Feb 27, 2019 12:22AM Dreamer54540 wrote:
Thank you for letting me know about the arm numbness. My brand is from Zydus Pharmaceutical, never knew there was a difference in brands, I'll watch that. Hugs back!!
Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Jul 10, 2012 06:46AM - edited Nov 15, 2017 01:07PM by Moderators
I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.
I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.
Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.
Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More
Posts 15961 - 15990 (17,514 total)
Feb 27, 2019 12:22AM Dreamer54540 wrote:
Thank you for letting me know about the arm numbness. My brand is from Zydus Pharmaceutical, never knew there was a difference in brands, I'll watch that. Hugs back!!
Feb 27, 2019 12:37AM Leigh22 wrote:
Hi ladies! I havent been on here in a very long time!!! Sorry but I think this is going to be long!!! I have been on Arimidex for 6 years and have decided I am DONE! I took my last pill last night!!! Yay... can you tell I'm happy!!! I wanted to get off it last year, after 5 years on it, because I had osteopenia but was told I needed to try for 10 years. Then after a newer study said 7 years was as good as 10 years on an A.I., I was told to do 7 years. I had one more year to go but I had to stop. First my internist said my bad cholesterol and triglycerides suddenly jumped way high, my blood pressure has been high this last year, and I just got diagnosed with osteoporosis. Kind of overwhelming. I have put up with the mood changes, the sex life changes, etc., but the thought of taking more drugs with more side effects was overwhelming. I was set to get on cholesterol and blood pressure meds in March, and was considering what bone density meds to take, BUT I have been having excruciating migraines that are insane and lasted 12 days this time! At Christmas, the migraines lasted 17 days!!! Thats where I'm saying enough is enough. My Mom has mini strokes, Grandma had several strokes, and I am having non-stop migraines with aura and am at high risk for stroke as it is. Ugh!!! I think I just want some encouragement that I'm doing the right thing. I'm scared. I have been on this little pill so long it's been my security blanket. I feel it is what has kept me alive for 6 years. But I feel like at least I stayed on it for 6 years. Thats a long time and by stopping Arimidex, I won't have to get on bone density meds, (apparently your bones start to build back up after stopping the drug), and with the diet and exercise I'm doing, I probably can get my cholesterol and blood pressure back to normal. And please, I hope I'm not scaring anyone new on this drug! I actually did well on it for a long time. It got better. Hot flashes were bad for first 4 months but then I didnt notice them. I did have headaches at first... probably the drop in estrogen... but started taking it at night and then no headaches. If anyone has any questions about my 6 years on Arimidex, please ask! 😊
Feb 27, 2019 06:31AM Ingerp wrote:
Leigh--congrats on doing six years. I'm sure you're doing the right thing for you. That's remarkable that you stayed with it for that long--keep in mind a lot of doctors are sticking with five years.
I wish more women would come back when they go off it--gives the rest of us hope!! Best wishes for improving health as you go forward.
Feb 27, 2019 09:07AM Leigh22 wrote:
Thank you Ingerp! I think I am doing the right thing, but I was plagued with second-guessing and doubts and to be honest, fear last night. But I think my body is telling me it's time to stop, though. Also, it's good to mention that my DEXA scan in 2012 showed I was already in Osteopenia, so that's why I am already in osteoporosis at 6 years. I am very happy I was able to take it that long. Honestly, I would have stayed on it longer if it weren't for the new migraine headaches. Apparently I am a very "high risk of coming back" case because of 1 node positive, cancer in both breasts at same time, and HER2+ so my ONC has never wavered in wanting me on it for 10 years. So last year I got a 2nd opinion and he said with new studies, 7 years has same benefit. I have already started a diet that helps keep your estrogen levels low, and also builds up your bones... tough balance.
Also last year I was sent to an endocrinologist to put me on osteoporosis meds... she had me urinate in a jug for 24 hour period. Turns out I had over 500 mg calcium in my urine. I have Hypercalcicuria, hereditary condition passed from fathers. Explains why I already had osteopenia in 2012 at 52 years old. I retained salt and always get puffy, but the calcium was leaching from my bones and out my urine. She put me on a diuretic to make the salt go out and the calcium stay. Also was given a shot of Prolia for bones 2 years ago. I k ew nothing about it. I usually do my research but trusted my Dr. It was horrible for me... stiff, painful neck for a weeks, constant runny nose and catching every sickness around, and a general feeling of bot being well, and jaw aching and pain. It was worse than the AI for me !!! So I had no more of that!
I can say that the hot flashes were intense for the first few months on Arimidex, but then after 4 months they subsided, less intense and less frequent. It took me 2.5 years to get my energy back from chemo in early 2013. I did not get any joint or bone pain. Only the last 2 years have I noticed any slight thinning in my hair. But I have very crazy thick hair so it wasn't a big deal and it's not noticeable. That avatar is me a month ago so my hair is good. I did notice mood swings on this drug. No problems with sleeping tho. Gonna admit it did take the sex drive away and there were dryness problems. The product called "Pink" was great.
