Tamoxifen Detective: How I got my Teva back

tevaLast year, I shared the story of how I was given a different brand of my Tamoxifen at the pharmacy. It was made by Mylan instead of Teva, the brand that I’ve been in a long relationship with (click here to read the story). I felt confused. At the time, I hadn’t realized there were different brands, and I soon learned that patients could experience different side effects from each of these brands due to the fillers each manufacture uses. (The active ingredients are supposed to be the same though.) Patients can try different brands to see which has the least side effects for them.

This month, I’m learning from online support groups that many Teva patients are experiencing the same situation — their pharmacists are recommending different brands other than Teva. But each patient is being told a different story – either that the Teva product is being discontinued, that there’s a shortage, etc. What’s going on?

I’ve been taking the Teva brand for years now, and although I complain about this medication a lot, I am really not doing too badly on it. My uterus is still healthy (knock on wood!) and I don’t experience hot flashes – two biggies for me. The thought of trying a different brand concerns me. I want to stick with the devil I know. I once did give the Mylan brand a try for a few weeks, and I experienced dizziness and loss of balance, to the point where I thought I was having brain mets! This side effect was scary. I demanded my Teva back, and the pharmacy eventually ordered it for me. I felt a huge sense of relief, and suddenly the side effects that Teva did have on me were more acceptable.

This month I had another worrying interaction with the pharmacist. She stated that the Teva brand had been discontinued by the manufacture, and that my only option would be to go with the Mylan brand. I explained the symptoms I had experienced with Mylan, but the pharmacist pretty much ignored my concerns and suggested I take it anyway. I refused, and left the place.

I went online and did some research, hoping that the 8 Teva pills I had left would allow me enough time to find what I wanted. I learned that, apparently, Teva was acquired by a company called MaynePharma, so I reached out to them directly. The friendly representative I spoke to confirmed that they bought the Teva brand, and the good news is that the fillers are exactly the same – same exact drug and manufacture process. I was given the National Drug Code (NDC) for the 30-day supply (#51862-446-30), and I was instructed to provide this code to the pharmacy so they could place the order for me. MaynePharma even suggested that my pharmacy give them a call, if they experience any issues with the order.

I returned to the pharmacy, hoping to get better luck this time. The pharmacist looked up the NDC # and stated that the drugs would not be available until late March, and that there seem to be a shortage across the board for all the different brands of Tamoxifen. She also refused to contact MaynePharma.

I tried other pharmacies, including the one at my hospital. They all offered me the Mylan or Watson brand. No Teva.

Eventually, I found a pharmacy that would work with me. The pharmacist I spoke to was very empathetic when he heard the struggle in my voice on the phone, as I tried to explain my fear about taking the Mylan (or Watson) brand. The pharmacist said he would try to order it for me. And I am happy to report that I was able to get my Teva brand after all — just a few days later.

An experience like this adds to the difficulties of survivorship for patients like me. Some pharmacists do not realize how we develop a relationship with the drugs we are dependent upon for our lives. After going through a traumatic event, such as cancer, we desperately seek some level of normalcy or consistency. And this is so hard to accomplish, especially when we have no choice but to work within the pharmaceutical system. I don’t like changes forced on me, especially when those changes would make my life more complicated than it already is.

Yes, we have no choice but to take the treatments that are available to us, but it would be helpful if we could be allowed to gain some small level of control back after losing so much— even if it’s as simple as not having to jump through hoops to find and keep the drug we want and need.

——————–

A side note: I’d like to encourage everyone to ask their Oncologist what they’ve heard about the Teva acquisition. Was there a reason it was “taken off the market” in some areas? And please come back and share in the comments section.

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in c World, Coping after cancer, Tamoxifen, Treatment and tagged , , . Bookmark the permalink.

34 Responses to Tamoxifen Detective: How I got my Teva back

  1. Connie says:

    I wonder if some of the less-than-compassionate lack of care you received from the pharmacies, pharmacists, and manufacturers stemmed from the AGE of the people you interacted with. People who gave never had health issues can be curt and hurried, with priorities other than patient care.

    • thesmallc says:

      Both great points, Connie. I agree this may be related to the common human flaw, “if you haven’t experienced it, you don’t know the struggle”. Some don’t have the ability or the interest to understand where we’re coming from. The other possibility is that these pharmacies have contracts with their distributors and aren’t allowed to break them. I worry there may be something else going on. I will ask my Onco if she heard anything about this acquisition. Thank you for stopping by. xx

  2. helensamia says:

    So glad you found a sympathetic pharmacist.. i think some drug companies give kick backs for selling there products which does not help the consumer at all

    • thesmallc says:

      I don’t think the main interest is to help the patients, and maybe I am being harsh here. We can’t completely ignore the fact that it is still a business, but if we’re lucky, we can find people who can work with us. I got lucky this time. xx

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  4. Mandi says:

    I explained to one of my doctors that the adhesive to one of my drugs was giving me huge red welts on my back. She made adjustments so that I wouldn’t have to deal with welts. Never hurts to stand up for your comfort and happiness when it comes to drugs!

