Tamoxifen is making me crazy

runner4life

After recently switching from 10mg to 20mg of Tamoxifen, I am experiencing some pretty severe mood swings.  I will be fine one day and then the next day I will be out of control.  Things that were mildly annoying before are now making me really mad and I don't seem to be able to stop myself.  It doesn't help that I am not sleeping well now either. 

My doctor told me that these are the side effects of Tamoxifen and they usually get better after two to three months.  She told me to excercise but I do that almost everyday already.   I took some Benadryl last night and got a good night sleep but I am not sure what to do about the emotional issues.  Any suggestions? 

lexislove

Your onc is right. It took me a couple of months to "settle down". I was not able to sleep as well and I finally gave in and started a low dose of Effexor at the end of Janurary.

Now...I'm more relaxed, not snappy with my 3 year old, no more mood swings and my sleep is back. I only take 75mg a day, but for now it is helping things. I really did not want to take an antidepressant...but I could not suffer any longer with my moods and lack of sleep. It was an endless cycle..bad mood..no sleep..bader mood..no sleep...crying..no sleep..Well you get it.

Good luck!

priz47

Is effexor the only antidepressant to take? I have  heard horror stories of people trying to get off of it and that scares me! I also am tired of constantly being mad, not sleeping, crying, etc. If taking something will really make me feel better, then I am all for it! I see my onc on 4/21 so I hope to ask then.

D

Member_of_the_Club

I was on effexor for a year and it really helped me a lot.  I went off under the care of my doctor and that went very smoothly.  The withdrawal can be rough if you don't do it right, but if you work with your doctor, its no problem.

sunandsandgirl

Runner4life

Hi!   I started taking Tamoxifen about 6 weeks ago.  Things seem to be settling down for me.  I am a runner and lift weights.  I have always exercised at least 4 times a week for years actually decades.  I am still trying to recover from my bilateral mastectomy and SGAP repair, but at least I can run again.  I went to a Yoga class about 3 weeks ago because I was so tight from inactivity.  The one result I noticed the most from the Yoga was that it really helped me to relax and exercise muscles that have been neglected.   I did not feel as agitated, and my mood swings have begun to even out.  My family even noticed a big difference.  Running has always relaxed me and given me a natural positive high, but since I have been  post op it has been such a physical  challenge it did not give me the relaxation.  The yoga has been so soothing for me and given me time to pause.  I follow it up with a run, and I feel fantastic.  Might give it a try since you like to exercise.  

 Hope the SE will settle down for you!

Sunandsandgirl 

Anonymous

runner4life - I agree with sunandsandgirl about the exercise.  I started tamoxifen before I was really back at my usual 6 days/week of aerobics and pilates classes.  I felt like crying all the time, plus had some significant (for me, at least) joint pain issues.  Those symptoms have calmed down a lot in the past couple of weeks, and I'll bet exercise has contributed to that.  My onc really stressed that exercise was important for my type of bc, too.  The only thing that hasn't improved much are my night sweats and waking up.  I haven't slept through the night since my diagnosis - first too much anxiety and now tamoxifen! 

Hang in there!

Valerie

lexislove

Effexor ALSO helps with hot flashes associated with meopause so it is one of the Anti depressants that is rountinely perscribed for BC woman.

Like I mentioned I take a low dose 75 mg and it helps me SO much. I wish I took it sooner than suffer. when it comes to weaning off....I will tackle that when it happens. Right now I am enjoying NOT being moody and emotional with all this BC crap.It is helping me "move on".

lexislove

val..

I was the same NO sleep since I was diagnosed. I found a I was STILL not sleeping 1 year later! I was going crazy. At first it was the whole anxiety with being diagnosed, then when treatment ended, I was not able to just "shut" my brain off. My mind was racing constantly. I found I was reading before bed to help, BUT it was all cancer related! So I stopped that. I bought some Vogue or celebrity trash mags instead..lol

runner4life

These are great suggestions.

sunandsand-  my onc suggested more yoga and I know what you are saying is true.  I have been in full on marathon training mode (next race was supposed to be in 3 weeks).  However my body is saying I need more calm and I need to listen. 

lexislove- I made a note of the celebrity trash mags before bed instead of cancer books:)  are you taking anything to help you sleep?  The Benadryl didn't work anyway but I am curious about why I should not be taking it while on the Tamoxifen.

