muscle twitching and cramps on tamoxifen

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jul965
jul965 Member Posts: 3

Has anyone experienced muscle twitching in addition to muscle cramps on tamoxifen?  I have had annoying twitching, mainly in my calves, for about 9 months.  Have been on tamoxifen for about 14 months.  Also have had muscle cramping in my calves at night off and on, but it is the muscle twitches that drive me crazy -- feels like corn popping in my calves.  Sometimes it is hardly noticeable, but other times quite active.  I have talked to my onc about it and he suggests stopping the tamoxifen for about a month and then transitioning to an AI.  He said it would take at least a month or longer for all the tamoxifen to leave my system.  Would be interested to know if anyone else has had this.  Thanks!

Comments

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited June 2010

    I have been having the same issues as well.  I haven't been on the tamoxifen for a year yet.  It is very frustrating experience.  It will be interesting to see what the oncologist says. I am also very active and attributed the cramping and twitching to the combination of both

  • Marion
    Marion Member Posts: 207
    edited June 2010

    I have had cramps at night too. Cramps like I've never had, very painful. Never had twitching though.

  • keno41
    keno41 Member Posts: 91
    edited June 2010

    I had bad leg cramps at night too. They stopped after about 5 months or so. I tried drinking quinine and that seemed to help, but I usually slept with a heating pad. Now I'm just crazy with night sweats!

  • jul965
    jul965 Member Posts: 3
    edited June 2010

    I drink tonic water too-I am keeping the tonic water industry in business!  I think it helps a bit.  I also have tried eating a banana everyday, but often forget or run out.  I hate being on a medication with such annoying side effects but am glad, I guess, that there is such a med to prevent recurrences.  My onc said that the AI's have their own negative side effects and I have read about many on this board.  Not looking forward to taking those either!  In any case, it is reassuring that someone else has also had the twitching -- it is weird feeling and frustrating when it keeps me from sleeping!  Thanks to all for your answers.

  • mymountain
    mymountain Member Posts: 184
    edited June 2010

    Count me in for the twitching and cramps. I get the twitches in my arms and calfs.  Lately I've been getting the cramps in my shins down to my feet.  You can actually see the muscle tighten under the skin.  Mostly at night  

  • lebrecht
    lebrecht Member Posts: 68
    edited July 2010

    I am now seriously considering Arimidex.  Newer drug and perhaps less of this side effects. Of course then maybe other ones to worry about?

    Anne

  • lebrecht
    lebrecht Member Posts: 68
    edited July 2010

    The Doctor said to start on Temoxifen for about 3 years then will switch me to Arimidex. She says fewer side effects this way.

    ????

    I hope she knows what she is talking about. She also said she NEVER heard about any leg cramps etc.

    Anne

  • Jane_M
    Jane_M Member Posts: 1,549
    edited July 2010

    I get the leg cramps, too.  I have been on Tamox since May.  I did Femara for 10 months and Aromasin for 1 month.  I'll take the Tamox SEs over the AIs any day.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2010

    I have been on Tamoxifen 3 months now and I notice if I try and stretch my legs in the morning in bed before rising... that  I have the beginnings of a leg cramp so I ease off and it seems to ease off.  I can only imagine if I don't how painful that cramp would be.  I didn't realize it was a side affect.

    I am also experiencing plantar fasciitis in my left heel which is the foot/ankle I have mild arthritis in having fractured it a few times in my youth.  It didn't bother me at all, but now suddenly it hurts daily. Is anyone else experiencings heel/foot pain?

     MzJoy

  • angelar
    angelar Member Posts: 8
    edited July 2010

    I've been on tamoxifen 2years now and about 6 months ago I started have severe leg cramps in both legs almost every night. I found on line that a vitamin d deficiency can cause cramping and my obgyn said that tamoxifen can cause a loss of calcium, d and c. I started taking 1000iu of d daily and I haven't had a cramp since.

  • sam408
    sam408 Member Posts: 1,099
    edited July 2010

    Sounds like you are all in communication with your doctors about the cramps, but if not make sure you have them checked out. After 18 months on tamoxifen I started experiencing what I call "charlie horses" in one leg and would just work them out & go on. They happened a lot at night and then one night they got considerably worse. When I got out of bed the next morning, I experienced a pulmonary embolism caused by blood clots in that leg. It was a shock because blood clots are usually accompanied by swelling & I had no swelling. The blood clots were caused by the tamoxifen and I was immediately taken off it. Had to take warfarin for a year as a preventative measure against further clots, but had no more problems.

    I did not know that blood clots were a side effect of tamoxifen until it happened to me. Couldn't believe that the medication I was taking to ward off cancer nearly killed me. Anyway, long story short, just be very careful about any issues with your legs while on tamoxifen.

  • WillowCreekJade
    WillowCreekJade Member Posts: 6
    edited March 2011

    I've been on Tamoxifen for almost 2 years.  I've had aching muscles the whole time.  Just recently I started feeling muscle twitches or muscle quivering in my arms and legs.  I was starting to worry if it was something else serious besides Tamoxifen.  So, I'm somewhat relieved to see that it is most likely the Tamoxifen.  Previously I was running 2mi/day and stretching and that relieved most of my muscle aches and pains.  Got of my exercise routine and now I have the muscle aches and the quivering again.

  • Kelltic
    Kelltic Member Posts: 1
    edited October 2011

    I started Tom. in May. I have had the worst leg cramps in my life!! Mostly at night but I am waking up at least 5 times a night with the cramps. Now I'm also starting to get the muscle twitching, hip pain, lower back pain, depression...ugh. I go the the dr. tomorrow to get checked out. I know there are other meds to take but from what I've been reading their side effects can be worse. I can't imagine. 

