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

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Comments

  • delightfuljade
    delightfuljade Member Posts: 10

    Has anyone had any experience using Eagle Pharmacy to obtain the brand name Arimidex? I am thinking about doing this but am not sure if this is a reliable pharmacy. I’ve read some BBB complaints about some difficulty in reaching customer service.

    I’ve been taking the generic made by Teva or Accord (depending on the whim of the pharmacy!) for the past year and would like to see if the brand name might have fewer side effects for me. I’ve noticed that my joint pain and stiffness seems worse with the Accord

    Thank you!

    Delightful Jade

  • josieo
    josieo Member Posts: 140

    Delightful Jade,

    Although i’ve never used Eagle Pharmacy (yet), I wanted to share my experience and offer a suggestion.

    I started with the Teva version of Anastrozole four years ago and actually had very few side effects. My oncologist told me to stick with it and he actually wrote Teva on my prescription. (He wrote it for one year, to be filled every 90 days). For the first couple of years, I was always given Teva. In year three, all of a sudden I was given another brand, but I handed it back and requested Teva. The pharmacy had to order it, but I did get Teva. At the next refill, I was told that the pharmacy could not order it, and refused to fill it. I called Teva, found out which pharmacies were stocking it, transferred my prescription to one of them, and continued on. If my current pharmacy stops carrying Teva, i’ll transfer it again.

    At one point I did learn that my insurance would cover the brand name Arimadex, but at an ugly price. I remember it to be about 4x the price of the generic. So fortunately I was still able to get Teva and plan to finish out my treatment on Teva.

    I share all this to encourage you to try to get what you are entitled to without a potentialhigh out of pocket. Chain pharmacies are less helpful than independents, but I have found that being polite, but assertive usually works.

    Good luck!

    JosieO



  • delightfuljade
    delightfuljade Member Posts: 10

    JosieO - thank you for the good suggestions! I wouldn’t have thought to call them, but I’ll give Teva a call and see what they say. The hunt is on!

    Still at some point I’d like to try Arimidex. The Eagle pharmacy charges $60 a month and doesn’t accept insurance. I’ve read that some patients have had better luck with the name brand. Worth a try if the pharmacy is reliable.

    Thanks again for the helpful info

    DelightfulJade

  • celiac
    celiac Member Posts: 1,260

    ml1209 - I was diagnosed with fatty liver when I had an ultrasound prior to gallbladder surgery many years ago. Ended 5 years on Anastrozole in April 2022, but my MO always did liver function bloodwork and no liver enzyme issues were noted the entire time. Good luck with your AI journey.


  • Reckless
    Reckless Member Posts: 50

    Delightfuljade - I used Eagle Pharmacies with no issues. I stopped and went back to generic anastrozole by Teva because my side effects on arimidex did not improve compared to generics. And arimidex is $60 compared to $10 I pay for generics.

    JosieO - thank you for the advice to call Teva! I usually fill at Walgreens, but it takes a while to find a store that carries Teva. And today a pharmacist at one of Walgreens stores I had calle told me they no longer have a contract with Teva.



  • celiac
    celiac Member Posts: 1,260

    I was able to use TEVA brand for 4.5 of the 5 years on Anastrozole. For my final 6 mos, TEVA unavailable, so had to switch to Accord and no real difference noted. Good luck finding TEVA!

  • oldladyblue
    oldladyblue Member Posts: 300

    Thanks cardplayer for the advice on Biotene and seeing my dentist. I have the spray Biotene and the dentist got me an oral mouthwash (2 parts that mix together) called OraCare. Using each of them at different times of the day has helped the dry mouth tremendously.

    To those interested earlier, I did start the thread for a "roll call" of people who chose to stop AIs/Tamoxifen early, not start at all, or reduce dosage, etc. It is meant to keep track of the future outcomes for those of us who are not taking the 5 years of meds as prescribed.

  • cindyny
    cindyny Member Posts: 1,108

    I stopped anastrozole at 4 years 9 months, which was within the last month. I explained to MO I was just done with it. Surgery on wrist, shots in hands, just done. And she said to stop and she’d consider me 5 years as I’ve had no breaks. SO RELIEVED. My endocrinologist also took me off of Fosamax generic a week before that. I’m a happy camper all around.

    I wish you all the best in whatever route you choose.

  • Reckless
    Reckless Member Posts: 50

    Update: I called Teva today. Anastrozole is on back order, ETA early to mid January 2023

  • oldladyblue
    oldladyblue Member Posts: 300

    https://community.breastcancer.org/forum/78/topics/883515?page=2

    Here is the "roll call" thread I mentioned for those who stopped or reduced hormonal therapy to join in and report yearly or so how they are doing. It's not meant to be a conversation thread, just a sort of statistical list. I know we all worry about the recurrence/metastatis statistics. Personally, I am haunted by my decision to stop, but side effects were so awful, my family begged me to stop. I am not trying to sway anybody either way, it's all very very personal to decide on our treatment. I think we all worry. I am also in the Million Veterans research program (sharing my medical data), and have a love of statistics.

