Psychological reactions to aromatase inhibitors.

brutersmom

I'm sure this has been discussed on other pages but I want to start a thread specifically for this discussion. For the second time, I have had a severe neurological response to Aromatase inhibitors. The first time I was told there is nothing that would help so I quit taking the meds That was 6.5 years ago. I recently had a recurrence and was put back on the meds. When I say neurological response, I am referring to aggression, anger, bed soaking night sweats, sleeplessness, inability to focus, thinking that won't stop, suicidal thoughts, wanting to do dangerous things, feeling like you are going crazy, wanting to hurt others for things that in the past never would have bothered you, etc. I have no psychiatric history I did have mood swings during menopause which was treated with a mild anti depressant. Fortunately I have a wonderful palliative care doctor who has been helping me move through these symptoms.

I feel like there are many women out there, who aren't as fortunate and have doctors that do not take them seriously or have know clue this issue can exist. What I have also learned that there are no articles out there to use as ammunition to get our physicians to help women in this situation. I found it interesting that during my crisis the first doctor I saw, felt that this happened because some women have higher levels of testosterones then others and when you go on estrogen your body can no longer turn testosterone into estrogen so your testosterone levels increase and cause these symptoms. My regular oncologist believes something malfunctions in the brain with the lack of estrogen. They don't even have a good understanding of the cause. Either way these symptom can be managed. I have achieved relief through Effexor and hydrothorizine palomate and I am able to stay on my first line of treatment for now. I am hoping others will share their issues, ask for help, and support one another. You are not alone.

vlnrph

I also stopped aromatase inhibitors early due to side effects. For me, it was more the physical strain of achy joints than the neuro pysch syndrome you describe. Since I’m a violinist, stiff fingers are not good. However, having a topic like this on the palliative care forum is highly appropriate and will be helpful to others who find themselves going down this same road.

As a retired pharmacist, I want to mention taking gabapentin for the night sweats which may happen with anti-estrogen therapy. Upon starting fulvestrant injections almost 5 years ago, I needed 600mg at bedtime to cut the number of episodes in half (from 5-6 down to 2-3). Recently I reduced the dose to 300mg since now just one, sometimes none, occur.

Cotton takes too long to dry so, unless you want to get up and change linens, consider using polyester “winter fleece” sheets year round. In addition, I keep a couple nightgowns handy. Then, when I awaken, the damp one can be peeled off and a new one popped on.

brutersmom

Thank you for sharing. In 2015 I had tremendous knee and back pain along with everything else. When I stopped arimidex my surgeon suggested I work out at the gym that some early studies were showing that it slowed down progression. I don't know if it is true but what I do know is that exercise 5X's a week has kept my joints from getting sore an improved my deca scan over a 7 year period.

lotusnoiramethyst

"When I say neurological response, I am referring to aggression, anger,
bed soaking night sweats, sleeplessness, inability to focus, thinking
that won't stop, suicidal thoughts, wanting to do dangerous things,
feeling like you are going crazy, wanting to hurt others for things that
in the past never would have bothered you, etc"- That sounds like me in a nut-shell. I am also on Arimidex (anastrozole) but low-dose (1mg). I brought this up with my ex-oncologist and he flat out told me "it's better to be alive and a bitch than to be nice and dead".

brutersmom

lotusnoiramethyst. My oncologist in 2017 told me to learn to live with it. I quit arimidex. I am sorry you have one with the same attitude. In my opinion someone like that should find a new career. I am now stage 4 and I have a new oncologist. Makes me wonder if I would be stage 4 if he had taken me seriouly. I also have a palative care Dr. My oncologist gave me effexor 75mg. It helped a lot. I had to have the dosage increased recently and now I take 150mg. It has been a game change. I am not saying I am 100% because I still struggle with some sleep issues but nothing like before. I will say 95%. I don't think some of these Dr.s realize how serious the side effects are for some people. Not a lot of people get this bad, but a small % do. My oncologist said in 30 years he has only seen 3. I am the 3rd. My crisis happen this time while my regular doc was on vacation and I saw a non breast cancer Oncologist. She likened it to a man taking anabolic steroid. And was very helpful getting me through the crisis. It needs to be taken seriously.

gailmary

Darn those male Dr's. My old pcp lost me for that very reason. New one last week. A woman. . I can't believe I've been to stubborn to switch sooner.

