For Arimidex (Anastrozole) users, new, past, and ongoing
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Jinx
I’m really cheering you on that the brand name can help you! I’m personally astonished with the difference I feel on it! I order it through eagle pharmacy at $30 a month. Otherwise with my insurance it was going to cost me $780 for a 3 month supply!!😱
Oh shoot you have neuropathy too? Me too!! That put a double whammy on my body aches. But the most amazing thing is this is finally all improving!
Thank you Eagle Pharmacy and ladies on this board!! Keep us posted Jinx, please!
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Thanks for all the helpful suggestions!
I'm on Vit D 3 and Calcium, but not magnesium. Doctor didn't mention the latter.
I'm not thrilled to hear about the weight gain and possible loss of hair. I'm already several pounds overweight.
Is depression a side effect?!
If need be, I'll look into acupuncture and try some of the other suggestions that have recommended.
I really can't afford the name brand if that's what my oncologist recommends down to road. btw, I'm 74 and that's why I sometimes think I don't want to take hormone therapy. Don't know how many years I have left but I'd prefer quality of life over feeling sick all the time.
As mentioned, I start Anastrozole tomorrow. Btw, is there a best time of day to take it? Thanks again.
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Most insurance companies require the generic brands. I didn’t do well on the accord brand, so requested Teva from Walgreens. I refused to take it home if it wasn’t Teva, and made them order it for me.
Times are individual. If you have other meds, take then so you don’t forget. See how it goes.
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Spookie, I'm with you. If it isn't Teva, I won't take it.
Viewfinder, I'm 73 and have been on anastrole for 4 years. My hair was already thinning and I was a bit creaky in the morning. Nothing has changed. My hair is still thinning. But I take regular generic Claritin and that helps quite a bit with the creakiness. I checked with my PCP because it is useless for my allergies and I wanted to continue taking Benadryl. He said taking both is just fine. And it is for me. Good luck!
HUGS!
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Viewfinder
Magnesium is in my calcium supplement, it’s important for absorption of calcium. FYI
I didnt get depressed on it but I’m sure it’s a possible side effect.
I take mine in morning. When I was taking late afternoon to early evening my insomnia was worse!!
You are going to do fine on it I bet!!
Good luck!
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I'm strictly TEVA brand too. Only because I know what my side effects are with it, which are doable, and don't want to try another.
I take it at 12:30AM. Night owl always, I did notice I'd wake up after 4 hours of sleep & had trouble going back to sleep. After a while that stopped, so I'm still a before bed AI taker. Pick what time works best for you. If you decide its not working, you can always change it. Best of luck!
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I take Anastrozole in the morning with no problem. I started out that way with it last year and it works okay for me.
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Hi ladies! I'm looking for some input from those with experience on Anastrazole (I believe mine is accord)...
I see my MO next month and want to discuss SEs of the Anastrazole as well and options to change to another AI. I've been on since min-February, so 8 months. I had terrible joint pains when first standing in the morning and after sitting for a long time like at a restaurant or in the car. Once I got moving though I was fine. In addition, I would have debilitating fatigue if I tried to work on my feet for 1/2 the day in my job as a caterer. Started acupuncture about a month ago and it really has helped with reducing these 2 SEs immensely.
My other SEs are my breathing.... started about 1.5 mo this ago, out of no where I can have a sense of shortness of breath, or a craving for deep breaths, and many yawns. It's not all the time, but happens at random, and not necessarily when I am exercising or exerting energy. I have always had acute asthma, and I feel like it is as if I'm having asthmatic symptoms. Maybe anxiety induces it. I need to pay closer attention and write it down so I am prepared to explain it to my doc. Similarly, my heart rate has been getting really high (185) with my workout. I called My onco cardiologist and he ran the gamut of tests on me the past couple of weeks including a CT angiogram and all checked out fine 🎉, and I see him next week to go over it all. Maybe it is a pulmonary specialist I need to see.