  • jinnynh
    jinnynh Member Posts: 26

    I finally had surgery for my trigger thumb--which by then was so stiff I could hardly bend it, much less lift anything using that thumb--and carpal tunnel, all in one go. As this was only 4 days ago, I still don't know if the operations will be successful. I am convinced it was a side-effect, at least partially--of Arimidex (anastrozol). I had my yearly mammogram a few weeks ago, and everything's fine. The doctor said that in view of my supposedly low risk, she thinks I made the right decision (to drop the arimidex). Let's hope she is right! I certainly can't be getting operations every few years.

  • racheldog
    racheldog Member Posts: 209

    It seems like everyone who is on an AI develops trigger finger? I am holding off restarting a short trial of Letrozole because of this particular (bad IMO) side effect of AI drugs. I need my hands! Plus having to go through hand surgery just to stay on these drugs is just not something I want to do. This is just my opinion.

    Has anyone had trigger finger resolve after discontinuation of any of the AI drugs or is this a permanent casualty of these anti estrogen drugs?

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337

    I didn't get trigger finger from anastrozole and I took it for 5 years. I had few problems. I did take Fosamax for the 5 years. I can't think of any problem I had. Not everyone has bad side effects from AIs. Good luck.

    HUGS!

  • cardplayer
    cardplayer Member Posts: 2,051

    I got trigger finger. My orthopedic doctor injected it, had me do a could of sessions of occupational therapy and I had a splint that I wore on my finger. I did the exercises and home. It’s gone away. I wear wrist guards at night to keep the carpal tunnel in check. I’ve been on it for almost two years now.

  • kotchaj
    kotchaj Member Posts: 205

    I have not gotten trigger finger from Anastrozole. Knock on wood. I get the various aches and pains that luckily move about. Right now my right ankle is aching when I climb steps. I take my Claritin 24 hour every day and it does seem to help. Some days better than others.

    I also wonder what would be a normal ache from me being 58 years old and just attribute everything to that. It makes me feel better mentally that way, lol. There is something to be said for floating down that river of denial:-)

    I'm on it for life so I just look at that little pill as an anti-cancer vitamin and take it every morning.

  • FNPMom
    FNPMom Member Posts: 43

    Hello All - I have been on anastrozole for 2 going on 3 years (was on Tamoxifen for a year - but had LAVH) - I had 2 episodes of extreme fatigue - the first one, 3 months ago I managed to go to work but it made it to where I reinstated my intermittent FMLA - latest one last week caused symptoms that made me miss work - I couldn't get up - like post chemo almost - just slept for 3 days and I'm such a go go go person - my onc made me stop my anastrozole for 2 weeks the last time and that's the current recommendation - my liver enzymes (AST, ALT and alkaline phos) also went up both times - scared me to where I was CT scanned and nuclear bone scanned - all negative; I have not read the thread yet but has anyone experienced this? were you shifted to letrozole instead? I also developed arthritis to my right knee and left foot, along my sternal border (bilateral) and shoulders =( Thank you for any info - I have access to lexicomp and all my symptoms are listed under adverse events for Anastrozole =(

  • annie60
    annie60 Member Posts: 295

    I had trigger finger on both anastrozole and letrozole. I had to change to letrozole because of dizziness while on anastrozole. I had trigger finger with my thumbs and middle fingers. It resolved without any medical intervention. I have found that most side effects come and go.

  • castigame
    castigame Member Posts: 336

    If I may, just passed 5 yr Arrrrimidex anniversary. joint pain yes. Weekly Dr Teals Epsom salt bath helps. No claritin no pain meds at least not regularly. Walk whenever i can. Try to make 10,000 steps daily but in reality about 7 or 8000steps. No bone strengthening meds. I only take mutivitamin with Arrimidex in the morning and Synthroid at night.

    About 3 months ago, hot flashes started. Considering chemical menopause was full 5 yrs ago, the hot damned flash was literally bleep. Oh well getting old is sucky suck. Yea another hot damned SE was dryness. Can i say the curse word again?

    My onco told me she would be happy if i can do 7yrs. I dont think i can stop taking it because Arrimidex became the safety blanket of sorts. Praying everyday i can continue forever. Maybe I may try 2 week break every six months or so after 7 yrs.

  • castigame
    castigame Member Posts: 336

    If I may, just passed 5 yr Arrrrimidex anniversary. joint pain yes. Weekly Dr Teals Epsom salt bath helps. No claritin no pain meds at least not regularly. Walk whenever i can. Try to make 10,000 steps daily but in reality about 7 or 8000steps. No bone strengthening meds. I only take mutivitamin with Arrimidex in the morning and Synthroid at night.

