Tamoxifen rage

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I don't know if I can take this drug. I've been reading on here all night since I'm now freaked out having a good feeling sorry for my self. I have a history of not sleeping well already. About 20 years ago for no reason I was up for 3 days straight. Had to call out of work all 3 days. Basically had a nervous breakdown. Still not sure why. ( By the way is there a thread we can ramble in? I couldn't find a more appropriate place)

My Dr. lied to me. I asked if there was a smaller dose to start out with. She said no. So prescribed me the 20 mg. ( standard from what I'm reading) But apparently there are 5 and 10 mg?! You'd think they'd rather have some kind of compliance than none at all.

But , so for me lack of sleep makes me cranky. Too much lack of sleep and I'll be a mental basket case. So I'm guessing night sweats = up after that. I can't afford to become a raging b*tch. I need my job( whenever we get to go back to work)

I looked up percentages of people taking this drug and mood swings. It seems to be 6%.

Just curious if you guys think that since it binds the receptors for estrogen if you then become testosterone dominant? I don't see anyone or any side effects listing increased acne/facial hair. Or do you think it's just rage from stress + lack of sleep?

Comments

  • gb2115
    gb2115 Member Posts: 1,894
    edited April 2020

    I just found a study that shows no effect of tamoxifen on testosterone.

    I'm sorry you are having bad side effects. How long have you been taking the tamoxifen? I never had emotional problems specifically from the tamoxifen, but have pre-existing anxiety. You probably know this, but reading things on the internet in the middle of the night is only going to make mood swings and sleep problems worse. Can you set a scheduled bed time and maybe do some relaxation prior?

    I'm preaching to the choir here---when I start internet reading it's super hard to stop, almost like an addiction. I struggle too, and it can really mess with you mentally.

  • flashlight
    flashlight Member Posts: 698
    edited April 2020

    Mareny109 , I started the 20mg dose and after 2 weeks had terrible bone pain. After reading many post I took a week off and cut my 20mg tablet in half (pill cutter) and took 10mg for about a month. My MO was not aware I was doing this. Many decrease their dose without their doctors knowledge. When I needed a refill I asked for a 10mg tablet and started taking that twice a day. Some don't have any symptoms at all. You won't know until you start. I have found one good side effect is my skin I had some adult acne that is now resolved. I am postmenopausal, but when I went through menopause I had all the terrible side effects just like my Mom did. My sister had more of a mild form. Everyone is different. Now the Tamoxifen makes me more emotional at times and I continue to have hot flashes. My advice to you is start slow at 10mg and see how you do. There isn't a 5mg dose and the pill isn't that large. Good luck to you.

  • Mareny109
    Mareny109 Member Posts: 34
    edited April 2020

    Thank you gb2115 and flashlight. I'm not taking the Tamoxifen yet gb2115. I'm scared I'm going to get these bad side effects. I took a progesterone only birth control pill once for I think it was about a week. It was scary. I was so angry. It was totally the pills. Of course at the time the obgyn was just like give your body 3 months to adjust to it. Ummm. I would have lost my job, my apartment after that, any friendships I had, ect.

    I also know from my own years of getting to know myself that without sleep that A.) I become a useless turd and B.) I can get really pissy.

    Flashlight, I might have to try that. I see alot of women have done that on here. I just wish she would have prescribed 10's.When you took that week off did the bone pain stop right away? Like if I try this stuff and it's not for me can I stop and go "back to normal"?

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2020

    I'm sorry you are having such a hard time with the SE of Tamox right now. Try to reach out to your MO and take the lower dose and take it twice a day to see if it helps any with your sleep. Mine had me on a lower dose and took in the morning and night. I took it 5 years and then went to AI--Letrozole (Femara) at tat that point. Yes.....Tamoxifen does interfere with balance of your hormones since your cancer feeds on them.

    I had decided when I woke up with hot night sweats a few times to keep an ice pack in the freezer and some of those cool pops (sugar free). Sitting with an ice pack on my head a few minutes and eating that cooled me down enough I went back to sleep ok. I kept working all through my Tamox treatment ok.

    Just keep telling yourself it is better than getting cancer again.

  • edj3
    edj3 Member Posts: 2,076
    edited April 2020

    Here's the thing. You decide what you want to do. If you are not comfortable starting with the 20 mg dose, then cut the pills in half (a pill splitter works well). Take it every other day. See how you feel. If you do experience side effects you cannot live with, then stop.

    But until you try, this is all speculation.

    Full disclosure, I did try and I had other side effects that interfered with my quality of life. I no longer take the drug, my choice. But you'll notice that I did try.

  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 77
    edited April 2020

    Mareny, I get your apprehension. I have pre-existing anxiety. I didn’t ask my MO, I just split mine in half for a week (10 mg), then split again for a week (15 mg), and am now up to 20mg. I did just start Effexor XR two weeks ago which has been life changing as I seem to have a lot of emotions. Other than that, I am tolerating it. Trust me, I hate medication. Some people can’t tolerate it, but I also feel if I never looked for the side effects, they would even be less. But, this anti-depressant is a godsend for me (especially during these times).



