Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Differences in SEs with Tamox from different manufacturers

cycle-path
cycle-path Member Posts: 64
edited September 2016 in Hormonal Therapy - Before, During, and After

This keeps coming up so I thought I'd start a topic where the information could be collected in one place. 

Tamoxifen Citrate was once a branded drug but when the patent ran out the original manufacturer, Astra Zeneca, stopped making it. The branded version is no longer available, only generics.

I've read (though it might not be true) that few side effects were reported with the original Tamox from Astra Zeneca and that SEs started with the generics. Here on BCO many women report having few or no SEs on Tamox until their pharmacy switches them (generally without notification) to the Tamox from a different manufacturer. Then the SEs -- sometimes nasty ones -- begin.

Tamox users, past and present, would you list your SEs and the name of the manufacturer of the pill you take? 

«13456

Comments

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012

    In the US I believe the manufacturers of Tamox are Teva, Barr, Mylan, and Watson. (Those from other countries and those who know of other US brands, please comment!) Generally the name of the manufacturer is printed somewhere on the patient label, but if you can't find it, take one of the pills and go to http://www.drugs.com/imprints.php and type in the code that's imprinted on the pill. It will tell you the manufacturer.

    If it says 93 782 or 93 984 on one side, for example, it's from Teva. If it says Barr on one side it's from Barr. If it says M on one side it's from Mylan. If it says WPI on one side it's from Watson. Etc.

  • sweetbean
    sweetbean Member Posts: 433
    edited January 2012

    I'm taking Mylan with very few side effects, although I am concerned about weight gain.  Can't tell if that is from the Tamox or the holidays.  It's just a couple of pounds, but still...

  • jwilco
    jwilco Member Posts: 209
    edited January 2012

    I'm on my second month of tamox and although I'm not sure of the first bottle, this one is Teva.  I haven't had any noticable side effects.  I was cranky with the first month, but that could have been surgery recovery and the holidays.  This last bottle no problems.

  • starbeauty
    starbeauty Member Posts: 106
    edited January 2012

    Watson labs... 1.75 years... Joint pain, vaginal atrophy, hot flashes,cold flashes, eye "waves", elevated bp, elevated cholesterol, elevated liver panel, depression, emotional lability, recently pelvic cramping. initially... Just had hot flashes

  • starbeauty
    starbeauty Member Posts: 106
    edited January 2012

    Would people also indicate how long they have been taking Tam?

  • proudmom_wife
    proudmom_wife Member Posts: 176
    edited January 2012

    cycle-path - thank you for starting this thread.

    Teva - took for about 4 months. Slowly started to develop joint pain, then it got really bad and could not sleep at night.  

    Mylan - Just started my 3rd month, no more joint pain. Yippy! It literally disappeared within one week of the switch. Don't know if my body has been adjusting to the medication or because of the overall healing process from what I have put my body through this last year but coincidentally since the change in manufacturer my hot flashes are not as annoying and a little less frequent and I am sleeping better at night.

  • starbeauty
    starbeauty Member Posts: 106
    edited January 2012

    Proud mom-wife... Very helpful info... Think I will try to switch with the next refill from Watson to mylan

  • proudmom_wife
    proudmom_wife Member Posts: 176
    edited January 2012

    Since manufacturers use different combinations of fillers, what effects one person might not effect someone else in the same way.  If you go to Drugs.com and under Pill Identifier you can look up and compare the different manufacturers of Tamoxifen and see what fillers (inactive ingredients) they use.  You might see something listed that you know your body does not respond well to.

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012

    I started Tamox from Watson just over a week ago. 

    I finished surgery and radiation almost a year ago. My BS wanted me to take Tamox but my MO was ambivalent. I think she's heard too many complaints. Anyway, she left it up to me. I was dealing with a number of small health issues in 2011 and I wanted to get all those cleared up before starting Tamox. Finally in December I beat back the last of those things and told the MO I wanted to give Tamox a try. So here I am.

    I do notice some vaginal discharge, but nothing excessive. I was getting some vague headaches a few hours after I took the pill and I HATE headaches so I started dividing the pill and taking divided doses. I think that helps with the headaches.

    I definitely have constipation from the Tamox, yep, no doubt about that! I doubled up on my probiotic and started taking Colace every other day. I haven't talked to my MO about the Colace idea but it keeps the constipation from being too terrible. I figure one pill giveth and one pill taketh away. I'll see what the MO says when I see her.

