Tamoxifen side effects and long Term use

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  • AmyfromMI
    AmyfromMI Member Posts: 241
    edited December 2013


    yarnhoarder,


    Muscle cramps are a SE of tamoxifen. I find that taking 400mg of magnesium helps me. I tried tonic water, which also helps, and couldn't stand the taste. So magnesium it is!

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  • Mini1
    Mini1 Member Posts: 1,836
    edited December 2013


    I had muscle cramps before my starting Tamox and after. I got relief when I took magnesium on a regular basis, but now that I'm on Tamox, they are back. It may just be a coincidence, who knows? My Rx for Vitamin D was given to me after my blood work showed my levels alarmingly low. Also, I did have a bone scan which showed only my osteoporosis. I have some bone pain in my back, but nothing compared to the pain I experienced on the 2 AI's they prescribed for me at first. Every joint in my body hurt when I took them. I had so many bad side effects, they have it down on my chart as allergens. It was horrendous. I wouldn't take them again under any circumstance.


    I read somewhere that the average women stops taking Tamox after 2 years. If that's accurate, than the studies showing the rate of recurrence after 5 years are seriously skewed. I am going to the gyno doc next month and will be interested in the results of my pap. I noticed SE's in that area after just a few days on the Tamox. It has me concerned about the endometrial SE's.


    I still look at the numbers and see that with my Onco score, my chances of recurrence by taking Tamox are 7%. Without it a 11% relative risk. Put that into real numbers and the chances are almost as good w/o as with. Cancer Math puts it at an add'l 7 months. I'm not sure which I fear the most, the disease or the cure. Sigh.

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  • sherridl
    sherridl Member Posts: 42
    edited December 2013


    The only thing that helped my cramps with Tamo was MagOx - 400 milligrams of magnesium. If I didn't take that daily or tried other brands, I would cramp all night. Worked great for me - hope it helps some of you with the cramps. I know how awful those are!

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  • Headeast
    Headeast Member Posts: 619
    edited December 2013


    i met a lady yesterday who is free of cancer for 17 years. I asked her about Tamoxifen and she told me she took it for 5 years after her BMX and she didn't have any side effects.


    Inhope it will be the same with me. I will start on 12/25

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  • Mini1
    Mini1 Member Posts: 1,836
    edited December 2013


    It's always a puzzle for me to know if they would have been OK anyway, with or without the Tamox. I'm taking it right now, but I'm still a little uneasy about it even though I've had several women tell me they took it with no problem. Maybe it's because I had such horrid SE's from the AI's I was prescribed last year. Thankfully, the SE's have been minimal so far.

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  • MimiATL
    MimiATL Member Posts: 10
    edited February 2014

    Started Tamoxifen 12-1-13.   First 6 weeks were okay.  Now I find myself waking up multiple times a night with  heavy night sweats and feet/leg cramps. Also noticed some depression (excessive rumination).  I've read that the SEs ebb and flow.  On the positive front, no weight gain.   What a journey.  

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  • mkahle
    mkahle Member Posts: 8
    edited February 2014

    Has anyone had sternum and rib pain after starting Tamoxifen? Also my boobs hurt really bad like being pregnant.  No lumps in breast though. 

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  • sloyd66
    sloyd66 Member Posts: 202
    edited February 2014


    Hi Everyone,

    I took my first Tamoxinfen pill today. I so love when I hear ppl say they had no side effects. Because anything else makes my very nervous taking this drug. I don't pop pills at all. Just started taking vitamin D on a regular about a mouth or so ago. And to take a pill for five yrs just concerns me. I'm told by my MO that I will most likely do fine on it. But when you read other ppl stories it makes you wonder. I'm preparing already for the hot flashes which i get now, just hope it's not worst. Also the leg cramping i hear that alot. But I'm praying i get little to no SE. My rads went very well, was able to still wear my regular bras, even the wire ones. My complexion is coming back just a little over 3weeks since my last treatment. So I've been blessed so far.