Do they really think we are just whining and want sympathy? my SE have not been that bad. But it sounds like the meds triggered some wierd mental illness. May you have better luck with those guys going forwar.

brutersmom

Gilmary. It doesn't really trigger mental illness. I have a lot of it in my mother side of the family. It is a response to lack of estrogen. My drs liken it to men on anabolic steroids. And how it leads to anger and agression. There aren't many people that respond this way. Getting oncologist to acknowledge it has been a huge challenge. I have been fortunate this time around with my current Dr's. understanding that this happens.

artwish

This has really helped. I also got little help with my SE.. I will now go and really push for a change to a name brand. I even mentioned that I had to take a name brand Thyroid med. years ago for this same reason. You have told me that there is hope. Thank You.

brutersmom

Artist, I am so sorry you are struggling. I aam glad this article helped. Aromatase inhibitors seem to hit some harder then others. I have been on them twice with the same response. I just finished reading an article the said about 4% have abnormally sever response to these drugs. I was fortunate the second time around to have Drs. who were familiar with the response. One thing I did learn was that having sever night sweats is what most Drs. will treat. They acknowledged that my other symptoms were real but wrote on my chart for insurance reasons that it was for night sweats. One Dr. even told me that there was not enough proof that my other symptoms were from letrozole but she had seen in once or twice before and believes they were.

artwish

Insomnia is the big issue for me. Some days I do not sleep at all. Mostly sleep 2-4 hours at best. Then I crash for a day. I also have panic attacks and I think that they are from the insomnia. My night sweets have improved but I have hot flashes all the time. My eating issues have also gotten better and I am putting weight back on. I will finish my 2nd year of Anastrozole in Sept.. I hope insomnia is considered a good reason to switch to the brand name.

Thank you again for your information. Take Care.

brutersmom

Do you have palative care at your hospital? Get an appointment or referral from your Dr. I was seeing one and she was a great help in making sure my issues were managed. Ask about an antidepressant. I still get episodes where it is hard to sleep but most of the other symptoms are gone.

artwish

I did start an antidepressant in April. Next step is increase dose. I used palative care for my Mother but will check that out next. Thank You Again

artwish

Gaining weight again, back to 220 lbs. The antidepressants are making things better. I am calmer.

Had a 6 mo. sonogram and the PBFs were stable. Trying to get a 3D mammogram, since I can not have a MRI.

brutersmom

The first time around I did gain weight. Since my Dr. In 2017 didn't believe my side effects were as bad as I said they were, I ended up going of the meds. I have not lost or gained weight since my mets diagnosis in 2023. Back in 2018 I joined a gym. I eventually signed up for personal training and was coached on diet. I made significant diet changes and started eating healthy. I have worked hard to stay active. In July 2022 the miniscus tore of my knee. I continued weight lifting but had to lower my weight but had to stop cardio. It took over a year to get cleared for surgery and get it rescheduled. By the time I had surgery I could barely walk and the first month of recovery was hard because of the amount of damage. I did gain about 5 lbs during this past year. It's been 6 months since surgery. I am hoping that now that I am pretty much pain free I can become more active and get rid of those extra 5 lbs. These meds make everything so much harder but I do believe if we really try we can move toward that goal. The meds and this stupid disease just make it so hard.

bcincolorado

Side effects are terrible. I did try the meds to combat them but decided would rather suffer and take them and not die from cancer. Did all my meds though. Glad I did. So far have kept it off from coming back even though since being checked all the time. Hang in there. You are really not going crazy from those meds even though they think you are right now.

artwish

Water fitness is now my workout of choice. My arm and leg were broken. 8 screws and a metal plate in my leg. 13 screws and a metal plate in my arm. Bone pain in them has increased. I was a weight lifter and speed walker b-4. Hope you have a place to workout in water. Bones have stayed stable so fare.

I had 8 months of PT but still had a frozen shoulder. Water workout has fixed that and I am off pain killer.

Get on an antidepressant, even my low dose has take my panic attacks and anger away.

brutersmom

Artwish, water aerobics are a lot of fun. I have a friend who teaches Zumba and Swett. (Workout class). My daughter also has a pool. It has really helped with my knee recovery. I still do strength training at the gym and I am fi ally getting back to where I was. Keep working out. Walking or lap swimming can help as well.

brutersmom

Bcincolorado. I am glad you are able to handle aromatase without meds. If you read about my side effects in my intro article you would understand stopping was not an option. I went for almost a whole year on 2 hours sleep a day. I was working at the time. My dr.s blew it off as it was not that bad. Actually it was probably worse. Once I finished radiation I never had anything but a mastectomy. I was given several breaks from aromatase inhibitors and tried them all. I was me during the breaks but as soon as I was back on them I became a horrible person. I tried to hurt people. I was still working and I would become really irritated with people and say mean things. Eventually I had no desire to live anymore and the Dr wouldn't believe me. I went through to oncologist and one people just loved and said how wonderful he was. He told me I was making my symptoms up. I did try suicide once then called my pcp who told me to stop the med. My recurrence was a distant recurrence. Probably would have happened anyway but at least I had 6 good years until it happened. Taking the meds is definitely a plus but not a guarantee. This time I had a different Dr who believed me. He quickly got me on meds for the symptoms. When he left he told me to switch oncology center because the other drs did not believe that some patients do have very severe mental changes from lack of estrogen.