Whenever I would think about stopping the drug, I would think I can fix my bones and cholesterol,... I can deal with that... but I did not want to deal with cancer again. That, to me, was way worse and I was going to do everything I could to keep it from coming back. Sorry again this is so long!!! Think I needed somewhere to unload! Lol
Feb 27, 2019 11:26AM Magari wrote:
Can't remember who asked up thread why everyone is taking Claritin, but the answer is that it can be helpful in reducing joint pain.
My oncology PA said it's completely harmless and fine to take daily indefinitely. So I take a generic version every morning. Along with Naproxen (also for aches and pains) and Omeprazole (to protect my stomach.)
I take my Arimidex before bed, along with 3mg Melatonin and Ativan (for sleep) and 37.5 mg Effexor (for hot flashes). The latter were getting better for a while, but have been more frequent in the past few weeks, so I may increase that dose to 75 mg. (I've been on Arimidex for 8 months at this point.) I see my MO on Friday and will ask.
My other main side effect these days is uncomfortable gas/bloating. I've been to a GI specialist, and tried a low FODMAP diet, which didn't seem to make much difference. He said it could be the Effexor, so I will also be asking my MO if there's an alternative to minimize the hot flashes.
Feb 27, 2019 12:19PM PontiacPeggy wrote:
Magari, my PCP told me to stop taking Prilosec IMMEDIATELY about a year after I had started anastrozole. She was new to me and said that Prilosec damages bones and what with Arimidex possibly doing the same thing, don't take it. I switched to Pepcid which she said was fine. I also take generic Fosamax. So far no change in my bones has shown up after 4-1/2 years (mild osteopenia). I recommend that you check with one of your doctors about taking Prilosec or just change to Pepcid on your own. I've also been taking Claritin for several years. Since it doesn't help my allergies, my PCP said I could take Benedryl too with no problems (and there haven't been any).
Feb 27, 2019 12:33PM Ingerp wrote:
Leigh--I love your posts and you look beautiful!! Come back any time. :-)
Feb 27, 2019 02:40PM Snickersmom wrote:
My anastrozole is Accord. I don't really have awful problems with it. Hot flashes once in a while but they don't last very long, some joint pain, and that's really about it. Saw my MO and BS yesterday and my MO said to take Claritin and see if that helps my joints.
Feb 27, 2019 04:02PM MamaOz wrote:
For sharing.. its always nice to hear from those of us farther along.. vongrats on making it 6 yrs on the Arimidex
Ive been on it 1 1/2 yrs. the aches and dryness issues
My cholesterol has already spiked! And Im trying to get control..
I have osteopenia bordering osteoporosis. I took my first generic boniva last month
Ive been fighting it for a year.. I think its made my aches worse.. so I may stop .. I thought about prolia but figured it was better to try a month long med instead of 6 mo
In case the side effects were bad
Its just crazy trying to balance it all to stay healthy!!
Lately ive been feeling like I have ear aches but my pcp said my inner ears looked ok.. which was dissapointing as I hoped it was an ear infection
So Im a bit worried.. my 6 mo with my MO is in a few weeks
Again thanks for sharing and all the best!
Feb 27, 2019 04:50PM FaceForward wrote:
Egregious - I think it's unanimous! We all agree with your statement that we should be exempt from dealing with any other health problems. Thank you for vocalizing that. 👍
I too was wondering why everyone was taking Claritin. Thanks for those answering that it's for bone pain. How/why does that work? Will any antihistamine work that way or is it just Claritin? I remember hearing some reports that regular use of antihistamines have been implicated in Alzheimer's disease but would have to find that info again. ALZ is what took my mother but I haven't been keeping up with that research lately.
Tomorrow afternoon is my MO follow up appt. We'll decide then which AI I'll be on. I'm dreading it. Once the AI is set, I'm suppose to meet with my bone health specialist again. I'll need to do a 24 hour urine collection and then we'll decide which bisphosphonate I'll take to counter the side effects of the AI's to prevent a cancer return.
Somehow this all makes me think of the old nursery rhyme, The House That Jack Built. This is the dog that worried the cat that killed the rat that ate the malt that lay in the house that Jack built. One thing (one pill) leads to another and I'm just dreading all of it. After a few short days of feeling good, tomorrow I go right back to being a patient again. Forget about the cancer, the stress alone has probably shortened my life by 20 years at least!
OK. Enough venting. 😶
Feb 27, 2019 05:21PM HikingLady wrote:
FaceForward Ha ha about the House That Jack Built...