    • thesmallc says:

      Hi Mandi, I haven’t tried asking my doctors directly about these issues; thanks for the tip. I’ve always felt doctors never want to be involved with the pharmaceutical drama, and maybe they should. I tried contacting my hospital pharmacy but they went by what the system told them was available. Now I am trying to look into why Teva wasn’t available in some areas (have read some interesting articles about quality control, but nothing solid). xo

  5. Marg Brown says:

    I know this sounds bitter, but nothing gives me more anxiety than having to try and advocate for myself to a pharmacists. There has to be a better way. I don’t take tamoxifen anymore, the side effects were too much for me, and I couldn’t convince by local pharmacy (I live rurally, there is only one pharmacy) to order in another brand.

    • thesmallc says:

      Marg, you have to do what feels right for you. If you ever want to try a different brand, I am sure it’s not too late. I also find multiple pharmacies have different distributors and you might have a better chance trying different locations. I am sorry you had a bad experience with Tamox. cancer treatments aren’t easy. I wish this wasn’t the case. xo

  6. Cheri says:

    I’m experiencing the same issue with Teva generic Tamoxifen. After reading your post, my pharmacist ordered the new manufacturer’s code. Unfortunately, when I read the bottle it was not Teva, but Activa generic Tamoxifen. Evidently both Teva and Activa generic patents were acquired by Mayne Pharma. After numerous calls, I was given the correct NDC codes for the Teva generic 10mg(I take a split dose). Unfortunately, no pharmacies are able to access it. I’m now stuck with two brands that debilitate me. I’m currently calling wholesalers as per Mayne Pharma. I’m ready to stop taking the med altogether.

    • thesmallc says:

      Cheri, I am so sorry. Please try as many pharmacies as you can. Some pharmacies, although they are the same name, work with different distributors. See if you can speak to the Manager and ask that they try to order it for you. Try private pharmacies too. I am about to run out of my Teva soon so I am going to contact the same pharmacy that got the refills for me, to make sure they order it in advance. Try asking your Onco for help — perhaps his affiliated hospital can order it through their pharmacy? You shouldn’t have to go through this stress. I wish you good luck! xoxo

  7. Brenda Reineke says:

    Thank you for posting this. My pharmacist actually has a bottle of the Teva brand on his shelf and I am going in to get it today. I have been on the Mylan brand for 10 months and feeling terrible. After reading so many posts of women who have switched to Teva and not having as many side effects has given me hope. I pray this is the answer for me.

    • thesmallc says:

      Brenda, I am so sorry you are dealing with the side effects. It appears that many women do so much better on the Teva than other brands (and of course, there are those who don’t do too well on the Teva either). I say give it a try and see if the side effects are less harsh. I wish you good luck. I have a feeling this will be a better option for you. xoxo

  8. drugopinions says:

    I am sorry to hear about your experience with brand switching. The pharmacist you dealt with should have been more understanding why a specific brand is more important for you. I also want to give you another perspective – the drug shortage has not been easy for pharmacies. Constantly, drugs are listed as in shortage or discontinued, forcing pharmacies to look for different brands to ensure there is no interruption to patients’ treatments. It can be quite stressful and hectic and when we have secured at least a different brand to meet the demand, we are already feeling more relieved. I have to admit that many pharmacists including myself have been taught that drugs made by different brands are “equivalent” if they pass bioequivalence test. But you are correct, they may be using different fillers and it can be problematic for some individuals.

    • thesmallc says:

      Thank you for your perspective.I understand pharmacies go through some challenges too. And perhaps they are not been told the full story. I’ve also been concerned about why these drugs get “discontinued”. Recently I read some articles about quality control when it comes to outsourcing the production of these drugs (TEVA is outsourced), which will explain why there are less side effects — this affects our outcome. I believe if this information is accurate, they should make it available to everyone, including pharmacies so they are able to inform the patients and make a decision about not re-stocking these drugs. And the other issue has to do with processes. It would be helpful if pharmacies alerted their patients in advance (not the day they pick up their refills) so they can consult with their doctors about other options. But I understand the information can vary from day to day and pharmacies want to allow enough time for the drug to be available to the patients. The part that frustrates me is that no matter the route, the patients are the ones who suffer the consequences one way or the other. And of course, it isn’t the pharmacy’s fault. It is the business structure. And did I mention sometimes I am a cranky patient (thanks to Tamoxifen)? Thank you for stopping by.I’m looking forwarding to reading your blog. xoxo