    Hot flashes -- not worse, per se, but different. More sweaty -- almost like a cold sweat sometimes. I think I've sweated more in the last week than I did in my entire previous 59 years, no exaggeration! Much more laundry to do, much harder to find garments that one can wear all day.  

    But here's what bothers me the most: Burning Mouth Syndrome. I first got BMS when menopause started, and it was greatly alleviated by HRT. Stopping HRT started it up again, and Tamox has made it much, much worse. (Yes, it's a known but somewhat rare menopausal symptom.) 

    I'm planning to stay on the Tamox for now and will probably try another manufacturer's when this prescription runs out, just to see if it makes a difference.  

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012

    ProudMom Wife: "If you go to Drugs.com and under Pill Identifier you can look up and compare the different manufacturers of Tamoxifen and see what fillers (inactive ingredients) they use."

    I was unable to find this at the drugs.com web site. Can you provide more detailed info? Thanks. 

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012

    Interesting thread - thanks for posting.  I will be starting Tamox in a few weeks, and have the option on whether to get prescriptions filled in the U.S. or in Europe, where I currently live.  I'm not sure whether Tamox in Europe is different than what is given in the States, but plan to ask at a doctor's appt. this week.  

    Does anybody have experience with Tamox outside of the U.S.?

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012
    Joy, at the bottom of this page: http://www.merckmanuals.com/professional/print/lexicomp/tamoxifen.html you'll find a list of the names of generic Tamox made outside of the US. I know this isn't the info you're looking for but perhaps it's a start.
  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012

    cycle-path    Thanks for the link - I did find it there, I'll ask about it at the local pharmacy. 

  • PLJ
    PLJ Member Posts: 65
    edited March 2012
  • Mandalala
    Mandalala Member Posts: 41
    edited January 2012

    Tamoxifen from Sandoz, which I was on for six days in October 2011 (and will soon try again). 

    Side effects: some hot flashes, that may have been from nausea really • mild joint and muscle pain day 2, 3 and 4 • nausea • diarrhea causing weight loss and dehydration.

    joyh1109 – yes, I had mine prescriped, bought and consumed in Stockholm. Don't know if there is a difference. The nausea and diarrhea thing seems to be unusual but not unheard of both here and there.

  • proudmom_wife
    proudmom_wife Member Posts: 176
    edited January 2012

    cycle-path here is how I found the fillers for the different manufacturers.  You can't do a side by side comparison, but you can copy and paste or print each out.

    - Go to www.drugs.com
    - On the menu, for me at least, the second 'tab' is Pill Identifier, click it
    - There is a disclaimer, which you should read, then click 'I Agree' if you agree to it
    - On the next screen you can do a Search for the inactive ingredients by
    - Drug Name, I put in Tamoxifen in order to get a list of all the manufactures
    - National Drug Code, which should be on your prescription bottle, it is on mine
    - Or by pill description
    - Once you find the one you want click on 'View Pill Details', another window opens and next to pill picture it lists the Inactive Ingredients 

    Oh, I also got a headache and upset stomach at first, then I discovered that I had to eat my breakfast about 30 minutes to an hour after taking the tamoxifen.  When I do that, no headache and no upset stomach.  

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012

    Thanks, Proud Mom! I was actually doing that same thing but for the pill I looked at, the WPI, no inactive ingredients are listed! So I thought I was looking in the wrong place. 

    If anyone's interested, there's a list of inactives for the WPI Tamox here: http://pi.watson.com/data_stream.asp?product_group=1646&p=pi&language=E

    They are croscarmellose sodium, lactose monohydrate, magnesium stearate, microcrystalline cellulose, and pregelatinized starch. That's the same as the inactives in the Barr product, interestingly.

  • LtotheK
    LtotheK Member Posts: 487
    edited January 2012

    I am only recently getting educated on this, and so all I know is my former Tamoxifen had an "M" on it, which I understand is Mylan.  Now I am on WPI, or Watson.  There was a bottle inbetween, and I'm not sure what that was, but I know it wasn't "M". 

    Previously, I had hot flashes and minor joint pain.  Now, I have significant back pain every day.  I have trouble sleeping from it.  The hot flashes are all but gone, but it's winter.  That might explain some of it. All cause constipation.

    From reading this thread, my situation is consistent with some.  It is well worth trying to switch back to Mylan.  I have been on this for a little over a year.  The only other issue I'll add is that SEs are supposed to be cumulative on this, so the increased joint pain could just be my reaction to the drug effect.