  • gb2115
    gb2115 Member Posts: 1,894
    edited April 2020

    Hey badluckbdaygirl---how long did the effexor take to kick in? I might need to go on that. PCP offered because work stress (medical, still have to go to work and I work for a monster and I will probably eventually catch the virus) has been eating me alive. We went with prn Ativan instead, but something like effexor would probably be safer in the long run. Plus I can't really take the Ativan at work...and that's when I need it most.


  • ---faithhopelove---
    ---faithhopelove--- Member Posts: 25
    edited April 2020

    I hate to recommend another drug, but I believe that also taking Effexor helps relieve many Tamoxifen side effects. Also, the original sleepless nights sound like anxiety related and Effexor was a life saver for me with anxiety. Hope you feel better!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited April 2020

    I asked my med onc whether prior side effects with hormonal meds would be predictive of my side effects with tamoxifen. She said no, and for me she was right. I never had much trouble with meds before, but the tamoxifen was practically sedating for me (among other side effects, but that was the only one that didn't go away either on its own or with some pharmaceutical help).

    I tried a lot of the ideas suggested by women here - different times of day, split dose, smaller dose, different generic brand. All of those have been successful for others and are things you can try if you have uncomfortable side effects. None of them helped with the sedation. So I tried a different hormonal drug in the same class of drugs as tamoxifen and - voila - it was fine!

    Basically I agree with the advice here not to borrow trouble. For some women, it is like a sugar pill. For others, it has side effects that can be made to go away with time/drugs/exercise/diet/etc. For others, it has side effects that don't go away and are annoying but bearable. The overwhelming likelihood is that you'll be one of those. For some, like me, it has side effects that aren't bearable, and for us there are other drugs we can try.

    The benefit of these drugs for preventing metastatic recurrence is very real and it is worth the risk and angst of trying. If your anxiety is already so high over beginning, I agree that it's great to see that as its own symptom. Everything about breast cancer is anxiety producing, and it makes sense that a lot of that anxiety would get hyper focused on things like tamoxifen, which looks like it's a bit more in our control.

    Lots of cancer centers have psychiatrists attached because they realize that there are real mental and emotional impacts - both drug-related and not. I strongly encourage you to take advantage of this extra support.

  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 77
    edited April 2020

    gb2115,

    I felt a little spacey the first week, but now I feel great. My GP said it still isn’t fully kicked in so I’m glad about that. I was a wreck (I think finally dealing with everything plus Corona, Tamoxifen, etc.). I wished I started it earlier. Effexor is one of the good ones to take with Tamoxifen. I haven’t been on an antidepressant in years (which I didn’t like), but it is needed and apparently will help with hot flashes as a bonus. And I’m less hungry😄. I didn’t want to add another drug, but it’s been a game changer for me.

    I take all my medication with lunch including vitamins. I take melatonin at night. My sleep is good. But, believe me, I was a wreck before

  • Mareny109
    Mareny109 Member Posts: 34
    edited April 2020

    Thank you everyone! All good advice! Hmm. Every other day might be an option. Good to know. Without having the insurance and being unemployed right now ( I was able to file unemployment- but have yet to see anything one way or another.) I'm afraid of causing a problem I can't afford to get seen for. A psychiatrist would be ok with me, but I'm going to have to wait on that. All I have right now is my sense of humor. Maybe I can check into Effexor though. Hopefully I'll hear something in a month about some financial help. For sure I'm praying every day for Corona to take a hike.

  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2020

    I do know a lot of MO prescribe Effexor routinely for SE from hormonal treatment and it may help. I do not know where you live but a lot of states are opening up their insurance and it is usually on a sliding income scale. I have really good coverage I got after I lost my job at a cost less than I was paying through my employer plan anyway. I have been happy with it since I got it with no issues paying claims either. You may want to check into that as well so you can get covered.

  • Kay7751
    Kay7751 Member Posts: 9
    edited April 2020

    I use Indole3Carbinol. It’s a natural estrogen metabolizer. Works great 200 mg per day. No side effects.


  • ejcopeland1979
    ejcopeland1979 Member Posts: 2
    edited May 2020

    the Effexor works wonders but beware of coming off it after it being in your system for a while. My MO just took me off my monthly Zoladex shot so I stopped taking the Effexor (since the main side effects were hot flashes) and I got instant Vertigo! I have been miserable for the past 4 days.

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2020

    ejcopeland1979, we welcome you warmly to the community and appreciate you sharing your experience. We're really sorry you've been so miserable for the past days. Did you taper off of the Effexor?

  • BCat40
    BCat40 Member Posts: 241
    edited May 2020

    You can't stop Effexor cold turkey. :( It is definitely a drug that needs to be properly tapered or you will get bad withdrawal effects.

