For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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HausFrau--have you tried either of the other AIs?
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HausFrau, I would suggest that consider changing manufacturers. Many women have been helped by changing manufacturers...it seems that the problem can be with the filler. Hope this helps.
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Haus Frau
That’s totally nuts ; common side effect brain fog and anxiety on Arimidex, yes!
I canned my last MO because this ridiculous attitude, all she wanted to hear was I had hot flashes and joint pain, anything else I would hear “huh that’s strange” 🤬
I have dizziness with the med... she would just say “huh that’s odd... for a year I struggled with the dizziness .. until I fired Ms. “huh that’s strange” .
Went to hematologist because my MO kept consistently ignoring my low WBC and neutrophil count with no explanation, well explanation was from former MO was “sometimes I see that”. Really? Then called in the psych department on me as I began to shed a tear. Dismissed me like I was a mental patient!!
Well wouldn’t you know my hematologist that happens to also be an oncologist drew extensive bloodwork to make sure nothing was going on that I should be worried about; lymphoma or leukemia. On follow up visit he said “ there’s no reason for you to be seeing both of us for your oncology follow-up. I said I never want to see that other oncologist again... and he said” I can be your oncologist “ Score!
He was worried about my dizziness and had me take a mini vacation from Arimidex; dizziness did not totally disappear so he sent me for scans. Damn that was scary, but necessary And negative!
If someone is not listening to you and it’s not setting well with you, move on! So many tremendous Doctors out there; don’t settle for anything less!
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Hi,
I have been on Anastrozole for almost 3 years now. I take a cocktail of supplements to keep the pain away and it has worked so well that I finally am down to taking the supplements only 3 days a week. My big problem is I am TIRED! I work 5 hours a day, I am 69 but that should not make a difference on my energy. I am fine when I wake up but after working 5 hours working with children and shelving books I am so tired when I get home I sleep 1 to 1.5 hours and still go to sleep at 10:30. Will this get better or get worse?
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Have you seen your PCP lately? Maybe something else is going on. Good on you for still working! I couldn’t do it at 69, and certainly not now😍 at 70.
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I will be 73 next week and certainly couldn't keep up your schedule, Denvmom. I agree that a check-up wouldn't hurt but I have had to admit that I too feel more fatigued than I did at diagnosis. On the other hand, that has helped me rethink my priorities and how to use my time. Could you work a little less time or do some task switching with someone?
I know it sometimes sounds counter-intutive but I fatigue less when I get some exercise. Could you find a friend or neighbor who would do a before dinner walk after your nap? Find an early evening low impact exercise class? Senior centers often have low cost exercise programs but they are usually during the day. I admit I that I have to work at doing either of those and DH is out right now alone with our dog who loves it when I come too so I appreciate it's hard to get moving.
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I was just at my WO and she said it was pretty normal to be tired but I was wondering if I was alone...guess not. I love working lost my DH 10 years ago and working keeps me going especially the little children...love them. Thank you for your response to my question.
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Taco 1946. thank you for your response, love your suggestions. I am going to start walking with my dog as soon as it stops snowing and raining. I don't walk in the winter too cold for me and in snow slip and fall is not my idea of fun. I get so much exercise at work I am up and down on the floor shelving books it is better than a work out and I do that about 1 hour a day. I would not do anything different in my job I love it like I said in my other post. But again thank you it is good to know I am not alone.
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Denvmom, like Taco walking has really helped me. When it started to get hot I broke down and got a treadmill in March and have used it every day (usually several times a day) since.
Good luck!
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Started anastrozole this week.
Taking in morning (8 a.m.) -- by 12 noon -- irritable & dizzy w/ changes of head position (e.g. bending down to get produce from refrigerator). Needless to say, this impaired functioning for the afternoon.
Next day, I skipped taking pill (as a way to ease into habit) however, felt nauseous @ 8 a.m. & couldn't eat breakfast until 2 p.m.
Today, I'll take pill again w/ breakfast -- has anyone else experienced this type of dizziness w/ anastrozole?
Any tips/remedies?
With Love & gratitude,
Roseanne7
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Hi Rosanne7 -- try taking it before bed. Try to add bunch of supplements, especially magnesium, melatonin and vit D going along with it.
I take my anti-cancer supplements in the morning, but take those with anastrozole at night before sleep, plus niacin and turmeric. I take 2 vit D x 5000 twice = 20000/day, in a morning and at night. Our vit D level suppose to be > 50 with cancer, and it also helps SE from AI.