But I'm really tired of doctors, and wondering what is causing what..... is it the chemo, the rads, the AI, the sudden menopause having ooph, just getting older in general.... Im am otherwise healthy 48-year-old and I'm tired of feeling like I'm 80+....but if it is my new normal, I will work with it..... I just don't want to be thinking each new issue that crops up is cancer and then go through thousands of $$ worth of tests we cannot afford to learn it is just a SE of the Anastrazole. And then learn that if I just switched to another form of Arimidex, or another AI like Aromasin, these symptoms would dissipate. Maybe I need to go off it for a couple weeks and see if the SEs go away-- mainly the breathing and heart rate.
Sorry to vent here ladies, and would love any empathy from anyone that has had breathing/heartrate issues or sharing any thoughts about switching to another AI as well. Thanks bunches in advance! 😁
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Mama Felice-
You are simply stating the facts. I too, had an ooph as you probably have heard me say a million times over on this thread. I was perimenopausal and the COMBO of this PLUS anastrozole were at times unbearable. The ooph I truly believe exasperates the side effects of the anastrozole or maybe 80 percent of the side effects are the drop of estrogen from the ooph! Who knows because 2 weeks after my ooph I was taking a anastrozole, that is an incredible shock to the system!!
I do not have a low pain threshold either. Not in the least! My side effects were headaches, hot flashes nonstop, body and joint aches ( I likened myself to a 90 year old woman) dizziness (where I could not get out of bed some days) insomnia, and severe mood swings. No doubt since I had residual neuropathy from Chemo this worsened the muscle and joint pain. I had a movement Dr that works exclusively with cancer patients confirm this.
And yes acupuncture has been amazing and yoga for me! Game changer was switch to brand name Arimidex!!
I don't have breathing problems. I can't imagine how scary this must be. But the dizziness was something that scared the hell out of me. I changed from TEVA brand anastrozole to brand name Arimidex and I feel 💯better. This could not be a coincidence in my opinion. My side effects were so awful it was my last ditch effort before I switched to another al. I feel like I have my life back!!
Is there a thread for surgical menopausers here? There should be, because for me this has been by far and away the most difficult portion of my treatment! I have complete empathy for you Mam Felice!!🤗
Hang in there and keep us posted!!
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I was already post menopausal when I started Anastrozole, just SE's of hot flashes until about 7 months in, I started having the joint pains, hard to get out of a chair, pain and stiffness after sitting in a car for 30 minutes or so. I too felt like I was 90 years old. My oncologist gave me a one month holiday off the Anastrozole to see if the joint pains went away. After two weeks off the Anastrozole, I felt like my old self, no more joint pains and stiffness. I then started on Letrozole and have been on it for just 5 weeks but so far so good. It seems like this is just a matter of trial and error, what works for some is not so good for others. I am hoping I get at least 7 months on Letrozole and my onco said we could always try the third AI. Good luck to you
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For those having very bad side effects, I'm sorry. I'm taken aback by the severity of some of them. Thank you for sharing your experiences.
I have a very important event that I must attend the end of this month, so I'm calling my oncologist on Monday to see if I can wait a few more weeks before starting Anastrozole. She may tell me I'm worrying too much, but I don't want to take any chances.
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Boy do I appreciate the quick responses from so many of you already! And I appreciate any more that want to chime in!
I am just not a "medicine" person..... always preferred making the healthy life choice to avoid a pill to make it better. In this case, I am soooo thankful to have the AI as part of the ammunition to starve my 99% ER+ Cancer, and not taking it is not a choice for me. I just want to ensure I am being my own advocate in requesting another AI option and not just settling for this is how it has to be....and to me, you all are the gateway to the truths about these meds. Thank you again! 😁
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MamaFelice - keep "shopping" for the right AI. For me letrozole was better than anastrozole. Less joint pain, fewer headaches and some stability from my mood swings. I did take a three week break recently and MO also gave me something (haven't picked it up yet) to see if it would decrease my hot flashes so I'm back to popping the little pill each morning. Hate my thinning hair but it I could get the hot flashes under control, I could wear a wig. I also know that the balding isn't just the chemo and drugs. My stylist reminded me yesterday that my mother was almost bald when she died at 96.