      • D.Moore says:

        I’m soo glad that I found this blog. It is soo helpful. Actually, I had the opposite to happen to me. I have been taking the Mylan brand of Tamoxifen for almost a year. It will be a year next month. Well about 3 months ago, I went to pick up my RX and they had filled it with the Watson brand, of course I didn’t find out until I got home. Of course I was furious…so I called the pharmacy and I was told that I couldn’t bring it back. I called the corporate office of said pharmacy and explained that I was given a RX and not even consulted about the manufacture change. Needless to say, I received a call from my local pharmacy indicating they would get me my Mylan brand. I went a couple of days later and they had it in. However, every since that incident, I have to be sure that I tell them I want the Mylan brand. It is even on my record, Mylan only. However, just this week when I picked up my RX, it was the TEVA brand. I was also told by the person at the counter, the pharmacy ordered it, but TEVA is the brand that was sent. She also told me “its the same thing”. I did not want to argue or be rude, so I simply took the TEVA. But I did say that it would be the last time I refill my RX there unless they can guarantee Mylan brand. I understand the pharmacy wants to make sure a patient has their meds in a timely manner, however, common courtesy would be to let the patient know, BEFORE the RX is picked up. Everyone is different and the fillers may not react the same or with some other meds you may already take…hence “accidental” overdose. After reading the TEVA bottle, I realized it is made in Israel, which cause me some pause, so I started to do some research and this is how I found this blog, which I am very happy I did. With what everyone has been saying. I’m going to give the TEVA a try for a month to see if I have any adverse side effects. When I see my doctor in the next couple of weeks…I will also ask her thoughts on the various manufactures.

      • thesmallc says:

        Hi, thank you for stopping by and for reading/commenting on this post. I am glad you find it helpful. I realize very few patients are aware about the different Tamox brands and how each one can affect a patient differently. And usually, we don’t read the labels because we trust we are given the “same” drug(s) we’ve been taking. If you react well with Mylan, I would stick with the brand, but more and more I see women tend to be better with Teva (in regards to the side effects, which I also question). I didn’t even know this until I started to take Mylan and felt like fainting a few times (scary side effect I must say). Like you, I now go to the pharmacy 2 weeks in advance to make sure they stock my brand (which is also noted in their system). However, recently, I was given a bottle that read “Actavis” and of course I asked the pharmacist. She show me the Teva bottle and confirmed the code on the pills were exactly the same as the pills she had given me. I asked her, “then how come you label the bottle something else????” She said it could be an error by their system. But I did confirm the code on the pill I was given were the same as the Teva I had at home. The things we go through, right? Who said we’re done with with bc? Anyway, just glad we both have the option to take something, even if that “something” causes us stress and problems. It better be doing its job! Good luck with everything and please stay well! xo

  9. Susan says:

    Teva Tamoxifen was the only thing I could tolerate for five full years. My oncologist told me to half dose them too. I got to stop 2 years ago and recently did a test that helped look at my tissue and determine if 5 more years would give additional benefit toward reducing the changes of a distant recurrence. I was so excited it came out that I didn’t need the extra five years. While my oncologist and I both agreed the data still is out on predictions, for my specific case it helped as there was no test and I did get a local recurrence 2 years later after heavy chemo.
    To the drug companies I have a long and complicated post to write as I am furious with the costs of drugs and the fact that we allow drug commercials on TV and print in the USA and New Zealand. No where else. Only about 1/3 – 3/8 of money in big pharma goes to research and development. They are making the same drugs and ruining the old ones with patents, trying to get rid of the good and dependable ones. Hence, bye, bye Teva tamoxifen and hello. patented tamoxifen – They will give you a coupon and it will be the same formula, slightly changed. They are messing with us for profits! Am I wrong?

    • thesmallc says:

      Hi Susan, I remember you mentioning about your recurrence (so sorry). I am guessing this happened after you had stopped Tamox? I am aware there are some tests to determine if some patients are the right candidates for Tamox. I asked for it and my Dr. refused to have it done. I donated my tissue for research so I am wondering if they can go back to check. I am not too familiar with what’s going on with these pharmaceutical companies, but after this new development with Teva, I’ve read some interesting articles about quality control and monopoly-type-of-structures. I am sure profit is their first priority and we, the patients, end up paying the price. I’d be very curious to know your thoughts about this issue so I look forward to reading your article. xx

  10. Cheri says:

    I’m sorry I didn’t follow up my post from February. The Teva patent was sold to Mayne Pharma. I spoke with two departments there confirming the NDC code for the Teva tamoxifen , they also purchased Activa’s patent, so I wanted to be clear. I was also referred to the distributors Mayne Pharma contract with but really didn’t need to call them. I ended up calling smaller pharmacies and asking if they used those distributors, if they did, I asked them to check the new NDC code to see if they could get it. One got it for me within two days! My prescription is written Teva only. However, since the patent was sold, I base it on the NDC code only! The old Teva is now called Mayne Pharma. The correct NDC code, which I got from this discussion, is 51862-446-30. This is for 20mg 30 pill count. We all need to work with our pharmacists. If they won’t or can’t assist you, find someone who will. There’s hope!

