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BetsyJane's picture
Posts: 127
Joined: Aug 2011

How many of you are taking Arimidex? How bad were/are your side effects?

In January I had a lumpectomy (2.5 cm) and two out of 10 nodes were positive. I have Stage II breast cancer and I am HER and estogen positive. I've gone thru my chemo treatments and will begin radiation soon. Presently I am receiving Herceptin treatments for one year. My oncologist wants me to take Arimidex for 5 years. I do not want to take this drug. I've researched Arimidex for months and found this drug to have extremely bad side effects. I read over 450 comments from Breast Cancer patients taking this drug with devastating side effects they are experiencing. Many have quit and/or switched to Tamoxifin. I told my oncologist I want to take Tamoxifin instead. I will not take Femora either. In my case, I know Arimidex is the preferred drug (over Tamoxifin) but I'd rather have quality of life and prefer to take my chances w/Tamoxifin and Herceptin treatments.

I would be ever so grateful if everyone who has taken Arimidex will please comment and tell me what your side effects were.

aisling8's picture
Posts: 1611
Joined: Feb 2010

are minimal. I, too, was really afraid to take Arimidex, but I've been on it a year and I'm okay. Hardly any hot flashes, couple of pounds weight gain which could be unrelated, sometimes cranky which could be unrelated. My issue is feet -- they ache and burn but never unbearably so and when I stand after being seated any length of time, I feel like I'm hobbling for a few yards, but then it goes away. It's really an odd thing. I walk three miles most mornings and I do Zumba twice a week so it doesn't prevent me from doing things.

For me, the benefits outweigh the feet issues.

I wish you good luck.


mwallace1325's picture
Posts: 806
Joined: Apr 2009

I'm on anastrozole, which is the generic. The first time I took it I had breathing issues, and I stopped for about a month. My MO convinced me to go back on it and the second time the only thing I've noticed is achy hip joints if I sit too long. And I know it's not related to anything but my age, but finally after 10 years of them (I'm 57) I have NO MORE HOT FLASHES. Just as we know there's an end to chemo, rads, and baldness, there's an end to hot flashes too.


missrenee's picture
Posts: 2137
Joined: Apr 2010

I have been taking the generic Arimidex since July of '10 and so far the only side effects I've experienced are minor occasional hot flashes, lower leg and ankle pain/stiffness after I am sitting or laying down for a while which goes away after I hobble a few steps and a few extra pounds. Compared to the benefit it's doing in keeping the estrogen in my body as low as possible, I'll take these side effects any day.

I, too, was an avid reader of all side effects listed on any medication I was prescribed. Not so much any more. Remember--usually most of the people who write in are those experiencing side effects--the thousands who are not or who only have minor side effects usually don't report in. As I said, it is a personal decision (like any treatment), but I'd consider at least giving it a try before you convince yourself that you're going to have horrible side effects. Just my humble opinion. This drug is a valuable weapon in fighting this disease.

Good luck with your decision--consider all options and then do what you feel is right for you.

Hugs, Renee

BetsyJane's picture
Posts: 127
Joined: Aug 2011

Thank you so much everyone for your comments on Arimidex so far. Please, please keep the comments coming whether they be negative or positive.

Has anyone stopped taking Arimidex and switched to something else because of the side effects?

Did anyone have hair loss? Wind up in the ER?

I just get a very bad feeling about this drug. I have very high cholesterol (which isn't good when you take Arimidex) and bad hearts run rampid in my family. Most doctors sugarcoat these medications and most of the time I feel like I am just another cookie cutter case. The only people I truly believe are you, the ones who have gone thru this. I knew quite a few people who took tamoxifin (including my own sister) and did well with the tamoxifin with very few side effects. I decided to discuss this issue with my surgeon and deep down) I felt she knew what I mean --- and that Arimidex causes many more side effects than Tamoxifin. I am truly afraid of this drug.

I so much appreciate if you would please keep the comments coming.

Kylez's picture
Posts: 3765
Joined: May 2009

Just wishing you good luck with your decision.

Hugs, Kylez

Posts: 265
Joined: Aug 2011

I have been switching back and forth between tam and Arimedex since 2005. I was diagnosed in 2004 with stage 3. I also had hercetin after my chemo and radiation. I had a hard time with joint pain when I was on Arimidex and felt so tired and dizzy. I also started bleeding when they first started me on it so they decided I was still premenopausal and needed Lupron shots which really made me feel even worse. Finally, I am back on tam with no Lupron and feel much better. I agree with you quality of life is important and I know that arimidex is better for me but I felt like I needed a break from it. I also have high cholesterol and osteopenia now so I feel like I need the tam to help those problems. My doctor said it is OK to switch back and forth so that is what I have been doing so don't feel like once you start with one you can't switch to the other. Good luck with your decision. Sending prayers and strength. Teri

Double Whammy's picture
Double Whammy
Posts: 2791
Joined: Jun 2010

and NO side effects. You won't know if you're going to have side effects or not if you don't take it at all. Frankly, I'm more afraid of not taking it than taking it. I don't know what I'd do if I had side effects. I guess it would depend on how debilitating they were.

You asked about hair, so I'll comment. I don't know if my hair situation (I don't have very much) is because of the Taxotere or anastrazole - it could be either, but I think it's the Taxotere because its attempted return was slow and sparse long before starting anastrazole. I hate it and I cry sometimes about it. I hate having had cancer more. I've learned that there are many women who wear wigs or head coverings for many reasons, not only as a result of cancer treatments.