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I believe that post menopausal women may not have the severe side effects on AI’s that chemically induced menopausal women experience.
I am into my fourth month on Anastrazole. SE’s are manageable so far. I would like to feel as good as I felt up to the day before I started on Anastrazole. I was five months post-op from BMX with DIEP Flap Reconstruction. I felt better than I have in the last ten years. I will keep finding solutions to the SE’s. I will switch to another AI if and when the SE’s become too overwhelming.
I have made peace with this little white pill. I am grateful that there is something that will stop feeding any cancer cells that may still be lingering about in my body.
Ladies, those of you who have been forced into menopause my heart goes out to you. Natural menopause is difficult enough much less having to give up every ounce of estrogen all at once.
Good luck to everyone as you work through these AI issues
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CBK, can you tell me more about your dizziness? This is something that bothers me the most, more than joint pains and hot flashes. I also worry that I should insist on more tests, and not just accept it as my new normal.
I'm not on anastrozole, I am on letrozole, but my oncologist says dizziness is AI related. She says I am having a hard time because I was thrust into menopause (I was 40 at DX and very regular before chemo has started).
My dizziness first strated while I was still on Lupron with letrozole, but then it went away for a month. It came back 2 weeks after oophorectomy. It's at its worst before and during a hot flash, but I also have small dizzy spells throughout the day, often when I am more.tired. I think (and really hope) that it's getting better slowly, but I still have it 5 weeks after it first started. It feels like when I don't get as many hot flashes, I am less dizzy. We had a week of cold weather and I felt a lot better, although not 100%. When I compare how I feel now to how I felt 2-3 weeks ago, it's night and day (now being better), but if I compare to 2 months ago, before oophorectomy, I am miserable. My DR says my body will eventually adjust to the absence of estrogen, but it may take another 6 months. I don't think I can't take 6 months of this.
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Received my brand name Arimidex today through the patient direct program! Only paid $30 bucks. I took the first one yesterday, we will see how things go....
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FarAwayToo-
So sorry to hear you are experiencing side effects of the ooph/letorzole.I too feel out of everything joint aches were bad enough, but the dizziness is unbearable!
I think for me I’m easily dehydrated on anastrozole, I’m not a huge water drinker to begin with so this probably does not help my plight!
I don’t recall dizziness being something that happened right away after ooph and anastrozole but came on a couple months afterwards! At least if I did get dizzy early on it was manageable!
So before I switched to brand name Arimidex around 3 weeks ago, I would have days prior to this where I could not get out of bed I was so dizzy! It would be a whole day of me being largely incapacitated at about 3 times a week. Other days I would be just standing there and whoosh the room would spin. I can’t say it was correlated to more hot flashes or not! Hot flashes have subsided substantially for me! Thank God, because post-ooph I was a 24/7 hot flash until I went to acupuncture!!
I am about 9 and a half months post-ooph! It’s a hard battle. I’m encouraged to hear your MO is supportive in acknowledging the combo of the ooph and AL is very difficult! VERY!! My MO found my dizziness puzzling??? Huh, it says it right smack dab on the bottle caution: may cause dizziness! Combine that with the drop of estrogen from my ooph and I’m quite certain that’s what’s the problem😡
When dizziness was very bad I actually would take a small dose of Ativan for relief! I’m sure if you are like me you probably aren’t interested in popping another pill, but sometimes it was what I needed to calm down !!
But things do get better, they do! You are super early out of ooph. Let me know if you have any more questions! I’m always here!!
🤗Karen
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Thanks, CBK! My MO says the same: things will get better. When I saw her in June (I was 2 months in on letrozole and 4 months on Lupron by then), she told me "it will get worse before it will get better". I THOUGHT I had SE then, but now I understand I felt great in comparison to how I feel now. I only had some joint pain, mostly in my wrists and fingers.