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  • Mini1
    Mini1 Member Posts: 1,836
    edited February 2014

    When I was first diagnosed the put me on AI's (Anastrazole and Aromasin) and it was HORRIBLE. Because of this, I was scared to take tamoxifen and I waited for almost a year to start taking it. I went in expecting the worst. I can honestly say that the SE's have been minimal. I have to take it early in the day so not to make my insomnia even worse. I have some bone soreness, but I also have osteoporosis, so the cold weather and osteo may have a bit to do with that. I did read that the soreness of bones occurs most often in the patients that experienced bone pain. 

    I hope you experience few, if any, SE's. Good Luck.

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  • maillotjaune
    maillotjaune Member Posts: 6
    edited July 2014

    Oh my, it never occurred to me that my charley horses and leg cramps in the night could be related to the tamoxifen! I have been on tamox for about 8 months now, and the calf cramps in the middle of the night have been occurring quite regularly for the last 4-5 months.

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited July 2014

    I started getting lots of leg and foot cramps soon after starting tamoxifen, don't know if it's to blame or just coincidental timing, but I read somewhere it can be a sign your magnesium levels are too low, so I started taking magnesium, 500mg once a day and the cramps almost completely stopped. Worth a try!  

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  • Golden01
    Golden01 Member Posts: 916
    edited July 2014

    My MO shared an "old" remedy for leg cramps, he said they used to prescribe quinine but it is not indicated for that any more. He added that you can get quinine in tonic water. I now drink the diet tonic water pretty regularly (without the gin which I miss) and my leg cramps are few and far between. Like others, I find the things like staying hydrated and exercising important too.

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  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2014

    I have leg cramps as well. My doc recommended taking magnesium. It seems to help. Eating a banana before bed has been helpful as well. The potassium I guess. I had no idea that there are 8 different categories of cramps.  I thought a cramp was a cramp. Who knew?

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited July 2014

    Hi there - it never occurred to me either that my legs cramps could be tied to the tamoxifen! I came on the boards today looking for some answers, because I'm getting numbness in my toes. Does anyone else experience that? After I read some of your entries it occurred to me that the pain in my calves might be a side effect. I thought that maybe it was age, or menopause, or the fact that I've really toned down my cardio since my DIEP surgery last summer. 

    I feel like I'm 100 years old. I fall out of bed like my grandmother, and step directly into my softest running shoes because I need the cushioning until my legs start to warm up.  Magnesium sounds good though. Also, I must confess that I've gotten less pro-active about my health. Diet and activity levels are good - but I haven't really addressed the aches and pains. Partly beacause I've wanted a medical break. And partly cus I don't like my MO.  

    Ok - no more excuses, starting tomorrow, I'll take the bull by the horns. 

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  • Mini1
    Mini1 Member Posts: 1,836
    edited July 2014

    It took me awhile to get used to the bone pain with Tamoxifen. I console myself with a tidbit I read not long ago. I wish I had the study to cite. It basically said the study showed that the more intense the bone pain, the better the effectiveness of the Tamox. They say that it helps bone regeneration for those of us with osteoporosis. That would make sense. Growing pains. I have found that the pain has eased some with time. 

    You may also want to check the manufacturer of your Tamox. I take one by Watson. Last month the pharmacy changed and gave me another one. I forget which one. Anyway, after 4 days I had to stop taking it. I hurt, had even worse insomnia, and more cramping. After doing a little research, I found that certain SE's are more common with each brand. I found a pharmacy that has the Watson brand and feel much better.

    Blessings

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  • roby7
    roby7 Member Posts: 55
    edited September 2016

    I am on tamoxifen for 2 years now and I see a lot of you mention the traveling bone pain which makes me worrying about mets. I have pain in shoulder blades hips upper arms upper legs it come and go and it is not severe but makes me worried

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited September 2016

    roby, that was exactly the kind of pain I had from tamoxifen.



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  • roby7
    roby7 Member Posts: 55
    edited September 2016

    Jennie thanks a lot for your reply. My doctor didn't tell me that may be tamoxifen is the reason she sent me to a therapist 😏

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  • Wonderfulmom
    Wonderfulmom Member Posts: 38
    edited January 2018

    I have been on Tamoxifen for over 6 years now. I get the leg cramps, but I figure that it is better than the cancer. New studies show that 10 years is significantly better than 5, so I am doing the ten year route. Walking/exercise helps a ot to prevent 5he leg cramps

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