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

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  • mortmain
    mortmain Member Posts: 25

    I have a postscript on Anastrozole, which was the first AI I was prescribed after radiation. I switched to Letrozole a year or so later when joint/muscle pain became too much and had some relief.

    This past year I became aware of having lost most of my sense of smell and taste and in retrospect realize I had marked changes four years ago, and because of the coincidence of taking the medication I began looking into a link. My MO knew of none, but the other day I found this on the drugs.com site:

    Nervous system

    Very common (10% or more): Headache (18%), depression (13%), insomnia (10%)

    Common (1% to 10%): Dizziness, anxiety, paresthesia, hypertonia, cerebrovascular event (cerebrovascular accident, cerebral ischemia, cerebral infarct), somnolence, confusion, nervousness, carpal tunnel syndrome, sensory disturbances (e.g., taste loss and taste perversion)[Ref]

    https://www.drugs.com/sfx/anastrozole-side-effects.html

    What do you think? I feel vindicated, even though I miss these senses sadly.

  • ml1209
    ml1209 Member Posts: 153

    TACO1946 - did you have any issues with the metformin? I am having nausea and diarrhea. They say that my body should adjust. Apparently Armidex can cause you to become insulin resistant, thus the increase in my blood glucose levels.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    Take the metformin with food. If that doesn't help, ask for the extended release. Unfortunately diarrhea is a known se for met.I am diabetic, couldn’t handle the diarrhea when I started it and working then. Was a school bus driver.

  • Taco1946
    Taco1946 Member Posts: 630

    No SE's with metformin that I can determine. I take It right before breakfast and dinner. I think it has helped me keep my weight at pre BC levels in spite of the AI's. See primary today actually.

  • JSilb
    JSilb Member Posts: 2

    I was on Tamoxifen for five years and have been taking Anastrozole for about 6 months. I am having a surgical biopsy done on Thursday for a solid mass in my right breast (I had bilateral breast cancer and a double mastectomy 6 years ago. I also have Li Fraumeni syndrome.) My surgeon had me stop the Anastrozole about 2 weeks ago. I have been having issues with spotting for the past month or so but I am now bleeding as if having a period. My oncologist said it has nothing to do with stopping Anastrozole for the surgery and to see my obgyn as soon as I can. Has anyone else had an issue like this?

  • hikinglady
    hikinglady Member Posts: 625

    JSilb One reason for spotting can be as simple as a cervical polyp. In fact, that happened to me, and it was quite easily diagnosed and dealt with. There can be other causes, and being seen right away by an OBGYN sounds like an excellent plan. I have never heard of an AI causing spotting.

  • cindyny
    cindyny Member Posts: 1,291

    Jslib - I've had a bleeding cervix on and off for months. GYN has done pap & multiple swabs, all normal. I've had cryotherapy, freezing/burning of the cervix, weeks of hell w that.

    Long story short - never said it was from the AI. GYN said vaginal bleeding from AI could occur, but not from cervix. She said my cervix looked angry - who knew.

    See your OB/GYN. Best of luck.

  • bennybear
    bennybear Member Posts: 245

    Interesting! I too have been wondering about this, I have had bleeding since stopping the AIs and am thinking it is change in estrogen from none to some.


    Mortmain, yikes sorry about your sense of smell. I developed osteoporosis and de quervains from these drugs

  • hikinglady
    hikinglady Member Posts: 625

    FWIW: My girlfriend who's an OBGYN says to ALWAYS have any post-menopause bleeding checked out by your OBGYN. It can be something benign, or something worrisome, and either way, it's important to figure out the cause.