She said things tend to be the worst around 12-18 months since chemically or surgically induced menopause. I lost my periods immediately when I started chemo last September, so I'm right around that time. She also gave me 6-9 months as the mark when it gets the worst from the time of starting an AI, so, again, starting letrozole in April, I'm right around the time she describes as the worst. I trust her a lot on this, because she deals with women like myself a lot - she is a BC oncologist who specialized in young women.
But I still wonder sometimes if I should push for more test for my dizziness. Did you have any tests done to diagnose your dizziness and headaches?
If it would be getting worse, I would do so. But I feel like it's getting better, albeit very slowly. Comparing to how I felt yesterday or 2 days ago is not helpful, because I feel the same or sometimes even worse. But looking back 2-3 weeks ago, I think I'm much better, so I just hope the improvement continues. I wish I'd asked her for a brand name prescription when I saw her for 6 months follow up two weeks ago. It is something worth trying, for sure. I know some people stop AIs for several weeks to a month to see if SE would go away, but I feel like I'm high risk and AI is a good weapon against my 80-90% ER+ cancer, so I'd rather deal with SEs.
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FarAwaytoo, maybe your dizziness isn’t a SE. Maybe it’s a coincidence in the timing that it appeared. You might want to see an ENT (ear, nose and throat doctor). They are very good at resolving dizziness issues. More than likely an ENT will want you to have an MRI if your MO hasn’t ordered one. You should not have to suffer like this. Maybe the inner ear crystals have gotten out of wack.
Just a suggestion...sending (((hugs))) for some relief
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Can someone please clarify for me. The very bad symptoms, are they primarily with those who have had chemically or surgically induced menopause?
Forgive my ignorance but I've never heard of chemically induced menopause before, though I understand better now. Thank you.
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Wow FarAwayToo-
Your Dr has given you more concrete information than any of mine have! That is excellent information on timeframes of side-effects from both ooph and AL! Thanks for that. It puts a lot into perspective and gives me so much comfort and peace. 🤗
I did not have additional testing for dizziness, but my MO sent me to a cancer Dr that specialized in problems with ALs, chemo-induced neuropathy and other problems related to movement. That only got me a prescription for Cymbalta (which I did not take) and a long regime of PT. My headaches did not last that long while on anastrozole.
I’m around 15 month mark menopause (thanks for that explanation on figuring that!! 👍) and 8 months on AL. Although I went off for about three weeks and back on! I’m not sure if it’s just timing, (but not according to your MO’s calendar)but I felt almost immediately better on brand name Arimidex . Not sure if I’m still riding some strange kind of beginners luck wave but I’ll take it!
Yes, I’m even higher ER + than you, so I understand how important it is for you to just make this work! Sounds like you are in very good hands keep me posted how it unfolds for you! I’m wishing you the very best on all levels!!
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CBK: So you are not on any other med that could make you dizzy? Other drug attempts to remove the hot flash were far, far worse than the flash itself. I was age 50 with the ooph. It took 6 months for the hot flashes to be less disturbing. Still, you are on the right path. Stick with either Letrozole or Arimedix. Time is your ally. Keep going.
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Hello Mexico Heather!!
Nope, no other drugs although I’m on a lot of supplements. Only new ones added in when I started taking anastrozole were calcium and turmeric, oh and fish oil.
I mentioned too that when dizziness became really unmanageable I occasionally popped an Ativan to calm myself down, but that actually took away the dizziness if anything.
Hot flashes much better! I’m so thankful for that. One thing my MO DIDN’T try to give me a pill for and treated holistically!
I’m determined to keep taking this pill and making it work. What is your experience between Arimidex and Femora? And were you on generic or brand?
Yup happy #50 and here’s your ooph, that was me too🙃 Mexico!!