Val61- I hear you on the joint pain.  I am feeling it mainly in my hips.  So has that started to go away too? 

CharlieG651

Just reading some of the entries in this section is making me feel a bit better.  What is strange is I have been taking Tamoxifen for about 3 months and it just really got bad this past month.  I am sleeping horrible, my skin is dry as a desert, I have hot flashes on and off all day and night and am so sad that I cry at the drop of a hat.  Some mornings I just look in the mirror and start to cry.  I need to snap out of this - I feel like a different person.  I finally caved in and called the onc and they have prescribed a low dose of gabapentin and they tell me it will get better within 6 months.  I'm sorry others are going through similar circumstances but happy I'm not losing my mind.  I can't help but wonder if this is worth it since my bc was diagnosed so very early.  I have been so tempted to stop taking any and all drugs.

lexislove

runner4life..

It's funny we are talking about sleep because the last 2 weeks have been rough. I don't fall asleep till 1 or 2 am and toss and turn. I have a perscription for Zoplicone these little blue pills. I plan on getting them tomorrow. They work wonders, I only use them when I'm desperate.My father who is 57, takes half a pill an hour b4 bed to help him stay asleep because he is a heavy teeth grinder and would wake up because of it.He has used it for 3 years to help.

lexislove

runner...

I have heard from other woman that Benydryl interacts with Tamoxiffens effectivness. I have never tried it personally. All meds that I have taken to reduce anxiety and help with sleep I have made sure they are ok as I am on tamoxifen. Onc says everything is fine.

checkum

and I thought it was me - LOL

I have been having the same issues - no sleep, weepy (I call it my moments) .... my doc gave me a script for clomazipam (SP?)... anyway, he let me try them for a week - they seem to help, I have to pic up another scrpit of them tomorrow. 

lexislove

chekum,

I think zoplicone and clomazipam(sp?)..lol is the same thing. One is the generic name. I hope they help you..keep us updated on your ZZZZZZZZZZz' s!

IllinoisNancy

I've been on Tamoxifen for 2 1/2 years and take Effexor daily.  I don't think I could funtion without it.  I'm a very high strung person.  I also need a Xanax to calm me down for sleep.   It works so my doctors are all for it.  I'm looking forward to the day that I don't need any meds.

Good luck,

Nancy

Kleenex

I asked my oncologist about Benadryl and Tamoxifen, and she said it's not a problem to take them together. So if someone has an actual study or something that contradicts that, I'd love to know.

I've been taking Tamoxifen since Dec. 1, 2008, and some of the side effects that were initially annoying have slacked off - my skin is less dry, I'm having fewer vaginal issues, my eyes don't seem as dry as they were, etc. I assume my body is adjusting, and I hope that's a sign of adaptability rather than that the Tamoxifen isn't working. My period is totally wacky, though - last two cycles were 41 and then 46 days. Woohoo! I have annoying pelvic congestion a week or two before my period, and when my period finally hits, it's impressive. But at this rate, perhaps I'll get away with only 7 this year, which wouldn't be too bad...

What does effexor do for those of you who take it? Do you feel "even" and "not sad," or do you feel energetic or positive? I've heard some people say they need sleep meds with it. I'd love something that would give me a nice kick in the rear - like if meth were legal and didn't come with the dangerous paranoid violence side effects...

peeps1111

Runner:

I thought I read a recent study that a low dose of tamoxifen was just as effective as 20 mgs.  I think they use 10 mgs. in Europe.  I am supposed to be on 20 but I was miserable on just the 10, practically suicidal, crying all the time, no way to live.  So I went off it for a week.  Ran into a neighbor the other night though who told me that my neighbor who died a couple of years ago went off her tamoxifen for the very same reason as me, her emotions are out of control so I'm back on it, but I'm sticking to the 10 mgs. for the time being, along with my alternative supplement DIM.

Hope you feel better.

Peeps

Peppy

Benedryl and Tamoxifen should NOT be taken together. They both use the same liver enzyme and the Benedryl can casue the Tamoxifen to be ineffective.... 

If you must, and I know if you're suffering theres no real choice, take benedry RARELY and at the smallest does you can.

 Bendryl and Tamoxifen should not be taken together. I will try to post a link, but I've read a lot about the things not to be taken with Tamoxifen, and Benedryl is way up on the list.... 

 BEST to you....