    Thank you for starting this thread.

  • gentianviolet
    gentianviolet Member Posts: 105
    edited January 2012

    I have been on Watson tamoxifen and have experienced hip and knee pain.  I did increase my fish oil trying to take care of the extreme discomfort; I would say it reduced the pain by 50%.  However I did just purchase some Mylan to try to stop all the pain.  I had hot flashes, but then who didn't when it was so freaking hot for about 6 weeks this summer.  Now I seem to only have them once I lie down to go to sleep.  I have not experienced constipation yet but I use a lot of magnesium because the calcium pills I take.  I like this thread and only hope that a switch will make things less painful for me; I would have never thought that a manufacturer might just make a difference.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012

    Seems that Tamoxifen Teva is available where I am.  I have no experience with Tamox yet, guess I'll start with this one and see how it goes. 

    My onc tested me for metabolism of Tamoxifen - does anybody have experience with testing like this?   

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited January 2012

    Hi Gals.... This is the link that I found, from phone calls, and the FDA!

    When I talked to one gal at Astra Zeneca, she referred me to the makers of the generic Tamoxifen I was taking when I went deaf.   I took tamoxifen for 14 months, before I lost my hearing.    http://www.drugs.com/imprints/barr-904-1100.html 

    I called them, they sent me questionaires, I sent them back along with the samples of my pills, and that's the last I have heard....I didn't expect to hear anything.....  (that's funny, kind of, because I CAN'T hear...Undecided)  Oh well....This was last April, I believe.  I'm just not taking anything.

    I DO honestly believe that depending on what drug company makes the Tamoxifen, that determines what side effects you will have.  Or maybe it also has to do with our own personal make-up?  I mean, we are all different....

    But Tamoxifen is a form, or in the same class of drugs as chemo....and we all know that chemo is very bad on hair follicles....which is what the "nerves" in your ears are.  Once they are damaged, it is permanent.

    And yes Joy, I metabolized Tamoxifen very well....and had very little SE's except for the deafness.  I DID take Melatonin for wakefulness, but had to quit because it caused diahrreah, then I was taking about 4 Ammodiam AD because of THAT, and finally I quit the Melatonin, & it all quit!  And the leg cramps were rough!  Wink But I could put up with that.  I'm just afraid to try any other drugs at this point.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012

    Chevyboy   So sorry to hear of your terrible SE!  And I was thinking that if someone was tested to   metabolize the drug well, SE's would be minimal?  So much for my reasoning!   

  • sweetbean
    sweetbean Member Posts: 433
    edited January 2012

    Tamoxifen is not in the same class as chemo.  They are not the same type of drug.

  • LuvLulu07
    LuvLulu07 Member Posts: 596
    edited January 2012

    I looked up Tamoxifen - Wiki's description (I know that it's not the most reliable source) Tamox is an antagonist for estrogen receptors, and an agonist to endometrial tissue.  So the way that I interpret this - while it blocks estrogen for tumors driven by estrogen, endometrial tissue can change and is at a greater risk for cancer. So we can hope that BC is kept at bay, but worry about endometrial cancer?   

    I've always had uterine fibroids, wonder if this is a problem?? 

  • LtotheK
    LtotheK Member Posts: 487
    edited January 2012

    Sweetbean, can you talk a little more about that?  I have often referred to Tamoxifen as a form of chemotherapy.  It attacks quickly dividing cells in a targeted way, whereas Taxanes, for instance, attack a wider range of these cells.  I could be wrong, I'd like to know.

    Joy, the risk of endometrial cancer is very low.  Low enough that my outstanding gynecologist told me not to worry about ultrasounds, and suggested that if I have unusual bleeding to come to her directly.  She did say I should expect a biopsy within the five years I'm on Tamox, but I haven't seen a period in almost 18 months at this point.  No spotting, nada.

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012

    On another thread today, "mfrog" posted the following: 

    I've been on a number of different estrogen suppressors & had to go off them because of severe joint & bone pain. In looking at the various formulas & some of them are hard to find, every one of the generic drugs uses lactose as a filler. I am lactose intolerent, not with stomach issues, but I had to stop drinking milk etc because of severe pain in my legs. Perhaps some of you may also be lactose intolerent? HTH someone....  

  • Mandalala
    Mandalala Member Posts: 41
    edited January 2012

    About Tamoxifen being chemo – this text from Wikipedia seems to clear it up ... in a broader sense, Tamoxifen is chemo, as well as antibiotics and sulfa. But in modern use, the term chemo is used mostly for cytotoxic treatments (if cytotoxic is the right term). 