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Viewfinder--
I've been on Anastrozole (Teva brand) neoadjuvant since June 1, 2018. I felt a bit achy and "flu" like the first couple weeks. But after my body adjusted I have to say outside of hot flashes and dry eyes and some hair thinning, my body adjusted. So while I still have hot flashes and my eyes are much drier--I don't have huge side effects--even my hair loss seems to have slowed down/stabilized to more normal levels. I am taking a host of supplements since my diagnosis---I take melatonin 20 mg and magnesium 400mg at night which helps me sleep. Melatonin is also supposed to help with the breast cancer apoptosis and magnesium helps with bone synthesis. Also, taking Vitamin D, Calcium, Biotin, Turmeric, Omega 3, Indole-3-carbinol (cancer apoptosis) , N-acetyl-L-Cysteine (cancer apoptosis) and vitamin B12. My med. onc. said hair thinning seems to stabilize at 6 months. I started Flax, Omega -3 and Biotin regimen for my hair and I think it slowed earlier than that. I did not gain weight, but I did start walking for bone health 20-30 minutes every day with light weights on my ankles/wrists. When I walk I definitely feel less achy. I also think the Omega-3 and turmeric helped with that. I feel like a supplement junkie, but I have to say it all seems to be working. My imaging last week shows a 70% reduction in my tumor size after just 4 months of anastrozole. It is now .7 cm down from over 2 cm. My surgeon wanted to reduce it prior to surgery for better outcome as the tumor sits close to my chest wall. Anyway I think the supplements have helped me, along with drinking more water to keep hydrated, and lots of prayers and rosaries!:) All in all I think everyone responds differently, but I can tell you I feel I have tolerated it remarkably well and when you can tangibly see the results of it working as in my case, it makes the side effects I have had that much more tolerable.
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Hi again, CBK: I was on letrozole for about 5 months, I went off it due to aches and stiffness. (Some of this turned out to be about radiation induced brachioplexy and a torn rotator cuff.)
My Oncologist let me take an Arimedex holiday mid August, now I take it every other day.
Since following this thread, I take Claritin with the generic Arimedex. I think it helps.
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Mexico That's what I think should be brilliant for surgical menopausers... Ease into the AL, right?
I was not given that option... and I would love to hear how that works for you??
Thanks for your feedback Femora vs. Arimdex!!
CBK
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CBK: My check up is in a month. Hopefully we can keep at this E.O.D. dosage. I weigh 135 pounds, I've gained about 7 of that since the hyster-ooph. I mention this because maybe that helped convince her to go to 1 mg Every Other Day. All drugs have a bit of a drag -- they are still in your system even if you don't keep up the recommended dosage. So, basically, I am playing in the shallow end of the pool, with less medication in my system. I won't know if THAT's a good idea for about four years!
Still, in the old days, before they had medication, the way it was treated was to remove the ovaries. As MysticalCity notes above, there are other vitamins and supplements that can help us make it through the mandatory menopause.
Peace.
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Mexico Heather-
I hear you on the weight gain. But you know since I recently switched to brand name Armidex, my weight is decreasing. So is the swelling in my feet which I have blamed on a long- term side effect of chemo. Who knows, maybe this brand name Armidex is just what I needed. No idea if it's related to switch, but again, as everything only time with tell.
Yes, I am on quite a few of the supplements mysticalcity is advocating for above!!
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MexicoHeather- when I started Anestrozole my MO had me take it every other day for 6 weeks. I believe that was for my body to get used to it. When I started it daily it seemed most of my SE that were big - insomnia, waking and not being able to go back to sleep, some crazy screaming dreams/nightmares, etc... were behind me.
I'm just saying don't be afraid if MO puts you on daily meds. I do have SE but they're doable - hot flash, joint pain (I'm older than you & had arthritis already), had dry eye (drops for 2-3 weeks & it went away), and some weight gain. Best wishes to you!
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How is your knee doing now? I am out of physical therapy but very weak still. I am doing all my exercises but do have considerable joint pain right now. I am also very worried about falling again!
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