Peppy

Here's a pretty comprehensive list of things not to take with Tamoxifen.

This is the html version of the file http://www.medicine.iupui.edu/clinpharm/COBRA/TamoxifenGuide.pdf.

References
1. Borges S et al. "Quantitative effect of CYP2D6 genotype and
inhibitors on tamoxifen metabolism: Implication for optimization of
breast cancer treatment." Clin Phamacol Ther. 2006 Jul;80(1):61-74.
2. Jin Y et al. "CYP2D6 genotype, antidepressant use, and ta-
moxifen metabolism during adjuvant breast cancer treatment." J Natl
Cancer Inst. 2005 Jan 5;97(1):30-9.
3. Goetz MP et al. "The impact of cytochrome P450 2D6 metabolism
in women receiving adjuvant tamoxifen." Breast Cancer Res Treat.
2007 Jan;101(1):113-21.
4. Gonzalez-Santiago S et al. "CYP2D6*4 polymorphism as blood
predictive biomarker of breast cancer relapse in patients receiving
adjuvant tamoxifen." ASCO Abstract 2007.
Website: WWW.Drug-Interactions.Com
The information presented on this card is intended as
general health information and as an educational tool. It
is not intended as medical advice. Only a physician,
pharmacist or other health care professional should ad-
vise a patient on the use of the medications prescribed.
©January 2008. Consortium on Breast Cancer Pharmacogenomics

Strong CYP2D6 Inhibitors
Generic Names
Brand Names
Fluoxetine
Prozac®
Paroxetine
Paxil®
Qunidine
Cardioquin®
Bupropion
Wellbutrin®

Moderate CYP2D6 Inhibitors
Generic Names
Brand Names
Duloxetine
Cymbalta®
Sertraline
Zoloft®
Diphenhydramine
Benadryl®
Thioridazine
Mellaril®
Amiodarone
Cordarone®
Trazodone
Cimetidine
Tagamet®

SSRIs and SNRIs that are not inhibitors
Generic Names
Brand Names
Venlavaxine
Effexor®
Citalopram
Celexa®
Escitalopram
Lexapro®

Drugs that inhibit CYP2D6 that
should be avoided while taking
tamoxifen
Drug Information - Tamoxifen citrate
(Nolvadex®), originally manufactured by
AstraZeneca (also available as a generic)
Tamoxifen is a medicine that is taken as a pill by mouth.
It is called a selective estrogen receptor modulator
(SERM) because it acts as a weak estrogen in some tis-
sues like bone but as a strong antagonist of the action of
estrogen in the breast. It has been FDA approved for the
treatment of both early and advanced estrogen receptor
positive breast cancer in pre- and post-menopausal
women and in men. Tamoxifen is also FDA approved
for the prevention of breast cancer in women that are at
high risk for breast cancer.
Dosing Information:
•
Metastatic breast cancer: 20 to 40 mg daily
•
Adjuvant treatment for breast cancer: 20 to 40 mg
daily for 5 years
•
Intraductal carcinoma in situ of breast, following
breast surgery and radiation, to reduce risk of invasive
disease: 20 mg daily for 5 years
•
Breast cancer, high-risk; prophylaxis: 20 mg daily
for 5 years
Disease Overview - Breast Cancer
Breast cancer is the most common and lethal cancer in
women. The National Cancer Institute estimates that
in 2007, 178,840 new cases of breast cancer will occur,
and that 40,460 women will die as a result of the dis-
ease. The lifetime risk of breast cancer for women in
the United States is approximately 1 in 8. Treatment
of breast cancer now involves a number of possible
drugs that are used after the radiation and chemother-
apy that are utilized immediately after surgical re-
moval of the tumor. In women who have estrogen and/
or progesterone receptor positive tumors that include
anti-estrogen therapies including tamoxifen, which is
an antagonist of the action of estrogen in the breast,
and the aromatase inhibitor class of drugs, which
lower the estrogen circulating in the body by blocking
the synthesis of estrogen by aromatase from andro-
gens in fat tissue. The aromatase inhibitors do not
work in women before the menopause, in whom most
estrogen is made in the ovaries, but tamoxifen is effec-
tive in both pre-and post-menopausal women.
According to the most recent National Cancer Com-
prehensive Network breast cancer clinical practice
guidelines, risk reduction therapy with tamoxifen,
either alone or in conjunction with surgery or radio-
therapy, is recommended for premenopausal and post-
menopausal patients with estrogen receptor positive
disease to prevent breast cancer recurrence. The NIH
Breast Cancer Prevention Trial showed that tamoxifen
given for 5 years reduces the risk of invasive breast
cancer by approximately 50% after 5 years of ta-
moxifen therapy.
The product labeling contains a black box warning for
serious and life-threatening events which include uter-
ine malignancies, stroke and pulmonary embolism in
patient with Ductal Carcinoma in Situ (DCIS) and
women at high risk for breast cancer. Data from the
largest trials conducted indicate that these events oc-
cur in 1 in every thousand women over 5 years of
treatment.
Drug interactions with tamoxifen are important be-
cause the drug is extensively converted to active me-
tabolites (breakdown products) in humans and these
metabolites may be responsible for many of the effects
of the drug. Since the main active metabolite is made
by an enzyme in the liver called cytochrome P450
2D6 (CYP2D6), drugs that powerfully block the activ-
ity of the enzyme may reduce the effects of tamoxifen.
Tamoxifen Metabolism Pathway
We have listed here drugs that are frequently co-
prescribed with tamoxifen that are powerful inhibitors of
the CYP2D6 enzyme that reduce the concentrations of
active metabolites substantially (Strong CYP2D6 Inhibi-
tors), and drugs that are less powerful, but still signifi-
cant inhibitors (Moderate CYP2D6 Inhibitors). Since
antidepressants are so frequently co-prescribed with
tamoxifen (up to 30% of patient in the US) we have spe-
cifically listed all the SSRI and SNRI antidepressants
that do not interfere with tamoxifen metabolism as well
as those that do.

