Significant/Scary Mood Problems on Anastrozole?

Girl53 · September 2016

All: I have now been on anastrozole for almost six months. At first I noticed the expected joint pain, but that has largely gone away, and I thought it would be smooth sailing from there on.

What has appeared, though, are significant mood problems that have felt this week like what used to be called a nervous breakdown: I am having intense anxiety, crying jags, shivering, and emotional volatility. A few days ago it got so bad that I didn't want my husband to leave me alone and I actually thought I might need to go to ER.

While I know a lot of us experience understandable anxiety and depression on this journey, what's happening for me now goes beyond that. I have never had anything like this before. I saw a psychiatrist this morning, and talked to my trusted pharmacist, who both said that this drug -- and generally the body's estrogen being taken down so low -- could be causing or contributing to the problem.

Pharmacist left message for my onc this a.m., but she hasn't called back. I think I'll take it upon myself to just stop taking the anastrozole: At my six-month check-in last week with onc, she reminded me that my BC was so tiny and early stage and non-aggressive that my recurrrence risk is very low, and that the absolute benefit of the drug for me is small (for example, reducing recurrence risk from 8 percent to 5 percent, etc.).

Would it hurt to stop the drug for a month, see how I feel, and if necessary switch to Tamoxifen? This week I felt barely able to function normally. All insight welcome.

KBeee · September 2016

I have a friend that stopped for a similar reason. Hopefully you and MO can come to agreement on what's best. Clearly it is not that drug

AmyQ · September 2016

KBee, do you mean clearly it IS that drug?

Girl, Seems like a reasonable explanation to me and if I were in your shoes, for the possible 2% benefit, I wouldn't do it. Keep us posted and good luck.

Amy

Girl53 · September 2016

Kbee and AmyQ: Thank you for your quick responses...Whew. I don't want to scare the many people who do fine on anastrozole. But I have read that there are patients who experience the problem I'm having. I don't see how anyone could tolerate side effects like this for very long, if in fact it's the drug that is causing or exacerbating these symptoms.

Kbee, may I ask for some details, if you have them, of the experience of your friend who stopped anastrozole for this reason? I keep telling my husband that I feel like someone has turned my "emotional dial" WAY up...that I feel hypersensitive, labile, and like I don't know what might happen next emotionally....like someone has taken away my "bumper pad" or shock absorbers (I would say "LOL here" were my mood better...). I keep being scared that I am going to start shaking or crying uncontrollably and that my family won't know what to do, or that I will start weeping or have to run to the bathroom at an inappropriate time.

Also read today of a few other less common anastrozole side effects, which I'm also having: weight loss, loss of appetite, shivering, muscle weakness (my calves feel rubbery).

Again, thanks so much to all, and any other insight/details so welcome.

farmerlucy · September 2016

Hi girl - I did AIs for a total of seven months. That was enough for me. I guess I just need my estrogen.

I'm not sure if you're taking an antidepressant, but I suspect my moods on the AIs were stable because of Effexor. I'm back on Tamoxifen. Believe it or not my onc thinks I should do HT for ten years. Yeah, not sure that is gonna happen.

I think you are quite reasonable in stopping it.

ElaineTherese · September 2016

Hi!

I'm on Aromasin, not Anastrozale. But, I did experience some serious moodiness by month #2. I was not surprised, as I've always struggled with hormonal fluctuations. I had bad PMS, and was depressed during both my pregnancies. I asked MO for an anti-depressant, and she prescribed Celexa. I've been fine ever since.

I was diagnosed at stage IIIA, so I have more incentive than you to take an AI. At the very least, talk to your MO about how you are feeling. I don't know whether you would be willing to take an SSRI, given your low risk of recurrence. But, it worked for me. ((Hugs))

ChiSandy · September 2016

I’m handling letrozole okay in large part due to Wellbutrin not being contraindicated for it. Best antidepressant (an SDRI) I’ve ever used. One pattern I do seem to notice, though: the majority of those who report the worst SEs of endocrine therapy, especially AIs, had chemo first. I think that having a strong immune system and more stamina when beginning endocrine therapy might make us better able to tolerate the SEs.

