Tamoxifen and fatigue

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AntoniaM
AntoniaM Member Posts: 4
edited August 2017 in Hormonal Therapy - Before, During, and After

I started taking Tamoxifen 20 mg in July 2014 just after finishing chemo and before radiation. I have been dealing with extreme fatigue since. There are days that I just could not hold my head up or even have and intelligent conversation because I was so tired. I was taking it in the morning and my day was just awful, so I switched it up and started taking it after dinner and that helped a bit. I started taking vitamins like a multi vitamin with energy, fish oil and B-12 just to help me have enough energy to get through a day. I complained and complained to my MO about this med and so he gave me a 2 week break and I felt WONDERFUL! Unfortunately I had to go back on this awful medication.

About 2 months ago I started doing some research on the different manufactures of Tamoxifen to find 5 major suppliers (there are 2 more): Mylan, Teva, Roxanne, Watson (now Actavis) and name brand Astrazeneca. The inactive ingredients are what I was looking at. So, I had all my information ready to present to my MO and the week before my appointment I got the stomach flu and did not take anything for 5 days prior to my appointment and WOW I felt great (other than the icky stomach). I took my husband to the appointment to help me present my case to my MO. First I told him how great I felt being med free for 5 days, my husband told him how tired I get. Then I presented him with the spread sheet showing the different manufactures and the different inactive ingredients. I was taking Teva which has 8 inactive ingredients. Name brand Astrazeneca has 4. So, I asked my MO if I could try a different manufacture. he said absolutely.

Now to be able to switch manufactures was going to be a big deal as I have to mail order my meds and all this time I felt I had to take what they send me. I had the new med filled at my local pharmacy for a 30 day to "let's see how this works under the new manufacture". As I was feeling better I started the process of jumping the hoops for the mail order as I felt this med was working. Oh, my 3 supervisors, and hours on the phone they finally got the new manufactured med for me and expressed shipped it to me.

Today has been 30 days on the Watson brand (now Actavis) which has 5 inactive ingrediants and I feel like a different person. I am tired but nothing like I was. I have swapped the extreme fatigue for muscle/joint pain. I sleep better now, the hot flashes are not as bad and I have started working out again.

Thank you so much to all of you that post your stories and experiences, because reading them has helped me so much and was what prompted me to do the research on the Tamoxifen. :)

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  • Live4them
    Live4them Member Posts: 65
    edited May 2016

    Wow AntoniaM !! You have me thinking maybe I should try to switch it up and see if I feel better with another manufacture .. So less hot flashes and fatigue ? I'm on Teva now have been since January . I take it at night because taking it thru the day makes me exhausted but taking it at night makes me have more night sweats . Thank you for the info I think I might give that a try

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  • AntoniaM
    AntoniaM Member Posts: 4
    edited May 2016

    Live4them, my hot flashes have been cut in half, I am not sweating like crazy anymore. I still take this med after dinner. And as long as I have a fan on I have been sleeping much better. I think there is a huge difference between being tired and being fatigued. I feel tired now, but I can now function all day. However if I overdue it over a few days, the next day I just rest up and I am good to go again. I thought it never hurts to try. Good Luck :

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  • Marcasey
    Marcasey Member Posts: 4
    edited March 2017

    AntoniaM - you are an angel!!!

    I've been on Tamoxifen for 3 years and am a shell of my former (pre-tamoxifen) self. I have no energy at all and feel depressed most days. My oncologist told me my symptoms were unusual which made me feel worse. I've been struggling with this condition for years now with no relief. I thought it was just menopausal or thyroid and have seen multiple doctors for analysis. Except for low iron, noone could explain my constant fatigue. I've been feeling this way since starting tamoxifen.

    Recently I thought of going off tamoxifen so I could get my life back but worry about the risk of breast cancer reoccurring. Your post about different components in Tamoxifen depending on manufacturer have given me hope. I currently take Tamoxifen manufactured by Mayne. My pharmacist said they can get Mylan or ATV (which I think may be Astrazeneca).

    I'm a sensitive person and think the inactive ingrediants in the drug would have an effect on me.

    Thanks so much for sharing your experience.

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  • AntoniaM
    AntoniaM Member Posts: 4
    edited August 2017

    So sorry, I have not been on for awhile. I hope that you have gotten a new manufacture of Tamoxifen that works for you. I have now been on this manufacture now for over a year and it is still working for me. I did take the Teva" again just to see and oh my word was I tired. I thew that stuff in the trash to never take it again. I have switched MO's to one that her life's research is to help cancer patients with the after care. She has put me on some more vitamins, that seem to be helping me even more. I do know that I am counting down the days/years that I can quit taking this medication.

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  • sm627
    sm627 Member Posts: 298
    edited August 2017

    Hi AtoniaM,

    Thank you for the great advice about the trying different manufactures. I am going to be taking Tamoxifen next month. I will be sure to ask my MO about the different manufactures and brands. During your research where did you find the most useful information about Tamoxifen? Do you have any other tips for how to deal with the side effects?

    I am 33 and had a mastectomy(right breast) in June of this year to remove a 17cm Borderline Phyllodes tumor. My path report also showed I had ADH as well. I have been trying to research so many different things at times I feel overwhelmed, but after reading your post you have given me hope along with helping me to clam down.

    Thank you for sharing.

    Hugs,

    Sara

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  • llamalady
    llamalady Member Posts: 47
    edited August 2017

    Hi ladies. Thought I'd chime in as well. I'm new to tamoxifen. Have been on it now for 4 weeks. I was scared to death to start it and read about everything on here that I could find. I actually even asked for a sort of poll as to what brands ladies were taking that were not have bad issues with side effects. Of course we're all so different that there were ladies taking all the brands and doing really well.

    When I filled my RX I decided just to take whatever Walgreens had since I had to start somewhere. It was Teva. So far so good. I'm not having any side effects at all. I did start Lexapro 10mg about 2 weeks before the Tamoxifen because my MO said that helped many ladies particularly with hot flashes. I don't know if that's factoring in, but I'm going to leave it alone :-)

    But the main thing I wanted to share was a few ladies on here had talked about splitting their 20mg pill in half and taking 10mg in the morning and 10mg at night. I asked my MO about this and he was absolutely fine with it. So when I started taking it that's what I did. I split the dose. I have no idea if this is making a difference for me or not, but since I'm doing ok so far I won't be changing it.

    Just wanted to throw that tid bit out there and if you're interested in splitting your dose just run it by your MO first. My MO said it made no difference at all as long I got the 20mg down every day. Good luck!!!!!!

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