I've been on Anastrozole for 3 months. I do have osteopenia, so I have Zometa infusions every 6 months to help with bone density. The first infusion made me feel as if I had the flu the following day, and then I was fine after that, so I'm not dreading the next one. I certainly appreciate the convenience of not having to deal with a bone medication as an additional pill.
I have no bone pain, but I have some joint stiffness. I have hand neuropathy, but my MO says it's a residual chemo effect, and probably is not due to the AI. I have Not Bad hot flashes--noticeable but not awful and not often. If my joints are achy which is sometimes, I take an NSAID, like Ibuprofen or Aleve, or Rx Meloxicam. I already had some arthritis, so this isn't much worse. Exercise helps a lot. The stronger my muscles are, the less my joints complain.
Feb 27, 2019 06:12PM Snickersmom wrote:
My MO told me yesterday (and many times before that!) the more exercise I get, the better I will feel. Well, I already knew that!!! Just have to start doing it. I can't take anything like Fosomax, Boniva, etc. because of the tumor I've had twice in my jaw, which is not related to cancer. I have to stay away from the biophosphates. My Dexa scans have been really good, so for now I don't have to do anything but make sure I get plenty of calcium. More pills, more pills, more pills. Seems like one thing leads to another and you hit the nail on the head, FaceForward! It is just like the house that Jack built!
Feb 27, 2019 07:05PM Magari wrote:
Peggy - Thanks for the heads-up! I will definitely speak to my MO about switching to Pepcid. Lots to keep track of still....
Feb 27, 2019 07:10PM PontiacPeggy wrote:
You're welcome, Magari. I had heard that Prilosec is hard on the bones but dumb me didn't put 2 and 2 together to realize that AIs and Prilosec are not good together. I find Pepcid works just fine for me.
Feb 27, 2019 08:25PM GrandmaV wrote:
leigh22, I've been on aromatase inhibitors almost 7 years. (April 1) Letrozole the first 6 and 1/2 years, side effects were so bad Dr. Let me have a month break and then started anastrozole which I'm still on. I'm struggling to decide if I want to continue or not. I feel the same way you do. The side effects are wreaking havoc on my body. I'm faced with taking more medications to counteract side effects. High, triglycerides and cholesterol, bones thinning, trigger thumbs, swelling. I had the genetic test to see if 10 years were better than 5. And of course there's a significant risk if I stop. It's hard to know if the risk/benefit ratio has shifted. I mean I feel like it may be doing more harm than good at this point, but at the same time I'm worried the cancer will return again. I see my cardiologist in April and will see what shape my heart is in. I'm not sure I'm willing to go another 3 years on these pills.
Feb 27, 2019 08:32PM - edited Feb 27, 2019 09:00PM by Lula73
Snickersmom - what about Prolia? I saw my PCP yesterday and he said because of the previous cancers I've had I can't take any of them except Prolia. He also said that there are several new ones coming in the near future that I should be able to take. Right now he’ prefer I wait unless DEXA comes back bad.
Feb 27, 2019 08:45PM - edited Feb 27, 2019 08:47PM by Lula73
For those of us who all of a sudden have high cholesterol issues...Saw PCP yesterday (he's a cancer warrior too). LDL is up significantly, total cholesterol is up too. Both flagged as 'High' on the labs. But HDL is through the roof. HDL (aka good cholesterol) is cardioprotective and balances out the high LDL (bad cholesterol) numbers. Because my HDL is so high he says I'm good. If HDL was not so high I would need to take something. Dietary changes and increased physical activity will not be enough to combat the cholesterol rise as it's the liver's response to the AI therapy/lack of estrogen. It's not what you're eating. It's not that you're not getting enough exercise. So if your HDL isn't high enough to balance out the LDL, ask about taking Prescription strength supplements to increase HDL (far fewer side effects than a statin). If that's not enough, ask for both the supplements and a statin.
Feb 27, 2019 09:05PM Snickersmom wrote:
Lula - my MO says as long as my Dexa scans remain good, we will just leave things the way they are. Good to know they are coming out with some new options.
Feb 27, 2019 10:46PM Suzyshacklechick wrote:
So ladies. I’m happy to say my throwing up all night was a bad case of food poisoning and not a side effect of my first week on Arimidex.😳. Never thought I would be happy to have food poisoning, but being new at this, and thinking I had to feel like that for 5 years , I am much relieved, and will not have Oysters at that place again! Phew!!!😃. Thank you all for listening.
I also didn’t realize brands mattered. My bottle is from Accord. I’ll ask for the other when I get refilled next month. Thank you all
Feb 27, 2019 10:49PM Peregrinelady wrote:You might want to see how you feel first. I switched from Accord to Teva because of all the talk here and found the side effects were worse. I am now back on Accord.