  • bettydaviseyez
    bettydaviseyez Member Posts: 43
    edited October 2011

    I have leg cramps.  Especially in my calves as well as my feet.  I also have pain, just dull pain  I just lay there and wish it would go away.  The onco said it is a side affect of tamox, but it is rare, only happens in 3% of women and starts within 3 weeks.  I have been on tamoxofion for 3 months, and mine just started 3 weeks ago. So, he did nothing.  Of course, what can he do? 

  • knowledgeforpower
    knowledgeforpower Member Posts: 184
    edited October 2011

    Count me in too for muscle twitching and cramps in my legs.  I read posts on the subjects where women were suggesting putting a bar of soap under the sheets at the foot of the bed.  I thought what the heck I'll try it.  And, sure enough the frequency and intensity of the cramps decreased.  The soap did not do anything for the twitching, but the twitching  less disruptiveto my sleep than the cramps.

  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited October 2011

    Me too!! Cramps in feet and calves at night only it seems! 

    I will mention it to my Onc later this month, maybe i will try the soap theory Laughing

    Last thing I need is a blood clot! Only just got rid of my cellulitis! Frown 

  • sharneu1
    sharneu1 Member Posts: 21
    edited October 2011

    I've been on tamox for 3 years now and have been putting up with cramping muscles in calves  and feet,almost constant eyelid twitching, insomnia and weight gain that seems impossible to loose.  I've tried the soap trick with some relief for the leg cramps excercise for the weight gain but the rest I just try to ignor....2 more years...and counting.

  • cport115
    cport115 Member Posts: 4
    edited January 2014

    I am so glad I decided to google muscle spasms and tamoxifen!!!!   I have been on tamoxifen for 4 1/2 years, maybe soon to be off but will see in June.  My mother passed less than a year ago from ALS, I was freaking out thinking my spasms are ALS, but now feeling a bit better seeing other people get muscle spasms.  Thank you so much for easing my fears!!!!!!

  • Twinmar
    Twinmar Member Posts: 35
    edited January 2014

    I was on Tamoxifen for one year.   The first five months I had no side effects and even lost 5 pounds.   Then my calf muscles began to twitch - it felt like popcorn in my legs.  I also could barely stand in the morning when I got out of bed - my ankles and back were very stiff.   Then my mood began to change - I became depressed.   My gums started to bleed; I had thinning hair and constant shivers (well constant when I wasn't having hot flashes).   I went to a neurologist who gave me a total work up - blood work and muscle tests.   All tests were perfectly normal.   After meeting with my oncologist, she suggested I go off the Tamoxifen since it could be the cause of all my side effects.   I have now been off since the end of October.   My back and ankles are better; my gums no longer bleed and the chills have diminished..however, my calf muscles continue to move after I use my legs - maybe not as much but I still think the Tamoxifen is in my system.   Hot flashes continue.  I'm 62 years old - my diagnosis was DCIS, low nuclear grade, highly ER/PR plus.  I hope I didn't make a mistake going off the drug but I just couldn't live like that.  Knowing the neurologist thinks I'm okay, makes it easier to accept the twitching muscles.  I'll be fine until I have to go for my 6 month mammo and then will get all freaked out again.  No breast cancer on my side of the family.  I have a twin sister who is perfectly healthy.

  • MarilynKNewman
    MarilynKNewman Member Posts: 1
    edited March 2015

    Thank you for posting. I have been on Tamoxifen for three years. I could handle the hot flashes and found if I avoid soy products I have fewer and less intense hot flashes. I started noticing twitches in September 2014. The twitches got so intense you could visibly see my limbs jump. I had multiple blood tests, EEG, MRI, and other testing by a neurologist. No idea what was causing the twitches. The tech who did the EEG said she remembered a connection between Tamoxifen and twitches. I googled Tamoxifen and twitches and got this . I called my oncologist and was told to stop taking Tamoxifen immediately.  That was several weeks ago. I still get twitches ... maybe not as intense or as frequent but still everyday. How long after stopping Tamoxifen did your twitches stop? 

  • 1openheart
    1openheart Member Posts: 765
    edited January 2016

    Are you still having the twitches? Mine come and go and feel like I have pop rock candy in my calves. I have terrible calf and foot cramps at night and now I am having dull aches and heaviness in both legs at night. I have been on Tamoxifen for over 4 years. I'm wondering if I can make it to 5!

  • Mshea
    Mshea Member Posts: 3
    edited March 2016

    I am just starting on tamoxifen because I was on an AI for the past two years and am now in severe osteoporosis in my spine and hip at age 45! I was also taking Fosamax for my bones but it didn't work. I am starting to get the muscle cramps and popping feeling however the AI is very similar and extreme fatigue was much worse. I wish you well on your desicion! Good luck!

  • Smcdzn
    Smcdzn Member Posts: 5
    edited April 2016

    I quit Tamoxiphen 2.5 weeks ago for a break. My feet are cramping more now and my eye stated twitching. Body pain meanders & changes day to say. I don't think I'm going to go back on it

  • ssmfcco
    ssmfcco Member Posts: 2
    edited April 2016
    1. I was told to take B6 100 mg/day or B complex AND 800-1000 mg/day of Folic Acid for the leg cramps, and NOT to drink tonic water because the quinine counteracts the Tamoxifen. Has anyone else ever been advised to only drink one cup per day of tonic water?
  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    Welcome to the community ssmfcco. We are sorry that you are having problems but glad that you reached out here. Perhaps you can tell us a bit more about your cancer situation so we can provide more assistance. Stay connected here and again welcome. The Mods

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