Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Donate to Breastcancer.org when you checkout at Walgreens in October. Learn more about our Walgreens collaboration.
Join us for a Special Meetup: The Benefits of Exercise for Anyone With Breast Cancer, Oct. 16, 2024 at 2pm ET. Learn more and register here.

Differences in SEs with Tamox from different manufacturers

1235

Comments

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited November 2013


    Loral to be honest I couldn't tell you if we do or not. And that's a shame Rite Aid bought out my old company years ago, and the "take over" didn't go well down here in the south! Guess I need to check, thanks so much.

  • smo23915
    smo23915 Member Posts: 71
    edited November 2013


    I called and spoke to the people at Mylan, today. Tamoxifen is not discontinued, it is still "temporary" discontinued. And, I was told it is on the top of the list when they start up on the temporary discontinued, products. Because so many people have called about it being the brand with the least SE. they are aware of the problem we all face and told me to continue to call them and let them know. It will influence their decisions. I was glad it hear it is on the top of the list. Here is the phone number and web site:


    http://www.mylan.com/contact_us.aspx


    724.514.1800

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited November 2013


    Yay! Best news I've heard today! I will call them tomorrow. I was on the phone with my drs office earlier today complaining of that very thing and all the crappy SEs with Watson. Thanks for posting. :-)

  • Dilly45
    Dilly45 Member Posts: 3
    edited May 2014

    Hi everyone, I see there hasn't been any posts on this thread for a year or so.  I'm about to make a decision about stopping taking Tamoxifen due to the side effects, but am going to try another brand as a last attempt.

    I'm getting a new prescription to take this one (Activis) and found some information on the following PDF link - I have had lower leg cramps, hip pain and depression for 4 years.  I am currently taking the Tamoxifen by RelonChem 20mg and have been on this for 2 years after 2 years of trying different brands of aromatase inhibitors (Letrozole/Arimidex/Exemestane) which made my hands ache and cramp, so worse.  

    The recent recommendation here in the UK is to take tamoxifen for a further 5 years and I'm seriously thinking I'm going to have a break from it for 6 months just to see if there's quality of life without taking it.  It's a very serious decision but I am so fed up of the aching.  I am 57 years old.

    http://www.actavis.com.au/NR/rdonlyres/43F043E8-2C...

    DESCRIPTION

    Tamoxifen citrate is a white or almost white, crystalline powder, slightly soluble in water, soluble in methanol,

    slightly soluble in acetone.

    TAMOXEN®

    10 & TAMOXEN®

    20 tablets also contain lactose, povidone, magnesium stearate, colloidal anhydrous

    silica, maize starch, purified water. 

    This is noted: Leg cramps and myalgia have been reported commonly in patients receiving tamoxifen. 

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited May 2014

    Dilly45, when I was diagnose in Sept 2011, I was told 5 years on Tamoxifen, I've now been on it since March, 2012 and was told last week I would be on it for 10 years unless studies changes before then.  Yes I have the wonderful side effects, bone and joint paint, eye problems, fatigue, insomnia, hot flashes and night sweats,  and recently since I changed mg (taking 2 10mgs because they couldn't get it in the 20mg)  bloating and weight gain.  I will do what ever I have to remain on it till the end.  I have a friend who 2 1/2 ahead of me couldn't take tamoxifen and was allergic to arimedex, so she was on nothing just monitoring every 4 months.  It came back in bones, small spot in lung and breast wall she's been doing chemo since 11-2014 and apparently all have sunk, she will now be on Avastin.  So because of her recurrence I personally will take it.  My new problems is   3 weeks ago I sprain my left ankle, last week I fell again and this time broke it and they want to do surgery.  Told me oncologist and now he wants to do a bone density scan.  Yeah for me  

  • maxineo
    maxineo Member Posts: 199
    edited June 2014

    Hello all! I got a phone call from Mylan last week.  (yes, a phone call!) telling me that they were again manufacturing Tamoxifen.  I would like to think that all of our phone calls did some good.  Yeah, us!

    I have switched to arimidex, but for those on tamoxifen who had a better time on Mylan, you may want to contact your pharmacist.