Feb 27, 2019 11:00PM Suzyshacklechick wrote:
Good idea. I will see how I feel on Accord and see how I feel. Now that I know I won’t feel like that food poisoning night 😳 Thanks
Feb 27, 2019 11:21PM Peregrinelady wrote:Yes, oysters are delicious, but after a bad batch, I am also avoiding them now. Glad it wasn’t the pills upsetting your stomach.
Mar 1, 2019 12:20AM CindyNY wrote:
Today, 3/1, is my 1 year date for starting Anestrozole. BF said not sure he should say congrats. I said, YES, because its one year down.
Leigh - doing 6 years is GREAT. Deciding enough is enough, with health havoc, is fine. You have to do what's best for you, always. As I stated above, 1 down & 4 to go, I hope no more than that. Best wishes to you & thanks for keeping us in your loop. ❤
Mar 1, 2019 12:48AM Suzyshacklechick wrote:
Cindy, congratulations on one year!🌷❤️🐾💐
I am 9 days today! Slow but sure but we have to celebrate our milestones! I hope you did something nice for yourself. ❤️❤️
Mar 1, 2019 05:45AM Ingerp wrote:
Cindy--congratulations! That is a wonderful milestone. Good to hear you're plowing through. Hopefully it isn't in your brain space much any more.
Mar 1, 2019 10:00AM BadLuck wrote:
Wow! Scary article I just read from American Cancer Society on research & the link between women taking Anastrozole & having a huge risk of getting diabetes! Now I know why my blood sugar level jumped up to 6.4 within a short time of being on this hormone. I started it in August & have severe joint pain & arthritis from it & hot flashes, mood swings & hair thinning! Not to mention now close to getting diabetes!! No sense in going off the hormones now & risking cancer again because they told me once I'm actually diagnosed with diabetes I'll always have diabetes & can never be cured of it. Breast cancer & it's horrible treatments are devastating! I kept telling myself that I'm going to beat this thing & live a long life ... after finding out that the Anastrozole will give me diabetes, I feel worthless, doomed & feel like giving up
Mar 1, 2019 10:56AM Spookiesmom wrote:
I’ve had diabetes for 19 years, wasaaaay before cancer came into my life. I’ve never felt doomed. Yes, it’s true there isn’t a cure for it yet. But it can be controlled quite well with diet and meds. For the majority of people it is genetics that will make it manifest itself. Not that candy bar you ate
Mar 1, 2019 11:12AM BlueGirlRedState wrote:
BADLUCK - I quit anastrozole after a few months becasue of SEs. (Joint stiffness, trigger finger, worry about oesteoperosis etc). After several months of no hormonal treatment, I started Tamoxifen. DR. was not supportive of quitting anastrozole, but did support my decision to use Tamoxifen. Link to diabetes is new information, and scary. I worry about diabetes because of family history and eating habits when I was younger. So far fast blood sugar levels and prediabetes check have come out ok, but I wonder if 3-5 year check is enough. A week ago I heard a presentation for diabetes control from an ND. She really emphasized limiting all carbs, no/little sugar, fiber, exercise, stress levels. I think she was probably more conservative than most primary care givers on acceptable HbA1c, blood sugar at rising and 90 minutes after eating. She mentioned that the diet she advocates is harder for vegetarians, and that a good multi-vitamin, supplements are probably needed. I eat a lot of carbs, cutting back will be hard. I do not eat much meat. I like salads, but eating like a rabbit, does not sound fun.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. 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 sentinal 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 do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.
Mar 1, 2019 12:54PM Snickersmom wrote:
Our oldest daughter has had juvenile diabetes since she was 10 - she's now 48. She does extremely well because she is always counting carbs and watching what she eats and drinks. Same can be said for adult onset diabetes. We have no history of either kind of diabetes in our family. None. Eating habits at an early age and/or lots of sugar hadnothing to do with it. I felt so guilty until her docs at Joslin Clinic in Boston said quit beating yourself up. There is nothing we could have done. Shit happens. My husband was diagnosed with pre-diabetes about 8 years ago. We went on Weight Watchers, started walking and exercising, and he lost 68 pounds. When they tested his AiC, he tested in the normal range. Best thing to do is watch the carbs, as little stress as possible, and exercise.
Mar 1, 2019 04:35PM WorryThePooh wrote:
I haven't posted here since beginning my radiation in December, as life has just gone past in a blur since then. I am supposed to start taking the Anastrazole now, however I am pretty terrified. I know some people say they don't have any side effects, but it seems reading through this thread that most people do feel not too great on it.
The thing is we are booked to go away at the beginning of April for a one week holiday, and I really don't want to be feeling crappy while I'm away! My doctor was not very keen on my delaying the start for a month, but I am concerned about going to a foreign country and feeling sick/joint pains etc possibly?
I don't know if my delaying it is wise or not. I would much appreciate any thoughts or opinions on this. :)