I agree that what we do about our health is a personal decision. I also am well aware that before Tamoxifen (and now the aromotase inhibitors) proved that suppressing estrogen production after standard breast cancer treatments improved survival, women were having their cancers recur and metastasize and many died. I'm not interested in doing that and if there's something that has been PROVEN to make a difference for my type of cancer, I'm going to give it my best shot. I did both chemotherapy and radiation and the long term effects of those treatments can be a lot more serious to me than not getting my hair back. Those were my decisions, informed decisions. Again, I don't know what I'd do if I had some of the side effects so many women have had. The medical profession sure as heck needs to figure out effective and safe ways to deal with them!

Good luck to you. I support you no matter what you decide - the above is only my experience and what I chose.


sea60's picture
Posts: 2616
Joined: May 2010

and couldn't hack it. Terrible joint pain, difficulty swallowing and just a very sad feeling of impending doom.

I was put back on Tamoxifen.

lynn1950's picture
Posts: 2574
Joined: Jun 2008

SEs run the gamut: weight gain, joint pain, depression. Would I be without it? Absolutely not. It's worth it. xoxoxo Lynn

tufi000's picture
Posts: 739
Joined: Jun 2005

I have been on Arimidex since 2003 and believe I would have died if it hadn't just become available. If I have had side effects, they do not affect my life in any way to any great extent. I have noticed that it affects each person differently and, yes, it is preferred over tamoxifen.
I would give it a shot as you can always change or stop. Also many SAs eased up after 6 months or so. In the beginning the joint thing was pretty bad, but it isn't like that now.

Posts: 117
Joined: Mar 2011

I have been taking Arimidex for almost five years. I experience some joint pain. I also don't take it right before I go to bed because it keeps me awake. I used this to my advandage recently and started to take it about 2:00 o'clock while I am at work and it seems to pep me up a little to make it to 5:00 o'clock without feeling so tired. I am happy it is available for me to take. I hate to think what might happen if I did not take it.



Posts: 1
Joined: Aug 2011

i just started on arimidex 2 months ago after chemo (a/c & taxol) and 6 1/2 weeks of radiation. i was stage 2B breast cancer. i have some side effects--stiffness & joint pain, but they are mild. i also have tingling in my feet and swollen ankles and legs. oh, and forgetfulness. the last items started towards of the end of chemo, but seem not to be dissipating or getting worse, especially the tingling. i think these little side effects are worth it to have the insurance against the return of cancer. i am a little worried about bone thinning and hoping that a bone scan can be done early on to detect any problem with osteoporosis.

i too read about many horrible side effects of this medication, but i think those are rare. don't take them to heart. just think about not getting cancer again. peace of mind.


p.s. does anyone know how soon after starting arimidex, osteoporosis could be detected if indeed it was going to ruin my bones?

Posts: 992
Joined: Sep 2009

So far not too bad. I have mild soreness in my fingers in the morning and some soreness in my feet if I've been sitting for a long time. Both go away once I get moving.


missrenee's picture
Posts: 2137
Joined: Apr 2010

I also have high cholesterol. I have been taking Pravachol for a couple of years. My cardiologist added Zetia to help it work even better since I am taking the Arimidex. So far, my cholesterol has been at a good level--I'm diligent about getting it checked every 6-8 months. The Arimidex has not affected my hair at all.

Also, I have not noticed that I am depressed at all. In fact, I was just weaned off of Zoloft that I'd been taking for 18 months when I was diagnosed.

Good luck.

Hugs, Renee

smalldoggroomer's picture
Posts: 1181
Joined: May 2010

I have been on Arimidex ( generic ) since Jan, I too have the stiffness and inflexibility after sitting. I hobble along and it goes away. I have the burning feet also. I think that bothers me the most. But not enough to make me stop taking it. I was afraid of taking it also when I research it. But I figured I could try it and if it was to bad I would change that's all. It really is a personal choice you have to make. But maybe give it a try and see how it will affect you. I thought it would be worse then it is. Take care Kay

Posts: 332
Joined: Sep 2010

I am sorry to tell you but I had all the side effects plus more. So I have been off since the first of the year and don't want to try one of the other pills. My Onc. said they all can have the same side effects. I don't want to have those. I had a small cancer and surgeon said he got it all and nodes were all clear. He removed 8. Maybe people can be more helpful to you. Know my prayers are with you. It is what get me through the times I get unnerved about all this. Diana

cavediver's picture
Posts: 607
Joined: Apr 2010

on Armidex but thinking of switching to the once a year injection Reclast. I don't have bad se from armidex, some joint/muscle pains....... but it is a pain to remember to take it once a week, and then not have anything to eat or drink for another 1/2 hour. The once a year injection sounds so much 'easier'. My BCBS did not approve Reclast, but next month my new insurance is supposed to cover it. Hopefully, the Reclast will not cause more se issues. I am willing to do whatever it takes to help insure the beast is gone!

BetsyJane's picture
Posts: 127
Joined: Aug 2011

I want to thank everyone for commenting about your side effects with Arimidex. I am seeing my oncologist tomorrow for another triple dose of Herceptin. He will once again try to talk me into taking Arimidex after radiation (or perhaps during). I am still so undecided. I pray to God that he will help me make the right decision. Thank you all so much for replying back. If there is anyone else who wants to reply about taking Arimidex and what they experienced, please please do so. I know we are all different and all have different reactions, but at least I will know what I may (or may not) encounter. I just wish the doctors told us all the side effects we may experience. I'd rather know the "possible" side effect up front.

P.S. My sister had five years of Tamoxifin years ago for breast cancer followed by two years of Femara. She didn't get any side effects from either. She was one of the lucky ones.

Posts: 3644
Joined: Aug 2009

Why won't you consider Femara if you haven't already tried it? I've been on it for a bit over 1 1/2 yrs with no SE's.

Cerraijnly read and ask questions but there is no way to know how your body will react to anything without trying it - we are each so unique.


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