Another great thing is vit C IV infusions to bring your C levels to 350, which helps both, starving the cancer cells and alleviating the SE of any treatment. Boost of energy, clears brain fog.
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Rosanne7 For me, all the weird sensations of every time gradually went away over the first weeks, until after a few months I can barely notice any of them. My MO predicted that this would be the case, and it's been true for me. Joints, dizziness, sleepiness....everything just improved until those weird sensations were all gone after awhile. My Mo said "see how you are after 3 months," and I was better in all ways at that point. I share this to give you hope!
Drink lots of water! That always helps our body manage and absorb everything, of course. I have always taken my Anastrozole right after breakfast, so my stomach is coated, and with plenty of fluid. One more thought: quite a few times on these postings, I've noticed that women report a weird thing which later turns out to be caused by some other thing, not this medication. Other weird things can crop up, coincidentally, so don't rule out that slight possibility.
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Rosanne, I was getting terrible bouts of dizziness - to the point where I had to hold onto something. But, as HikingLady said, this SE passed. I only occasionally get dizzy now.
Has anyone had diarrhea with anastrozole? Mine began in mid-February - not frequency but consistency (sorry for the nasty image!). My PCP has referred me to a gastroenterologist - couldn’t get an appointment until mid-June. I don’t know what’s causing it - no change in my diet or meds.
BTW - I switched to taking my anastrozole in the morning and I am sleeping better that when I took it at night.
M
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Tappermom383 YES to diarrhea, for awhile, and sporadically. I started taking an expensive (in Whole Foods refrigerator case, many millions of live cultures, etc.) probiotic daily, and system got back to normal. It happens again if I eat a sweet dessert, or chocolate dessert, or if I drink 2 alcoholic drinks in one evening. I hardly ever do any of those three things, but I've noticed a connection....
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Hi Tapper,
I could have written your post. I had major diarrhea on Arimidex and switched to letrozole. More of same. Maybe worse. Now on vacation from all meds and supplements and upcoming appt with GI this Tuesday. Hmmmm been off meds about 3 weeks and pooping like a champ (sorry friends) MO says it's not a common side effect of the AI but I'm pretty sure it is for me. I normally have IBS but this was different. No warning or cramping just a sudden urge and watery yuck. I'll let you know what the GI doc says. Hope he doesn't want to poke around back there
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Yes to diarrhea, too. Not terrible, but present. But. Since cleansing is a part of my naturopatic protocol ) it does me only good, so I'm not objecting. It's crucial to have clean colons, w/o accumulated toxins, so I actually can stop taking expensive Dr Tobin laxative and skip hydrocleansing all by simply taking Anastrozole )
Dizziness, yes, could happen at any time when doing exercise walking and then stop, now know to stop near a poll or something to hold onto )
Muscles and joints... Maybe. I have mild sciatica, so it's hard to say, whether tights are puling cause of stretching payback, or cause of anastrazole. All tolerable. Three weeks now.
-- on Anastrozole for 3 months as neoajuvant before lumpectomy, left ++/- 1.5cm core tumor with 8.6cm (inconclusive) elongation.
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Hello ed111, HikingLady & tappermom,
Thanks for the good advice!
Yesterday, while out walking/shopping w/ friend -- was literally holding onto poles & signposts to steady myself. Improvised by leaning on shopping cart handle...used it as a "walker".
Due to benefit of info/ experiences you all have shared -- I was able to explain to my friend -- that S/E are normal & "to be expected" when starting this med. Yesterday afternoon (post-walking & shopping exertion) I fell asleep @ 4 pm & woke at 6 pm! And so it goes...
Roseanne7
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I have a follow-up question: Can - do - side effects show up long after starting on anastrozole? I started in July 2017, nearly two years ago. Does it make sense that the diarrhea would show up now as an SE?
Thanks.
MJ
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My MO made sure to tell me that some side effects to AI's DO show up later, after years, yes, that this could happen.
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One more suggestion for those who are working, and whose days may be spent in the office -- do not sit! These days almost all workplaces accommodate or supposed to accommodate healthier life choices, and those include standing desks. If your company does not provide standing desk, buy a desktop extension on amazon. Get yourself a balancing board, so when you work standing, you also stand on a board and gently stretch and exercise all your muscles, especially those that might feel 'pulling' with AI effects. The more you move, the less stiffness and pains from AI are felt. I'm not sitting throughout a day at all. Got myself a standing desk for home, too, so whatever I do, from works to bills to social media to reading, I'm rocking on the board at the standing desk. Practically eliminated sitting ). Noted that when I just have to sit, in restaurant, for example, or in a car, after about an hour, I'm stiff. After a day on a board standing -- no stiffness, no pains.