Girl53 · September 2016

I didn't have chemo and am generally healthy/have strong immune system, so I'm thinking I don't fit the pattern you observed,ChiSandy. However, I have a strong family history of depression and anxiety; had a very weepy/angry menopause transition, AND had almost completed tapering off my Prozac (prescribed years ago for dysthymia) when started taking anastrozole.

I spoke today to my survivorship counselor, and she told me she always recommends that, when patients start either an aromatase inhibitor or Tamoxifen, they NOT stop taking any antidepressant they're on, for at least a year.

In addition to BC and treatments, I had a really rough last fall and winter....Am thinking this scary mood disturbance is a "perfect storm" of factors.

Survivorship counselor and I agreed I would stop anastrozole for a month; re-up the Prozac; see how I'm feeling; and go from there re: trying AI again.

Wow, this has felt hard. Thanks to all, and any other insights -- and cyber-hugs -- welcome.

farmerlucy · September 2016

Sounds like a great plan. Thanks for letting us know.

Denise-G · September 2016

Girl53 - I've been on Anastrozole for 4 years and have not had any noticeable mood changes. I did want to comment on your "perfect storm" comment. I talk to hundreds of breast cancer patients. At the one year mark, (I see you recently just passed that), many, many breast cancer survivors have a lot of flashbacks, emotions, feelings they didn't feel going through diagnosis, and PTSD starts kicking in big time. I had it at that time as did my sister who also went through treatment. I'm certainly not saying the Anastrozole isn't contributing, but I think your perfect storm comments make a lot of sense.

Anonymous · September 2016

In a word:YES.

I threatened to stop arimidex (anastrole) a year ago at my regular MO checkup because of the wild mood swings: anger, anxiety, sadness.

She put me on aromasin and magically--mood swings disappeared right away. So did the trigger joint issues, joint pain, and bloating. Physiologically we are all unique. Arimidex was not my friend, yet for millions of women, it is. Others can't take Aromasin because of the same side effects. I was lucky. In a year since I switched drugs, Aromasin has mostly been a non-event, largely speaking.

Claire in AZ

Girl53 · October 2016

All: Is it worth it to try Aromasin rather than anastrozole? Maybe talk to my MO? I have been so anxious that psychiatrist put me on Prozac and a small dose of Valium every 6 hours....I have never had anything like this before and have been unable to do my part-time job. My appetite is very poor. This is scary and confusing. I stopped taking the anastrozole about five or six nights ago....should I wait until antidepressant kicks in before going back on any AI?

Molly50 · October 2016

One morning while on anastrozole I had to pull off the freeway while driving to work and call my husband because I thought I was having a heart attack. I was sobbing on the phone to him and scared to death. He talked me through the worst anxiety attack I have ever had. This was just one of many SE's I could not tolerate on anastrozole. I am doing better on exemestane but here I am at the six months mark and SE's are getting slightly worse. Still way better than the extreme problems on the previous drug.

Girl53 · October 2016

Molly: Thank you so much for sharing your experience...wow. Before this whole ordeal, I had no idea about possible SEs of these drugs. Did your anxiety make you feel depressed at all, or like you were losing your mind? This last two weeks for me have been awful and disruptive for my family. Will talk to MO. Any other insights welcome. Thanks to all who have replied.

Girl53 · October 2016

Me again...just want to add that while I am not having actual panic attacks, thank God, I am in a constant state of physiological and emotional hyperarousal....hypersensitive to both internal states and normal external events. I am even afraid to walk the dog or go to grocery because I fear I will start shaking, sobbing, or simply freeze in fear.

While I have a childhood trauma history and have experienced mild depression and anxiety in my life, I have NEVER felt anything like this. Sorry to ramble....I just want my regular mind and heart back!

Molly50 · October 2016

Girl53 I already have mild depression but I am not prone to anxiety. I messaged my MO shortly after this episode because it was on top of feel exhausted and lousy all the time. He said to take a three week break and then if I felt better start exemestane. I felt much better within a couple weeks.

Significant/Scary Mood Problems on Anastrozole?

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