artwish

I have lived in the same town for 34 years, It is very frustrating when your Drs. are new and know nothing about you. They only know you after you are sick. The first few months of treatment move fast. You are cut off from the Dr. and communicate through the Nurse that does not know you either. I was pretty much on my own when all the SEs got really bad. She basically said to go to my GP and fellt something ,other than the new meds., was wrong with me. I also had a new GP. It was almost impossible to get anyone to help me and to them I was being "difficult”. My GP witnessed a panic attack at her office so she came to understand how bad things were for me. Now my OC is retiring and so did the surgery Dr. With all new Drs. again, I am going to try a different OC in a different city.

brutersmom

Things are changing fast in the medical world. I wanted to find a new pcp. 9 months wait. Nurses in the oncologists offer take 48 hours to return calls then tell you there is nothing to do but the pharmacy tells you to call immediately if you have certain side effects. I actually am switching everything to a hospital about 15 minutes further then my current hospital. My husband complained about the drive when he went with me the first time. After he met the staff and Dr he decided it was worth the drive.

lillyishere

Letrozole caused me unbearable bone pain, forcing me to switch to Exemestane. While I feel much better physically, Exemestane has had a strong impact on my brain. It has caused severe insomnia, where I can’t sleep more than 4 hours even on good nights. I’ve become forgetful, unable to focus, and strangely, I wake up with an inexplicable sadness. I’ve never had any mental health issues before, nor does anyone in my family. It’s clear that Exemestane is the cause. My greatest fear is the possibility of recurrence, especially knowing that my sisters have also suffered terribly on these powerful medications.

brutersmom

Lillyishere each one if use is so different. Yesterday I read an article about menopause rage. It described my reaction to aromatase inhibitors almost 100%. The insomnia you describe is a big issue. I averaged 2 to 3 hours before my Dr prescribe effexox hr. I also got terrible night sweats. The lack of estrogen really makes it hard. Talk to your Dr, ask your oncologist, is they are clueless talk with your pcp or gynecologist. You don't need to suffer. For me the lack of sleep from these meds was a big issue. It effects us in so many ways. I took a low dose antidepressant during menopause for very similar issues and it really helped. Don't let the meds win. Find a Dr that will help you or educate them.

gailmary

LILY. I'd be willing to bet the doctor would say it is not the Extremstane causing the problems. But just the lack of estrogen which needs to be low to keep cancer at bay. You are experiencing very common effects of breast cancer treatment. Both the depression and insomnia.

Sorry.

pemala

Thanks @Brutersmom and @Lillyishere for your posts. I began using Tamoxifen in March 2024 (worked like magic with bad side effects - bone/joint pain was the worst for me) and now use Letrozole, since Aug/Sept. Your posts have helped.

It really reads as if you need to switch Rx. From experience,

Letrozole packaged by a different manufacturer can even make a difference. And, it's sad to say that in the 21 century there's still an enormous amount of gender discrimination - here, exhibited by male doctors towards female patients.

(Here's an incredible story: In late 2019, I experienced a group of male doctors denying I had breast cancer, when the tumor was bigger than a golf ball. Their Mammogram machine didn't read my dense breasts, and they actually didn't know what dense breasts are. They even refused to prescribe an MRI, after I explained the phenomena of dense breasts. I then found a female doctor, and got the MRI. I still wonder how many women they misdiagnose annually. And, if they actually care.)

I also sensed much higher levels of aggressiveness immediately after switching to Letrozole. To combat it, I'm very mindful and keep watch of my level of reactions. The aggressiveness isn't dangerous to myself or others, while it's interesting to maybe understand the effects of surging levels of testosterone. ;) Advice : When you know you're having a Rx reaction, try watching your mind like watching a movie - you see and understand what's going on, but don't get personally sucked into the negative Rx reaction. If, for example, a negative Rx reaction caused hives to appear on your arm, you could see them, but not freak out. Does this parallel make sense to you?

For me, fatigue wins over the sleeplessness, and it's my wound that almost constantly drains excessively at night, while regular night sweats aren't an issue.

Good luck with finding health care providers that are better balanced. I'm so fortunate to have an incredible doctor, and I wish for you to find the same quality care.

brutersmom

Pamela thank you for sharing. The reason I started this post was for the small percentage of people who over react on the meds to realize they aren't alone. That a good Dr won't tell you that you really aren't that bad and work with you to get is resolve. I am stage 4 and I recently switched drs. She recommended I switch to Fulvestrant which are shots but they have made a huge difference in how I feel. I am now working my way off effexor. I feel like I have been given my life back mentally.

pemala

@brutersmom Fabulous!