Please list your Tamox SEs according to brand of Tamox?

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cycle-path
cycle-path Member Posts: 1,502

You may have seen the other thread in which we've been talking about SEs experienced on one brand of Tamox and not on another. I'd like to collect a list of SEs by brand. This isn't a scientific survey, of course, but maybe we can help each other!

The brands currently available in the US are Teva, Mylan, and Barr, Watson. (Barr and Watson are the same pill.) If you're outside of the US, please list your brand as well but we probably won't get as many responses from elsewhere. 

If you've been on other brands, please list your experiences with those as well. If you're not sure what other brands you took, that's ok too, just say you don't know the name of the past brand. If you don't know the name of the brand you're now taking, identify it here: http://www.drugs.com/imprints.php 

Please also tell us where you were on the menopause continuum when you started Tamox. Were you premenopausal, getting close to or in the early stages of menopause, or postmenopausal? 

Thanks! 

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    Here's what BCO members have already reported, as I found by searching the archives.

    Lizzymack: Teva caused a rash and "a number of other problems. Now on Mylan, no SEs.

    Twilight: Itchy rash on Teva

    Betsy13: rash on Barr/Watson, not on Teva

    NYJanet: rash on one brand (not specified) but not on Teva

    Kira: joint pain on Teva, not on Mylan. 

    ProudMom_Wife: joint pain on Teva, not on Mylan

    LtotheK: Hot flashes, constipation, minor joint pain on Mylan. Constipation and significant back pain on Barr/Watson.

    Gentianviolet: hip and knee pain on Barr/Watson. 

    Phxsunshine: hot/sweaty flashes worse on Teva than on Mylan.

    Gidget01: hot flashes on Mylan, not on Teva

    Jo1955: gas on Teva.

    PLJ: she is lactose intolerant. Problems on unspecified brand, but not on Teva.

    Starbeauty: Barr/Watson caused joint pain, vaginal atrophy, hot/cold flashes, hypertension, elevated cholesterol and liver panel, depression, emotional lability, pelvic cramping. Other brand (not specified) caused hot flashes only.

  • Janeybw
    Janeybw Member Posts: 199
    edited January 2012

    Mylan here.  I have the most problem with hot flashes--several a day and at night.  I am a little fatigued, but not incapacitated.  I have joint aches especially in my ankles, but maybe only 1-2 times weekly.  I also have had some calf and foot muscle spasms.  Nothing horrible.

  • rapop428
    rapop428 Member Posts: 8
    edited January 2012

    Teva here - Hot flashes, insomnia, joint pain and depression.  Loads of fun!

  • newfmama
    newfmama Member Posts: 107
    edited January 2012

    TEVA 20 MG - Hives/rash, joint pain, depression, night sweats, nails splitting, dry skin, yeast infection (vaginal and thrush in mouth).  Within 4 days of stopping, many of these have begun to subside.

  • nowords
    nowords Member Posts: 423
    edited January 2012

    I take Barr.

    Started July 09.

     I have  nail splitting, thinning hair,  stiffness.

    The first year or so I had intense headaches for a period, severe leg cramps, foot cramps, hand and fingers lock up, gas pains, bloated feeling, dry eyes, lethargic, sluggish metabolism, tamoxi-belly cholesterol and sugar issues un-diet related.... lot of trouble focusing to read or balance checkbook etc. Looking back I don't know how much was from instant menopause, chemo, rads, cancer diagnosis and what was from Tamoxifen.

    This year I took 3 six week breaks because of DIEP surgeries and the clotting issue. By the end of the six weeks, my hair and nails improve. When I first go back on it, I get the headaches and fatigue and maybe an increase in appetite...the nails split again and the hair starts to thin...but they all seem to subside in a month or two, except for the hair and nail issues. I take 10mg at 10 am and 10mg at 10 pm. I notice a difference in how I feel   -    I feel better when I split the dose...my tablets are now 10mg...There is something called metabolic syndrome that effects some tamox users...not sure if I am one of them...but at my six month check up I will have some tests for lipid stuff and sugar related things that seem to have cropped up with the BC and tamox...now my weight is stable, I exercise, maintain a good diet; have a drink and desert now and again but not too much......hoping for the best. I am half way through my five years and chose not to switch to an AI...just got used to these pills...

  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    Let's add a question to the mix (and I'm going to go back and add it to my original post) -- where were you regarding menopause when you started Tamox? Premenopausal, getting close to menopause, or postmenopausal?

  • newfmama
    newfmama Member Posts: 107
    edited January 2012

    Getting close to menopause.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    I have another scenario...I was ovary-free thanks to a hysterectomy 15 years ago and was on HRT until diagnosis. Then I was dropped off the estrogen cliff into menopause. Ugh...

  • Mandalala
    Mandalala Member Posts: 162
    edited January 2012

    Sweden: Tamoxifen from Sandoz (a Swiss – not Swedish – company). Side effects: Nausea and diarrhea (plus a little muscle and joint pain day 2, 3 and 4 and some minor hot flushes).