  • illimae
    illimae Member Posts: 5,710
    edited May 2020

    I had hot flashes for about the first year but now I have no side effects. The rage only lasted a couple months but it was alarming, my poor hubs dealt with a lot during that time.

    image

  • WC3
    WC3 Member Posts: 1,540
    edited May 2020

    Hi Mareny109:

    Have you ever seen a sleep specialist? If not, it might be worth your while.

    I find that the tamoxifen can make it more difficult for me to fall asleep due to hot flashes but that can be remedied if I can cool my bedroom. It has not disrupted my sleep otherwise and I have not had night sweats.

    The tamoxifen did cause some mood changes and emotional turmoil for me for the first few weeks but I'm doing much better now. I'm typically a very even keeled person though and do not get upset easily so my tamoxifen induced emotional upset was probably not as noticeable to others as it was to me.

    While tamoxifen blocks estrogen in some parts of the body, in other parts of the body it is estrogenic. With my fake breasts, lack of functioning ovaries and daily tamoxifen, people seem to regard me as more feminine than they did before my cancer dx.

  • Mareny109
    Mareny109 Member Posts: 34
    edited June 2020

    Thanks WC3. I haven't been on in awhile. I haven't tried a sleep specialist as I have no insurance or money.

  • macb04
    macb04 Member Posts: 1,433
    edited July 2020

    J Psychopharmacol

    . 2019 Feb;33(2):177-184.
    doi: 10.1177/0269881118822167. Epub 2019 Feb 11.


    Tamoxifen for Bipolar Disorder: Systematic Review and Meta-Analysis

    Tamoxifen for Bipolar Disorder: Systematic Review and Meta-Analysis


    Jorge Palacios 1, Ayşegül Yildiz 2, Allan H Young 1, Matthew J Taylor 1 3


    Affiliations expand
    PMID: 30741085
    DOI: 10.1177/0269881118822167

    Full-text linksCite

    Abstract
    Background: Tamoxifen is an oral medication that has been proposed as a potential treatment for bipolar disorder. Tamoxifen acts to inhibit the intracellular action of protein kinase C, which is also an action of well-established treatments such as lithium and valproate. Here we aimed to identify randomised controlled trials (RCTs) of tamoxifen in the treatment of bipolar disorder and synthesise their results using meta-analysis.


    Methods: RCTs were identified by searching of electronic databases and from discussion with experts in the field. Data were extracted, and meta-analyses performed in R.
    Results: Five placebo-controlled RCTs of tamoxifen in the treatment of acute mania were identified. There were no trials in the treatment of episodes of bipolar depression, or for relapse prevention. The studies of mania treatment were of between three and six weeks duration. Tamoxifen was studied either as monotherapy (two trials) or as augmentation of lithium or valproate (three trials). Change in mania scale scores favoured tamoxifen over placebo: SMD -2.14 (95% CI -3.39 to -0.89; 4 trials), as did endpoint mania scale scores SMD 1.23 (95% CI 0.60-1.87; 5 trials). Response rates were also higher: RR 4.35 (1.99-9.50; 4 trials). Acceptability was similar to placebo: RR 1.03 (0.94-1.13; 5 trials).


    Conclusions: Tamoxifen appears to be a promising potential treatment for episodes of mania. Future studies could investigate its effects as an adjunct to dopamine antagonists for improved anti-manic efficacy, and establish its longer term effects on mood, particularly depression and relapse.



    https://pubmed.ncbi.nlm.nih.gov/30741085/
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    I have said this before, look at some of my old tamoxifen postings if you want tons of research links for what I will say.

    Tamoxifen causes Rapid Tryptophan Depletion. This is a KNOWN FACT/SIDE EFFECT. They actually use Tamoxifen as a Treatment for Bipolar Mania in Research Studies.

    Why does this matter? Because Tryptophan converts to Serotonin.

    Then Serotonin converts to Melatonin.

    Now you get WHY YOU CAN NOT SLEEP???

    Also get WHY YOU HAVE INSANE MOOD SWINGS??

    Interesting how NOT EVEN ONE OF YOUR DOCTORS MENTIONED THIS LITTLE FACTOID ABOUT TAMOXIFEN ???

    Instead You Were Somehow at Fault for making up Side Effects they had NEVER HEARD OF ???

    ———————————————————————————————————————————————-

    First, brain tryptophan is converted to 5-hydroxytryptophan by the tryptophanhydroxylase enzyme (the rate-limiting step of serotonin synthesis). Second, 5-hydroxytryptophan is converted to serotonin by the aromatic amino acid decarboxylase enzyme.Mar 23, 2009imagehttps://www.ncbi.nlm.nih.gov › pmc

    L-Tryptophan: Basic Metabolic Functions, Behavioral Research and Therapeutic Indications - NCBI

    —————————————————————————————————————————————————

    Melatonin: Synthesis, Secretion and ReceptorsThe precursor to melatonin is serotonin, a neurotransmitter that itself is derived from the amino acid tryptophan. Within the pineal gland, serotonin is acetylated and then methylated to yield melatonin.imagewww.vivo.colostate.edu › otherendo

    The Pineal Gland and Melatonin - vivo.colostate.edu

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