have to pee often. Of course my doctor was booked so seeing a PA who probably knows diddly squat about AI side effects. I am NOT going on an antibiotic again. Twice I've landed in the hospital because of C. Diff after they insisted my infections weren't gone and needed another round of antibiotics.

    Can you hear my frustration?


  • spookiesmom
    spookiesmom Member Posts: 8,178

    I was on Arimadex for just over 4 years. Towards the end I had recurrent UTIs. A urologist dx’d a different ab and that knocked it out. Then I developed severe bone pain in my foot. To the point of using a walker just to get around.

    I stopped the devil pill, the pain went away. Podiatrist was clueless. MO started me on tamoxifen. Very low dose. 6 months later the other foot was going the same direction. Stopped, waited, restarted, stopped permanently MO officially said yesterday NO MORE MEDS!!

    The devil pill gave me osteoporosis. I’m hoping that will reverse now.

    I’ll deal with cancer, or broken bones if and when it happens. I’m grateful I was able to take them as long as I did but QQL is important too.

  • Nancy618
    Nancy618 Member Posts: 318

    Spookiesmom, thank you for your candid reply.

    Yes, QOL is so important...MAYBE won't get cancer again, but in the meantime, have aches and pains that are real, everything dries up including skin, eyes, mouth and urogenital area, have trouble sleeping...wow, what a trade off. I'm ALMOST to the point of chucking the pills too, and I've only been on them for 8 months..


  • kae_md99
    kae_md99 Member Posts: 394

    starting arimidex today... pray for me pls...

  • Nancy618
    Nancy618 Member Posts: 318

    Kae, you may have NO side effects...it varies so much from person to person. Good luck!

  • kae_md99
    kae_md99 Member Posts: 394

    thanks Nancy. i will update you guys..

  • MamaOz
    MamaOz Member Posts: 239

    Blooming, I started arimidex the real pill , Oct 8.

    Astra zeneka offers it for $1 a pill by mail

    I take itfirst thing in morning, as coavh viky advised exercise and moving is key. I also take vit d3 , an algae based calcium, and multi and fish oil

    I am achy mostly in am when I wake up but fingers crossed so far its doable. I also have osteopenia and am supposed to be taking boniva. But havent yet

    Good luck

    Mamaoz

  • snickersmom
    snickersmom Member Posts: 599

    MamaOz - I'm up near Ocala, about halfway between Orlando and Tampa. Send us some warm weather!!

    I have been on Arimidex (name brand) since June. I was having aches and pains, mostly back and hips, so switched to taking them at night instead of morning. Just did that a couple of days ago so we'll see if that helps. Other than that, I seem to be okay. I was having trouble sleeping but started taking Melatonin 3mg every night and it made a big difference. Many nights I don't wake up at all and if I do, I can go right back to sleep. Before I started taking the Melatonin, I laid awake for hours. The worst thing for me is the weight. I haven't gained but all of my weight seems to have dropped right onto my stomach and hips. But I don't know where it came from!!! So frustrating!!!

  • dtad
    dtad Member Posts: 771

    Nancy...so sorry you are suffering. I cannot remember if I told you about D Mannose. Its a supplement you can take in leu of an antibiotic. It worked for me. Good luck

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