    I was on Tamoxifen for a week, had a break for about 10 weeks and now I start trying again, with half the dose. I am pre-menopausal, but my periods are becoming less regular lately.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited January 2012

    Hi,

    I am pre-menopausal and on Mylan's Tamox.  I had hot flashes and joint pain for the first 6-8 weeks, but then they subsided.  I may be a bit constipated, but plenty of fiber and a splash of caffeine every once in a while seems to take care of the problem.  I got my period back in November and it has been regular.  I am 38, so I wasn't sure I would get it back.  I do not have hair thinning.  (My nails split a lot, but that might be the Herceptin - I'll know more when I finish Herceptin in May.)

    Thanks for starting this thread - this is a great idea.  I was just telling my dad how smart the ladies on BCO are.  :) 

  • fairweather9
    fairweather9 Member Posts: 76
    edited January 2012

    Hi,

    I'm taking the Teva, but have only been on it for about 2 months.  It made my last cycle about 10 days late, will see about the next one should be due in a few days but I'm not feeling it..  Other than hot flashes, lots of hot flashes lol I think I have been very lucky so far.  I was extra bolted before my period came and had slight pelvic discomfort but as soon as my cycle started that vanished, I guess I will see in a few days if that happens again

    oh I was pre men when dxed at the end of October

  • Maja2213
    Maja2213 Member Posts: 28
    edited January 2012

    Hi,

    Using Teva brand since April 2011.  Started Taxol only chemo in Jan 2011, had one period and then went into menopause or chemopause?  Was definitely perimenopausal before diagnosis.  Really, really awful hot flashes and night sweats for first 3 months.  Moderated now to what friends going through regular menopause seem to experience.  At around month 7, achy joints began starting in hips and now including elbows and knees and shoulders.  Extreme cold spells at night started at around month 7 too but they are starting to subside 10 months out.  Slightly bloated feeling all the time so I have actually lost 10 lbs because I have less of an appetite but I don't know if that is because of the Herceptin which I just finished taking a week ago.

  • Heathersmom
    Heathersmom Member Posts: 46
    edited February 2012

    I was in chemopause when I started tamox in March 2009, Barr brand, side effects were: hot flashes, brain fog, pelvic pressure, slight weight gain (5 lbs). I was also on herceptin at the time. I took the Barr tamox for 11 months. Was switched to femara, the week between the switch I wasn't on anything and I must have peed a river, I lost alot of water weight. Was on Femara for 15 months, cried "uncle" got tested on how well I metabolize tamoxifen (extensively) and went back on tamox, Teva, I split my pills in half cuz I was still dealing with the femara side effects, so 10mg of Teva and I had HOT FLASHES!!!! dizziness, head pressure -sinus/ears  (I could hear fine), depression, crying for no good reason, few headaches, weight loss (slight) and anxiety. I have been on "vacation" since mid November. I was on TEVA tamox for 6 months.

    I started the tamox (TEVA) again 2 days ago, however I am cutting a 10mg tablet in half and only taking 5mg per day. I don't know if I want to continue this or not. I am not totally back to normal but I feel a darn site better than I have in 2 years. The depression has lifted, and I can now think more positively than I have in a long time.

    I am still having hot flashes, like 6 times per day...they actually got worse and more frequent when I went off the tamox this last time. Has anyone else experienced that?

  • Golden01
    Golden01 Member Posts: 916
    edited February 2012

    Postmenopausal - Teva, 10 mg, 2 times per day. Hot flashes, hip pain, constipation, urinary urgency, maybe insomnia (not sure if it was the Tamoxifen). Interestingly, my MO did not associate my complaints of hip pain with Tamoxifen at all. In fact, he said it was probably because I'd had a cold and had not been exercising. He even gave me an order to get an x-ray to look for bone mets if the pain didn't clear up within a few weeks (talk about increasing my worry at holiday time!). My pharmacist helped me figure out what was probably causing the pain and I knew for sure when I went off Tamoxifen to get ready for a surgery and the pain went away completely within a few days! Will be re-starting Tamoxifen in a week or two but won't need to get those x-rays if the hip pain comes back. I do plan to get back to my yoga class as soon as my Plastic Surgeon gives the okay. How do they decide how much we take? I think my MO said I might be able to take 20 mg once a day down the road.

  • Ralsper
    Ralsper Member Posts: 352
    edited February 2012

    Teva - Hot flashes, night sweats, insomnia, knee pain and ankles pain. Chemopause.

  • TheNancyGirl
    TheNancyGirl Member Posts: 40
    edited February 2012

    Teva - premenopausal 

    I probably won't be popular here but I don't think I've had any SE's.  Maybe some increased joint pain but I had plenty to begin with. 

    eta:  I've been taking them since July 2011 

    eta (again) that I've had a lot of what may be Ovarian pain.  I'm going to ask my onc if that's from the tamoxifen. 

  • PlantLover
    PlantLover Member Posts: 622
    edited February 2012

    I was in chemopause when I started taking Tamoxifen.  After chemo, my doc started monitoring my Estradiol levels and when they started to indicate that I was still extremely pre-menopausal I agreed to Lupron shots for two months.  I then made the decision to have my ovaries removed but my doc still wants me to continue on Tamoxifen for at least 3 years.