  • bennybear
    bennybear Member Posts: 245

    absolutely hiking girl! Most times it is benign, but it can be a sign of cancer.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    SEs and Armidex. Started taking Arimidex (brand name) in Sept and thought that SEs less than generics. Now I'm not sure, as left hand has become more stiff in AM, one trigger finger on left, and in general, hands seem to be more sensitive to cold. In 2016 I started generic Anastrozole and immediately noticed stiffness and trigger fingers in both hands, so quit, and switched to tamoxifen. With a return of BC in 2019, oncologist has me back on Arimidex and Ibrance. Turmeric supplements as well as in meals seem to help with stiffness, but I keep on wanting to try a device that uses IR. Has anyone tried something like this? A waste of money or does it help? https://www.hammacher.com/products/heated-hand-pain-reliever?promo=search https://www.hammacher.com/products/heated-led-wrist-and-forearm-pain-reliever?promo=search

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

    6/18/2019. Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Scans and biopsy July-Oct revealed it was caused by tumor in R-axilla. Now taking Arimidex and Ibrance. CT scheduled 1/27/2020 to monitor tumor and effectiveness of Ibrance.

  • WINELVR75
    WINELVR75 Member Posts: 1

    After a bilateral mastectomy (left) in April 2019, I was put on Letrosole. After about 6 weeks I developed a lot of edema and switched to Arimidex the following July. Side effects increased in nature throughout the following 3 months. I now have horrible muscle and joint pain. My left shoulder feels like it's falling out of the socket and terrible stiffness in my neck, shoulders and knees. About 6 weeks ago, the tingling and numbness in both hands started and just 4 days ago I developed trigger finger in my right thumb. I'm in physical therapy for the shoulder issue and the general body weakness.

    I feel so achy and weak, but I'm so afraid to go off the Arimidex for fear of the cancer returning. My ONC said I have to weigh the benefits of the meds over the the side effects - are they tolerable? He wasn't convinced that the numbness and tingling was due to the meds. I'm trying really hard to tolerate them but it's a challenge. I talked to my PCP and he said it's carpel tunnel and now I'm wearing braces on both hands at night, and as of yesterday, an additional brace on my thumb. The braces seem to help as I'm sleeping a little better.

    Trying to decide if I'm crazy or are these doctors just not listening to me. I had my cancer for over 1 1/2 years before it was diagnosed - telling 3 different doctors about the lump and red puckering under my breast and they said (men) that it looked like irritation from the underwire of my bra. The mamo tech said it looked very suspicious and was shocked that no one was concerned before now - I opened the conversation with her. Unfortunately, the cancer was so low that it never showed up in the mamo film. After the ultrasound and an MRI, I was diagnosed.

    I'm fed up with doctors not listening! So I'm reaching out for your thoughts. I really appreciate reading everyone's stories - It's been a big help knowing I'm not alone!

    Thank you in advance!

  • bennybear
    bennybear Member Posts: 245

    you need to get your oncologist to give you your personal percentage benefit. Each situation is different, but in my case the benefit was only 2%. So the severe side effects of loss of bone in my spine, terrible knee pain and osteoporosis weren’t worth the small benefit and I was taken off the drugs. Ended up with a tendon issue in my thumb De Quervsins tensonyvitis, and needed a brace and finally cortisone to remove.

    So make sure they run the numbers for your situation so you can make an informed choice

  • reckless
    reckless Member Posts: 50

    Does anybody know if DuaneReade in NYC is experiencing shortages with anastrozole by Teva? I was unable to refill the Rx at my regular DuaneReade. They said that it's not available at the warehousing facility they are ordering from and they do not know when it will be available I was able refill at another DuaneReade, but not sure how long their supplies last if the warehouse does not reorder. Thank you!

  • celiac
    celiac Member Posts: 1,260

    Reckless: Not sure about the shortages in NYC, but here in the greater Cincinnati, OH area I have experienced a couple of shortages when obtaining from Walgreens. They always try to find at another store & I take whatever they can find, cross my fingers, & hope for more to come. Only once did I have to switch for 30 days to another mfr. My DD lives in NYC. Whereabouts are you? (if you want to reply offline, please feel free to PM me.)

  • reckless
    reckless Member Posts: 50

    Thank you, Celia, I am in Queens

  • celiac
    celiac Member Posts: 1,260

    Reckless: DD started out living in the Ditmars Astoria area. We always enjoyed a good nosh at the 31st St Bareburger. She loved the neighborhood. DD now lives in Harlem, in an enormous studio. Lots of good restaurants, but not the same vibe as Astoria.