    About 3 months ago, hot flashes started. Considering chemical menopause was full 5 yrs ago, the hot damned flash was literally bleep. Oh well getting old is sucky suck. Yea another hot damned SE was dryness. Can i say the curse word again?

    My onco told me she would be happy if i can do 7yrs. I dont think i can stop taking it because Arrimidex became the safety blanket of sorts. Praying everyday i can continue forever. Maybe I may try 2 week break every six months or so after 7 yrs.

  • miriandra
    miriandra Member Posts: 1,972

    Good luck, Castigame! I'm glad you've found good coping skills to help you get through the SE's. I hope it doesn't throw any new ones your way. It's so weird how we seem to bounce around as to what is acting up each week.

    My 5-year will hit in two years, and I've been given the ok to stop when it happens. My knee pain is making my regular exercise very challenging. It's a vicious anti-cycle. I'm supposed to exercise to support my joints and bones, but the medicine I take to support my body is limiting my exercise. Is it supposed to help or not?

  • kotchaj
    kotchaj Member Posts: 205

    Hey all, swollen thumb base joint, that connects to the wrist on the right side. My right knee has flared up as well. I'd be doing so well since I started this dang stuff. I take Claritin every day, I've needed Tylenol to deal with this pain. I'm also on Verzenio 150 X 2. I was taking tart cherry and will start again. I just feel like the inflammation has gone bonkers. UGH.

    Any other thoughts??

    I forgot to add, I'm on this for life. Not 5 or 10 years. But, it's better than what could possibly be the alternative, right?

  • ashley2
    ashley2 Member Posts: 24

    hello everybody ! is somebody taking anastrazole for more than 10 years ? thank you !

  • cindyny
    cindyny Member Posts: 1,108

    I took it 4 years and 9 months without takinga break. I’m done.

  • dulcea
    dulcea Member Posts: 88

    ashley2, I know it's not what you asked but my oncologist has told me I am taking this for 10 years. I'm not sure I can make it that long but I sure will try. I am almost two years in with 8 more to go!

    My main problems have been very, very thinning hair and gobs of it fall out every time I wash it. And I mean gobs. I can't believe I am not bald yet, but the scalp is definitely showing more. The joint pain and trigger fingers can take a hike too. Worse cholesterol and blood sugar as well. It won't help my osteopenia either.


    I will assume you are still taking it and trying to decide whether or not to stop. I guess that depends on how you feel taking it and how your other health issues are. What does the MO suggest? I know for me, once those ten years are up, I am throwing a party and throwing it away.

    CINDY NY! Congrats!! I am jealous!

  • miriandra
    miriandra Member Posts: 1,972

    Dulcea, I lost a lot of hair at first too. I noticed an almost immediate improvement when I started using a biotin shampoo. I just use the Renpure Biotin and Collagen shampoo from Target - it's convenient and not too expensive. Others on here like specific brands that make their hair feel better. It's worth trying out to find one you like. Good luck!

  • dulcea
    dulcea Member Posts: 88

    Thank you miriandra! I will try anything at this point (except the onion juice the MO suggested).

  • kotchaj
    kotchaj Member Posts: 205

    Hi Ashley2,

    I've been told I'm to take Anastrazole for the rest of my life. I am also not the norm. What is that anymore, anyway? smile. Most take it for 5 to 10 years.

    I just had bloodwork done this past week and all of my blood tests were in the normal range including cholesterol and glucose. I've been on it over a year now. My hair has thinned and I take 10,000mcg of Biotin a day and am using Nioxin. My hair is starting to come back in again. It did thin out in the past few months.

    Feel free to private message me or ask me anything on here. I think my signature information is finally correct now.

    Amanda



  • lillyishere
    lillyishere Member Posts: 769

    I like my MO attitude on AI. He said, let's go to 5 years, and then we'll make the decision based on the latest research at that time. I know I am a candidate of 7-10 years or longer because of posite nodes but I like the idea of 5 years. Who knows, maybe a blood test can tell if AI would be helpful in long run or not.

  • celiac
    celiac Member Posts: 1,260

    lillyishere - There is a test (Breast Cancer Index, performed on tumor tissue removed during surgery) that your MO can "order" after 5 years on AI to see whether your risk is low enough to not need to continue the AI. My MO did this test after my 5 years and it indicated I was "done" with AIs. He had stated all along that considering my factors, 5 years would likely be it and this test thankfully proved him correct. Your MO sounds like a good one!

    Healing and positive energies to all!

  • lillyishere
    lillyishere Member Posts: 769

    Thank you celiac. I will ask my MO when I meet him in February if there is any tissue left since my cancer was all over but in tinny amounts and I signed up an agreement to be used for research. I go to a major research center and they were very happy to have their hands on ILC type of BC. It wasn't enough to even for an Oncotype test even though it had spread to lymph nodes. Still, let's worry when times comes. I have another 2 years to hit 5yr mark and we know lots of crap may happend until then.