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Hi, guys, I don't comment often on this thread for some reason, but just wanted to share something with you. I started taking Anastrozole in December of last year and was constantly troubled by side effects like hot flushes (up to 10 times a day), joint pain and vaginal dryness. The pill was manufactured by Accord. Then I spoke to my pharmacist and begged her to order Teva for me because I read that it produces fewer side effects. There were problems getting it, but she persevered and I got my first Teva bottle about a month and a half ago.
Well, I have to say that I didn't expect that much of a difference! Now I am down to about one hot flash a day, usually in the evening and my joint pain is gone! Not sure about vaginal dryness, because I still use coconut oil moisturizer just in case, but maybe will give it a rest one of these days.
My pharmacist said that if she gets prescription, she can get Teva for anyone who needs it. It's a private pharmacy, so I am guaranteed personal attention. She also made me great scar creams for my mastectomy scars. Here's the pharmacy info, if anybody is interested. It's licensed day in many states.
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InnaB, I had the same experience. I switched from Accord brand anastrozole to TEVA brand; the joint/muscle pain is almost non-existent. Someone suggested it on this thread 6-8 months ago. It took me 4 months to find a pharmacy that carried TEVA brand. So happy for the suggestion and making the switch.
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Thanks Ladies, it's hard to believe that the med can differ that much. When I went to my 6 month post surgery appt. in April I asked my MO to made a referral for me to an Integrative Dr. I saw her last week, first she recommended me to do the elimination diet to see if any of the foods could be contributing to my joint pain, I have osteoarthritis and rheumatoid arthritis, I know some of the pain is from that. Then she recommended curumin for pain
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Stellawt57 -- I take 2x2 per day turmeric, and 20000 D, along with keeping my C blood levels at > 300. Plus large supplement cocktail of other goodies. Integrative medicine is the way to go these days...
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And now for the rest of the story (Paul Harvey- for those who are of my generation) part of what I typed yesterday didn't post! I take 2 cumin 2x daily, D- been taking this for many years, Natural Calm a magnesium powder for stress/anxiety/mood swings/anger (my #1 SE), liquid bioactive B12 which I place under my tongue for 20 sec. before swallowing. B12 also assists with the emotional concerns. My regiment also includes calcium, fish oil, and melatonin. When my school year ends this week I will also have acupuncture sessions to see if that will help with the joint pain as well as the anxiety/mood swings. Thanks goodness for insurance! My liquid B12, cumin, melatonin, and Natural Calm are from pharmaceutical quality as OTC aren't always what the label claim. I ordered from Progessive laboratories,
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That's interesting about different generics: I'm currently taking Teva (but Walgreens had just a few pills -- so June refill is Accord. There are expected S/E w/ Teva.... but joint pain is not intolerable -- there is just more pain -- in more joints throughout the body. I'm walking w/ a cane & knee brace for now... hope it gets better. No muscle pain, thankfully!
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Hello all ~ thanks for being here. I started on Anastrozole in November of 2018. I'm taking all my supplements, exercising and moving every day. The past couple of weeks, I have been experiencing a very painful cramp in my left calf area, to the point I cannot put any pressure on it. It does dissipate and eventually go away after lasting many hours. Anyone else experience this? The joint pain is manageable so far, although I hope it gets better. I'm feeling sorry for myself today. HAHA Any advice, guidance is appreciated. Thanks so much.
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fancynancy1, Don't have answers but I have been on Anastrozole for almost a month. feel a little squeeze once in awhile. but so far so good. still dealing with some pain from mx.
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fancynancy - have you had your potassium levels checked? I was having cramps in my calves and feet, turns out my potassium level down from a diuretic I take for blood pressure. My primary doc prescribed potassium for me
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Hi. I can't read all the posts so, if my question is duplicated, sorry. I'm curious about the brand difference Accord vs TEVA. Would it be easy for hospital pharmacy to switch the brand if I request? Since they both are generic, I guess there would be not much cost difference?
BTW, does anybody switch to Femara due to Arimidex severe side effects? I guess this question has already been asked somewhere else. I will try to find...
Thanks. Take care everyone!
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