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited July 2014

    ok, so for the last week I have been trying to get the Mylan brand tamoxifen, CVS, Walgreens, and even a private pharmcy still can't get it. Apparently in my area the wholesaler is McKesson and they have not contacted Mylan to set up purchasing. I even called McKesson myself only to be told they don't speak to individuals only companies. It's a damn shame we get the drug companies to listen to us only to have wholesaler dictate what we can buy. So frustrating!!!!

  • coraleliz
    coraleliz Member Posts: 158
    edited July 2014

    When I wanted to try the Mylan brand a couple of years ago, I was initially told "no" by the CVS pharmacist. The reason was because they had a "contract" with Teva. I called all the pharmacies in town & the only one willing to order it for me was KMART. After finally getting the Mylan brand to try, it turned out the SEs weren't different. So, I guess my problem(s) is with the drug not the fillers? I regretted all the effort I put into it. Although it does seem to help some.

  • proudmom_wife
    proudmom_wife Member Posts: 176
    edited August 2014

    Was able to get my Rx refilled with Mylan brand from CVS today.  Yay!  Been using Watson since it was discontinued, adjusted to it, but want to go back to Mylan again since I had less SEs with Mylan and they were responsive to our calls and emails.  

  • lenn13ka
    lenn13ka Member Posts: 104
    edited August 2014

    Thanks .. I will try at my CVS again. I asked last month and they couldn't do it.

  • mstrouble16
    mstrouble16 Member Posts: 177
    edited August 2014

    On July 15 and August 15 I have refilled my prescription at CVS for Tamoxifen and it was the MYLAN brand, YAY!!!!!!!!!!!!!!!

  • trail2
    trail2 Member Posts: 33
    edited August 2014

    Glad to know that others are able to get the Mylan brand again.  My CVS ordered it for me, and I have been on it almost a month.  I do think there are less side effects for me.  I had emailed customer service at Mylan, and they actually called me back.  Most recently to tell me that their brand of Tamoxifen was back on the market.  It took a while for it to get into the warehouses, but thank goodness it is available again.    Now,  that being said,  my oncologist is wanting me to try Femara since I am now menapausal and been on tamoxifen for 3 years.  Said evidence is pointing to a combination of tamoxifen and other AI drugs have better results and would mean not having to take Tamoxifen for 10 yrs.  Hoping I can tolerate it.    Good luck to others looking for Mylan, it is out there !

  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    Does anyone know if Mylan brand is available nowadays?

  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    Just to add to the collective info on this awesome thread:

    I have been on Teva for almost a month: headache all the time, minor joint pain, super dry mouth (hellish), dry skin, burning urination as if I haven't drunk enough water but I have. One good thing: it makes me very energetic and happy feeling overall (not depressed in the slightest).

    I tried Watson for two days: Horrible! Extreme feeling in my head as if my face would explode, and severe joint pain.

    I haven't tried Mylan yet but I hope so much that it is better. I want this dry mouth and headache to go away!

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited April 2015

    Yes, Mylan is available! I just started it again on Sunday. You may have to specifically request it and have it written in to your script like I did. CVS here in North Carolina normally carries only Watson. But I had noproblem getting it. :

  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    I just got Mylan at Publix pharmacy! I hope so much that it's better! There are two inactive ingredients that seem very sketchy to me, silicon and sodium lauryl sulfate, but we'll see how it goes. Also a lady on another thread told me that Apo Brand in Canada does not have lactose, and that it turns out she's allergic to lactose and that is why she had bad side effects on other brands. So that is something to consider. But I think all three American brands have lactose in them.

  • lekker
    lekker Member Posts: 238
    edited April 2015

    I saw in today's Wall Street Journal that Teva is trying to acquire Mylan. I'm not sure what, if any, impact this will have on the manufacturing of tamoxifen, but wanted to let you all know

  • lenn13ka
    lenn13ka Member Posts: 104
    edited April 2015

    I have been able to get Mylan since last Fall. My local CVS just tried to fill a 3 months prescription with Watson and I brought it right back. I am not taking that brand again, ever! I am supposed to switch to an aromatase inhibitor in June and I am really not looking forward to it. I have had it so easy with the Mylan brand of Tamoxifen.

  • katcar0001
    katcar0001 Member Posts: 321
    edited April 2015

    I bought Nolvadex today in Mexico. Unfortunately, I cannot find the list of ingredients for the Mexican version. I am also lactose intolerant. We will see how it goes!