  • LPLlibrarygirl
    LPLlibrarygirl Member Posts: 82

    Hello WineLVR,

    I am sorry to hear about all of your side effects. I started taking letrozole almost a year ago. The first 6 months were not bad but then the SEs kicked in. I read on this website that many women with extreme side effects take a little break to let their body reset. When I emailed my MO in December that is exactly what she advised me to do. I took a month off and just restarted letrozole last week. If the SEs get bad I can try a different AI, but for now I am hoping to make letrozole work. My recurrence prediction score is 19% with tamoxifen. Letrozole will perhaps give me a better outcome than tamoxifen and lifestyle improvements might help as well. I already declined chemo so I am hoping I can tolerate the AIs for another 9 years! Bennybear is right. Ask your MO for your personal statistics. You may want to inquire about taking a break as well. I hope you can find some help.

  • l8blmr
    l8blmr Member Posts: 119

    I'm in Naples, FL. There is a shortage here as well. I tried Walgreen's, CVS and Walmart. I split my last 5 TEVA pills and am alternating 1/2 TEVA pill and 1 Accord pill to get me to my next refill early Feb. It's the best I could do. Best of luck with an early refill of TEVA.

  • cindyny
    cindyny Member Posts: 1,291

    L8Blmr - I gave up on Teva brand probably near a year ago. Someone on here had done research on the various generics and posted a link. Teva and Accord brands were the most similar with buffers.

    Accord is what CareMark sends me after not being able to get Teva. Trust me, I was like a loonatic trying to get Teva. A lot of wasted energy & stress. Best of luck to you.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    This keeps popping up periodically. The reason seems to be is that the Teva branch of AstraZenaca was sold, is no longer made by them. BigPharma, big bucks. The patients are the ones who suffer.

  • missouricatlady
    missouricatlady Member Posts: 894

    Just checking in, it's been a while since I got Teva, but I got it at Walgreens last. Spookiesmom, thanks for that info, it may no longer be available.

    I have been taking name-brand Arimidex through GoodRX at CVS for about $23 a month, but today I went to get my refill and it was $58. I paid today, but that was the last time for me, I can't afford $60 a month, like Eagle charges. I called Walmart and asked for Accord and they told me there is a shortage (great). She went to look, and they have 26 pills, would I like them? Yes please. I understand many people can take the generic and not have any problems, but for me, leg cramps turn out to be nightmares. I had a regimen set up with magnesium, etc. Now I think I will alternate Arimidex with Accord anastrozole and hope by the time I run out, Accord is back around. I did call the company and ask if there was another pharmacy I could go to, and the customer service department is supposed to let me know. I'd like to stay on anastrozole, but if these cramps come back like holy hell, I will have to have a talk with Jesus to see where I go next. Best of luck to everyone, Lisa


    Edited 1/22/20: I opened the sack from the pharmacy and have 3 BOTTLES of Arimidex. Please disregard my price increase and my apologies. I had no idea there was more than one bottle. I am a fool.

  • missouricatlady
    missouricatlady Member Posts: 894

    Teva - I called them. Their phone number is 888-838-2872. The lady told me the drug is on backorder. She suggested I call back Friday or Monday, and she could update me as to the date it would be available. If you are looking for this manufacturer, please just call, they are really nice, and will tell you where to go to get it (I did this last time), if it is available.

    Spookiesmom is right though: https://www.cambridgeindependent.co.uk/business/astrazeneca-sells-commercial-rights-of-two-cancer-medicines-to-juvis-pharmaceuticals-for-181m-9094405/

    27 December 2019

    AstraZeneca has sold the commercial rights to two of its cancer medicines to Juvisé Pharmaceuticals for an upfront payment of $181 million. A further payment of up to $17m is contigent on sales of the medicines - Arimidex (anastrozole) and Casodex (bicalutamide), which are primarily used to treat breast and prostate cancers.

    Juvisé has bought the rights to them for a number of European, African and other countries.