LeggyJ

My doctor, has me on 10mg of Celexa, and I'm really happy, with it!  In fact, a man I didn't even know, told me yesterday, that I looked really happy.  I thought for a second, and said "You know, I am happy".   

rosesinwinter

Peppy-

Thanks so much for these references and accompanying lists.  I will take this to my family M.D. for reference because she has several breast cancer patients in her practice.  My oncologist only uses Effexor for her patients - we learned that at our Survivor's Orientation last year. This ia a great addition to my breast cancer file!

runner4life

Thought I would give a 6 month update as to how things turned out for me on Tamoxifen. 

The side effects did tone down after about two months.  Then they returned worse than ever in the beginning of the third month (June).  I would be yelling at my husband one minute and crying in the corner the next.  I had no patience with anyone (including my toddler) this whole summer which caused some embarassing interactions for me.  My memory went out the window and by months 5 and 6 I was pretty much searching for my wallet and car keys about a half hour every day.  Generally speaking, I simply became more dull;  I was unable to handle more than a couple of tasks at a time and just couldn't remember the other things that needed done in a given day unless I wrote several lists throughout the day.  After living with me for 6 months like this, my marriage had shifted to a state of ongoing defensiveness and anger partly as a result of my "edgyness" and partly because he had adapted to this new person and was fighting back.

 I stopped taking it a week ago and am already feeling better... more like me again.  I called the doctor and told them yesterday.  My plan (with my doctor's blessing) is to stay off it for a month and get my head back together and then go on antidepressents and see what that is like.  Finally, I will try tamox again.  This time, I am not going to say on it if the side effects are as bad.  I don't know how long I will be on this earth... maybe a year?  maybe 70 years?  I do know that I want to enjoy everyday being as healthy and as happy as I can be both mentally and physically. 

HelenaJ

Runner4life - so sad to read your post - I had a break from tamoxifen after 2.5 months and am now back on it (7 months) and my depression has disappeared.  I still get gnarly and a little anxious but my quality of life is very much improved, and this is without taking the Effexor my Onc wrote out for me.  I hope the antidepressants and "holiday" off tam work for you like it did for me.

big hugs

Helena

(Ps. I'm a runner too)

runner4life

Helena-  I can't believe I forgot to mention the anxiety- that is a big part of it too!  I hope my moods smooth out and that I can return to it as you have done.  I am so glad it is working out for you and that gives me hope.  I want to do all I can to not go through cancer again.  So many hard decisions.