    The term chemotherapy

    The word "chemotherapy" without a modifier nowadays usually refers to cancer treatment, but its historical meaning is broader. In the most simple sense, chemotherapy is the treatment of an ailment by chemicals especially by killing micro-organisms. As such, the term has been used for non-oncological use, such as the use of antibiotics (antibacterial chemotherapy). In that sense, the first modern chemotherapeutic agent was arsphenamine, an arsenic compound discovered in 1909 and used to treat syphilis. This was later followed by sulfonamides (sulfa drugs) and penicillin. Other uses that have been termed chemotherapy are the treatment of autoimmune diseases such as multiple sclerosis, dermatomyositis, polymyositis, lupus, rheumatoid arthritis (See DMARDs) and the suppression of transplant rejections (see immunosuppression). 

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited January 2012

    There is a web-site talking about drugs, and listed under chemo drugs is Tamoxifen.  Maybe in the broader sense it is.... I just know that chemo usually means losing your hair...and since the "nerves" in your ears, are little hairs, that is why I figured I went deaf....like overnight!   And  about a week later, the other ear plugged up.....

    I can't get on BC.ORG on with Firefox, and AOL isn't woking right now, maybe because of the snow, but when I can get back on tomorrow, I will post the link..... 

  • sweetbean
    sweetbean Member Posts: 433
    edited January 2012

    Hi there,

    Tamox is not a chemo drug. It blocks the estrogen receptors on our cells, including our cancer cells.  Picture your  cancer cell, hungry for estrogen.  It's looking to eat up some delicous and nutritious estrogen.  Then you take your Tamoxifen, which is the equivalent of putting a gigantic piece of tape over your cancer cell's mouth.  It can't eat up  the estrogen now.  This is why docs refer to Tamox "starving" the cancer to death.  

     Tamox is not considered a cytotoxic drug - it is considered cytostatic, in that it does not kill the cell directly, but holds it in check.  You can also starve your cancer cells in other ways, by not feeding them sugar and fat, which they love.  You can deprive them of an inflammed environment by exercising regularly and taking supplements like curcumin, fish oil, and baby aspirin.   You can increase the efficacy of Tamox by taking AvemarUltra, a wheat germ extract supplement.  

    Chevyboy, I'm so sorry that you lost your hearing.  Is there anything they can do? 

  • Chevyboy
    Chevyboy Member Posts: 10,258
    edited January 2012

    Morning gals!  One of my friends who was taking Arimidex told me that Tamoxifen was a chemo drug.  And I argued with her & told her I don't think so!  But then I started looking it up, and found this...

    http://www.chemocare.com/bio/tamoxifen.asp

    I started researching a lot more, after I lost my hearing....and when my PC said it wasn't allergies, and she sent me to an ENT.  (I took Tamoxifen for 2 more months, thinking it was allergies, and doing the nasal rinses, Allegra, and nose spray)  She sent me to an ENT... and HE said drugs can cause permanent hearing loss. 

    And it was my Husband that said, "It has to be something you are taking!"...So that's when I started researching and I quit taking Tamoxifen.  I just got so afraid, when I found a lot of information on the Web. And all I could do was get hearing aids....  The tech at Costco, also said that ANY drug can cause deafness....He lost his hearing for 4 days once, when he took too many Aspirin after being in a bad accident....But his hearing came back.

    My Daughter sent me this...

    http://www.ehealthme.com/ds/tamoxifen+citrate/deafness

    I think because I am older, that maybe since I don't have as much estrogen running around in there, that the Tamoxifen went after my hair follicles?  My hair started thinning pretty fast, & since the "nerves" in your ears are little hairs... they just were completely damaged.  (Your nerves in your ears "stand up" like holding your hand, palm up, & wiggling your fingers... when you hear sound, the nerves vibrate, or move & send signals to your brain, and you can hear)  But nerve damage causes those hairs to "lay down" & they don't move...

    My hair isn't thinning anymore...but I have been deaf for about about a year...It's permanent.... even though I didn't believe that when he told me. But at least I have good hearing aids....

     It COULD have been worse....like something happening to my eyes, or a stroke...etc..... I'm just taking supplements and vitamins now, & feel great...

    Just take good care.... If you notice ANYthing wrong, get it checked out....and it wouldn't hurt to stop ANY pills while you are trying to figure it out!

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.