  • GG27
    GG27 Member Posts: 1,308
    edited April 2015

    I took Nolvadex & had no issues with lactose in it. It was one of the only ones I could take. The other was APO which gave me even less problems. GG

  • katcar0001
    katcar0001 Member Posts: 321
    edited April 2015

    Thank you, GG27. Hopefully, it's the same "recipe."

  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    Wow Katcar, I can't wait to hear how it goes for you! Was there any problem with buying it in Mexico?

  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    What side effects were you having on the American brands, Katcar?

  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    Mylan is just as bad for me so I'm wondering what to try next. I want to get the CYP2D6 test in case poor metabolism is causing the side effects.

  • caligirl3
    caligirl3 Member Posts: 13
    edited April 2015

    Oceangirl65: I was told by my Dr. that having side effects is a good sign, means you are responding (metabolizing the tamoxifen). When I asked about the CYP2D6 test, she said she does not order the test because it has been shown to be unreliable. I should have asked what she based that opinion on, research, studies? It is so hard to wade through all the different recommendations and conflicting information. Has anyone else been told that this test is unreliable?

  • MidLifeCrisis
    MidLifeCrisis Member Posts: 15
    edited April 2015

    caligirl .. i am very new to learning about this CYP2D6 - having just come across it in an earlier post on a diff board by Oceangirl. I found this article to be extremely helpful in understanding it and what the current recommendations are. Although it is not being supported, it seems it could add significant value and I sure do hope it gets more attention and is researched more.

    http://www.ncbi.nlm.nih.gov/books/NBK247013/?repor...!po=3.33333


  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    Hi Caligirl, I think it's true that side effects are a good sign, but not dry mouth. The side effects that are a good sign are hot flashes and maybe joint pain, because they indicate that your estrogen is lower now. But dry mouth is an unusual thing to experience on tamoxifen and that's why I'm wondering if it's a sign that something is wrong. It certainly feels like my body is screaming out that whatever is in this pill, whether it be the tamoxifen itself that is not being metabolized and is reaching too-high levels in my blood, or the inactive ingredients that I'm not tolerating, is not good for me. Anyway, I hope I can figure this out! I haven't had one hot flash, which makes me think I'm not metabolizing it. I will read this article- thanks for posting it, MidLife!

  • katcar0001
    katcar0001 Member Posts: 321
    edited April 2015

    OceanGirl - I have not really had many side effects since the first month or so that I started taking Tamoxifen. I started out on a Mexican generic brand (Tamoxifeno) in Dec. and Jan., and my MO wanted me off (doesn't trust generics, at least not Mexican ones), so then switched to Teva in Feb. It's very easy to get Tamoxifen in Mexico--no prescription required. Nolvadex runs about $21 for 20 days; Tamoxifeno is about $8 for 30 days. I had horrible dry mouth on the Tamoxifeno, but it resolved. The hot flashes I experienced the first month stopped, which concerns me. I kind of miss them as I felt they were a good sign. I plan to ask my MO about it in July. I have lower back pain at night often, but I had that for years prior to Tamoxifen. I have a theory--which is that my lactose intolerance is causing the back pain. I am trying to cut out dairy and so don't want pills with lactose in them. BTW, I had the CYP2D6 test, even though it probably doesn't mean much--I am in the excellent metabolizer category.

  • caligirl3
    caligirl3 Member Posts: 13
    edited April 2015

    oceangirl: I hope you get a resolution to your concern. Hopefully the new Onc will agree to do the test for you.

    Midlife: Thank you for the information!

    Will there ever come a day when this cancer fear is not constantly on my mind?!!

  • oceangirl654
    oceangirl654 Member Posts: 59
    edited April 2015

    Hi Katcar, Thanks so much for telling me! It sounds like the Nolvadex you're getting is the brand name, non-generic one. Is that true? If so, it doesn't have lactose in it. Have you been able to confirm that? Did your dry mouth stop when you switched off the generic? That is so interesting to me and gives me hope! This dry mouth thing is making me completely crazy. I can't stand it! Do you think if I switch to the brand name it will go away? Or did yours just go away with time even when you were taking the generic? Please let me know because this is super important for me! I have lower back pain at night too- it is the sacroiliac joint, and it started with the tamoxifen. I had it eight years ago after I gave birth but it had gotten better. I guess it's a good sign, that estrogen is lower now with the tamoxifen, so that's a good thing hopefully. Unless it's from the fillers they use.