    AstraZeneca had already divested the rights to Arimidex and Casodex in the US in 2017.

    Dave Fredrickson, executive vice president, oncology business unit, said: "Arimidex and Casodex are important established medicines and we are pleased that Juvisé Pharmaceuticals will now take on the work of making sure patients continue to have access to them. Today's agreement is part of a broader strategy of reducing our portfolio of mature medicines to reallocate resources towards developing our pipeline of new medicines."

    Arimidex (anastrozole) is an aromatase inhibitor primarily used to treat postmenopausal women with certain types of breast cancer.

  • reckless
    reckless Member Posts: 50

    Thank you, MissouriCat!

  • missouricatlady
    missouricatlady Member Posts: 894

    Pascal Soriot is the CEO of AstraZeneca (maker of anastrozole). In reading about him: "AstraZeneca CEO Pascal Soriot made headlines when he moaned about the poor pay he took home for 2017, forced to live on about $13 million in total compensation. That made him one of the worst paid — though certainly not the worst — big pharma execs in the world. So he's not likely to be much more excited by the small growth in compensation he had for last year. "The truth is I'm the lowest-paid CEO in the whole industry," he told the Times last fall — words that were widely noted at the time. "You know, it is annoying to some extent. But at the end of the day, it is what it is. I'm not going to complain, but me and Emma (Walmsley, chief executive of Glaxo Smith Kline) are the lowest-paid in Europe and the US." Those words were thrown back at him during the Senate hearings on drug pricing last week. But that's what happens when you get the big money. Or, in this case, not big enough.

    and then there is this article:

    AstraZeneca to Invest $500 Million in France Over 5 Years

    January 19, 2020, 12:08 PM CST

    "The investment enables us to further build scientific collaborations in France, ensure our global manufacturing site in Dunkirk can continue to meet the evolving needs of the business, and accelerate new technologies through a new European Innovation Hub," AstraZeneca Chief Executive Officer Pascal Soriot said in a statement. It includes $230 million through 2025 to help build a stand-alone assembly line and two assembly and packaging lines and modernization of existing equipment, which could create around 100 highly skilled jobs. The Dunkirk site focuses on the development and manufacturing of inhaled products to help treat asthma."

    AstraZeneca also makes: Crestor, Symbicort, Nexium, Pulmicort, Faslodex, Toprol, Seroquel, to name a few.

    I'm sorry, I just get so fed up with the price of drugs!!!!! Thank you for letting me share (and vent), Lisa

  • spookiesmom
    spookiesmom Member Posts: 8,178

    Poor ‘lil punkin. I think I could live nicely on the interest from his measly salary.

  • barbhenz
    barbhenz Member Posts: 2

    Hi everyone! I'm back! And in a much less a foul mood than before. Thank you to all the people that responded. It really does help to not feel "alone" and to talk to people that actually understand what you are going through. I have a new question. So, been on the Arimidex for a bit over a year now. All is pretty well. Hot flashes are minor, mood is significantly improved and was even able to loose a bit of weight. But now my hair is thinning rapidly. My sister, who is my hair stylist even asked what's going on. Has anyone had an luck with an vitamin supplimements other than biotin? Thank you to all

  • ctmbsikia
    ctmbsikia Member Posts: 772

    No luck with any other supplements. I haven't tried biotin, but have a spray with it in there. I recently found Thicker Fuller Hair at CVS or Walgreen's and tried that. I wanna say it helps but is not a total fix. I ran out of it and was using just regular shampoo and conditioner, and my hair was coming out AWFUL!! I bought another Thicker n fuller stuff and at the very least, it feels and looks better, so that's what I'm doing. It's still coming out, but maybe not as bad. Good luck.

  • missouricatlady
    missouricatlady Member Posts: 894

    my hairdresser recommended this shampoo:

    Avalon Organics Biotin B-Complex Thickening Shampoo, 14 oz.

    $6.58 from Amazon

    I use this and it is helpful to me.

  • spookiesmom
    spookiesmom Member Posts: 8,178

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