sunandsandgirl

Runner4Life,

I felt like you were describing my emotions exactly.  I have been on Tamoxifen since February. I started out ok with just a few hot flashes, but these last few weeks have been tough.  My running and exercise seemed to keep me in check for a few months.  The running still helps, but it does not prevent my mood swings like it did.   I have felt so sad and or angry.  The most simple and ridiculous things will make me cry.  I never cried before.  I think in the last 2 weeks I have cried for the 46 years I did not.  Keep us posted if you start back on the Tamoixfen.  I am still trying to hold on.  Good luck to you.  I hope the break will bring back the smiles and laughter.

sunandsandgirl 

EvaPerone

I wasn't sure if my inability to stay asleep, night sweats, crying jags and fogginess was caused by chemo or the tamoxifen - finished chemo mid June and started tamox in Aug. My periods ended during chemo, no sign since (I/m 46), but doubt I'll ever be able to have sex again - feels like the dryness just closed me up.

Curious about joint pain mentioned as I still have pain in hips, ankles and knees. Caused by taxol? Or tamoxifen? The weight gain during mastectomy and chemo is not helping with the depression. Back to daily walking, biking but slowed down by expansion discomfort.

Really interested in hearing how people do with effexor, though I hate the thought of another drug.

I'm taking Vit B,D, Calcium and fish oil (Trader J's brand) if anyone has other ideas.

Glad I logged back on, didnt think I needed it post-chemo, ha! 

runner4life

sunandsandgirl-  I wish you were not going through this too.  I used running to get through it all (I trained for a marathon through chemo) and have run more this summer than ever only to find at this point that it just isn't helping me control my emotions anymore (just like you).  Now I am about 4 weeks off Tamox and I am pretty "normal" again.  This week things even shifted with my husband.  I asked him if he thought it was easier living with me off Tamox because I am finding it easier.  This relief I am feeling, however, is bittersweet.  On one hand, I don't want to walk around all the time thinking about how I hate everything and everyone (which is how that drug makes me feel) and on the other hand, I don't want to drag my family through breast cancer again.

EvaPerone-  Personally, I had a really severe reaction to the Taxol (pain so bad I couldn't get out of bed for 3-5 days after treatment) and it subsided within weeks of my last chemo treatment. Tamoxifen gives me joint pain in my hips for sure and come to mention it, my hips stopped hurting since I quit.  I am also pretty sore in my knees and ankles and even that has toned down since I quit.  Are you taking a multi vitamin too? 

I am getting comfortable off Tamox.  Not sure how I am going to get the strength to go back on it.   

sunandsandgirl

runner4life

Thanks!  The last few days have been better.  My husband had an interesting thought.  He thinks some of my anger is part of the healing process after the surgery and reconstruction.  I was so focused on healing and getting better I never grieved about the bc.  Now that I am feeling well from the surgeries I have time to let my mind think about all that has happened.  Somehow that helped me to feel more settled and normal.  The tamoxifen definitely takes all of my emotions to the extremes and the joint pain varies from day to day.  I laughed when you wrote you hated everything and everyone because that is how I have felt.  I have read on this site some women who stopped the tamoxifen started it during a different part of their cycles and did much better.  If you do decide to go back on it maybe this would give you some hope for a better tolerance to it.  

I am so glad you are feeling better.    

FionaF

Hi Everyone,

Thank you so much for sharing all of these experiences!  I too am feeling crazy emotionally, and definite soreness...achy knees and fatigue like symptoms.  I started tam about three weeks ago, after completing chemo and radiation.  I also have shoulder pain....has anyone else experienced that too?  It just feels like an achy-all-over feeling at times.  Definitely improves with rest but I feel like I have a hard time resting due to anxiety as well.

I have effexor that I have not started yet but may indeed do so after reading all of these posts.  Thanks again and I am so glad I logged back in too!!!!

Warmly,  Fiona 

RobinIAH

One of my se's is shoulder pain.  I also experience the fatigue and the achiness all over as you have described.

runner4life

sunandsandgirl-  I think your husband is right.  The thought came to me recently that I am mad at my body for letting me down.  I feel like at a time when I want to be enjoying my son and having babies, it betrayed me and left me with a lot a new heavy baggage that I now have to carry around all the time.  Even off of Tamoxifen, I am still sad, "Normal"  is not the same normal I was before BC and I am definatly grieving that.  I know that is not fair especially after all the positive things my body did in the last year but I am going back and forth all the time between these feelings.  You are so right that Tamoxifen takes my emotions to the extreme.

You are all making me feel better.  I wish nobody had to go through this but hearing how others are handling it is helpful.