    I take 20 mg. Teva brand.  SEs are extreme hip and knee pain, weight gain, & hot flashes.

    Nice thread, cycle!

  • fadheir
    fadheir Member Posts: 63
    edited February 2012

    I am on Tamoxifen for almost 3 years

    ( Nolvadex), 

    leg edema, joint pain and stifness

  • ProudMom_Wife
    ProudMom_Wife Member Posts: 634
    edited February 2012

    Using Mylan now over 4 months - only SEs are hot flashes and dry skin, annoying but I will put up with them.

    I was pre-menapausal before dx, went into chemo-pause, and ovaries are still shut down.  Most recent lab results have my estrogen levels nice and low.

  • GG27
    GG27 Member Posts: 2,128
    edited February 2012

    I started with APO a month ago & found that the bone pain & alot of the joint pain disappeared & I would like to stay on it as I have had so many problems with other tamoxifen & AI's.  But I have a rash on my arms that won't seem to go away.  I have my next appt with DR. on the 27th & was hoping not to have to go back before then.  Anything that has helped anyone else here?  I've tried coconut oil, Aveeno, polysporin & hydrocortisone....

  • cycle-path
    cycle-path Member Posts: 1,502
    edited February 2012

    mfrog, is the rash symmetrical? Meaning, is it on both arms and is the rash on one arm a mirror image of the other? Does it itch or burn? Does it seem to have any blisters?

  • GG27
    GG27 Member Posts: 2,128
    edited February 2012

    cyclepath, no the rash isn't symmetrical, it is much worse on my right arm, doesn't itch or burn & has no blisters.  It's almost like dry patches which go redder when I scrub them in the shower.  I got them about a month ago shortly after I started the APO, so I'm not positive it's the tamox, but it's the only change I've made.

  • cycle-path
    cycle-path Member Posts: 1,502
    edited February 2012

    I have a lot of skin issues myself and have fought many rashes over the years.

    A rash that doesn't itch is usually going to be either psoriasis or rosacea. If it's rosacea, the cortisone will make it worse. You might see if you can get a cream that contains either metronidazole or ketoconazole. I think ketoconazole cream is available over the counter as a treatment for athlete's foot. And metronidazole may be available OTC as a treatment for vaginal infections. You could go to the drug store and check the labels of some of those products.

    If it's psoriasis, the cortisone cream should help. But in both cases I would avoid soap like the plague, as well as hot water. Almost any rash is made worse by hot water (like in the shower) and soap. Use cool water to clean, and no soap. Pat dry with the towel, don't rub or scrub.

  • GG27
    GG27 Member Posts: 2,128
    edited February 2012
    Thanks cyclepath, I'll run over the the pharmacy this afternoon & look for both of those.  I'll let the pharmacist look at it too, perhaps he can make a recommendation.  Athletes foot or a vaginal infection on my arms, DH is going to think that's funny.Tongue out
  • vettegal
    vettegal Member Posts: 287
    edited February 2012

    3.5 years on teva.

    Side effects. Hot flashes, bone pain, fatigue, anxious, miserable. No sex drive, insomnia night sweats

    1 month on mylan.

    Side effects. Almost no hot flashes, night sweats are gone. My bone pain is doing soooooo much better!

    I had a hysterectomy 3 years ago.

  • pebee
    pebee Member Posts: 317
    edited February 2012

    was premenopausal before chemo.

    On Teva

    SE - weight gain, brain fog, horrible stiffness, anxious, sleep issues, night sweats

    has anyone tabulated the results yet?

  • flyjune
    flyjune Member Posts: 20
    edited June 2014

    For those of you taking Mylan, can you tell me where you are purchasing it?  I've contacted a few places, but haven't found anyone stocking that manufacturer.  

    Also, is there anyone taking Apoteq?  I heard that was another manufacturer of tamoxifen.

    Thanks in advance for your help!

  • cycle-path
    cycle-path Member Posts: 1,502
    edited June 2014

    My dad has been taking a generic drug manufactured by Mylan, and recently his mail-order pharmacy told him they couldn't get it anymore. My husband remarked that some generics have been in short supply in the US recently because insurance reimbursements have been reduced to the point that it's not profitable for companies to make some generics. (I don't know whether that's true but my husband is generally a pretty reliable source of info.)

    So I called a few pharmacies to see if I could get my dad's prescription, and indeed it was not very easy to get. I did finally find one. 

    Anyway, you may need to call several pharmacies before you can find one that carries the Mylan version. You might also consider contacting Mylan to see if they're still selling Tamox. It's still listed on their web site, but the site might not be up to date. 

    https://www.mylan.com/contact-mylan

  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Teva- 10mgs twice daily

    SE- Bone pain (leg), night sweats, insomnia

    Premenopausal 

  • cycle-path
    cycle-path Member Posts: 1,502
    edited June 2014

    flyjune, I went on the Apotex web site and they don't list Tamoxifen among their products.

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