    • thesmallc says:

      Hi Cheri, great news! I am so glad you were able to get your TEVA back. I would go back to the pharmacy two weeks before you have to get your refills to make sure they stock them for you.I just did that at my original pharmacy and now they are getting the pills from Mayne, which is encouraging. You stay well!! xx

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  12. Susan says:

    Hi Rebeca- I got a recurrence about a year and a half after I finished chemo (ACT). I was so sick, couldn’t stop the nausea, tried hormonal therapy but could not tolerate it. I ended up taking tamoxifen and cutting the dose as per my onc’s instructions and tolerated it.
    So the test I took is called BREAST CANCER INDEX recently going back to 11 years of saved tissue. Since the test is looking for distant recurrences it made me feel so much better as I worried I got the recurrence because I couldn’t tolerate hormone therapy years earlier. It was a huge relief to get results that told me 5 more years- no additional benefit! I am also so much better off the hormone therapy and decided even if the test is wrong I believe it and can enjoy my QOL no matter what’s ahed.
    To find information about the Breast Index Test go to: https://www.answersbeyond5.com/is-bci-for-you
    I was also impressed that the company took care of all the responsibility for working with my insurance and assured me I didn’t have to pay whether they pay or not. I wish they would pay my other medical bills!

    • thesmallc says:

      Susan, I’ve been wanting to get that test done for a while but my Onco refused. I am not sure why. I see her again in a few weeks and will ask her. I also remember asking her for a test that confirms how my liver processes (metabolizes?) Tamoxifen (different test?) and she said nope because the test is not accurate.I would love to know if this pill is making a difference or not as the collateral damage is brutal. I donated my tissue so I wonder if they will be able to go back and confirm the benefits of taking the pill. Glad you got some answers to help you make a decision about your treatment plan. And I’m also glad some of your expenses were covered (we know how costly cancer treatments can be! Ugh!). I wonder if there is a difference in outcome if the person carries a mutated gene. I assume the test only analyzes the biology of the current tumor (will read about it to learn more). Thank you for sharing the link. Stay well, Susan. xo

      • Susan says:

        Call the company up and ask them if you cab get it from your oncologist or someone else. My oncologist was clear about the risks but I feel better whether it’s right or not. The other test is CYP2D6 and about tamoxifen metabolizing.

  13. bethgainer says:

    Hi Rebecca,

    I’m glad you got your brand of Tamoxifen back. I had absolutely no idea that there were different brands of this drug. Good for you for advocating for yourself and helping others who might be having the same problem you had. I was never put on Tamoxifen, but I had aromatase inhibitors for a while and, yes, I do know the dependence we patients have on our medications. It’s a frightening thing when there is any change to our medications.

    • thesmallc says:

      Beth, it is insane what we patients go through. And this doesn’t only apply to cancer medications but all the other drugs other patients depend on. I am also concerned about what gets communicated to us. I feel it is someone’s responsibility to inform the patients about how changes may impact their physical state. I don’t like feeling like a tool. As much as I hate taking this pill, I am glad I got a brand that works for me…sort of. I hope you’re well, friend. xo

  14. Deb kirker says:

    I was on Teva brand tamoxifen for 7 years . Teva bought Actavis Generics . Teva stopped making their brand of Tamoxifen. This is all the information I gathered thru research and asking small independent local pharmacies. I was force to switch to Actavus inOct 2016 no Teva could be found to buy. Jan 6 2017 a tumor popped up in my body and spread everywhere I now have stage 4 breast cancer and I blame that switch!!!!!

    • thesmallc says:

      Hi Deb, I am very sorry you’re facing this diagnosis. I am curious to know the code # on the actual pill you were taking. Is it 93 (top) and 782 (bottom)? It should look something like this: https://www.drugs.com/images/pills/nlm/200000274.jpg. I recently got my refill and the manufacture says “Actavis”, however, I was shown the Mayne bottle where they keep all their Teva pills and all the pills have the same code # as the Actavis I was given. Regardless of the brand name, the # on the pill should be the true identifier. How long were you on this pill and what stage were you originally? You can send me a private message if you feel comfortable that way, at thesmallc@yahoo.com. Please try not to be too hard on yourself. You did and continue to do all you can. I hope you get the best possible outcome with your treatments. xoxo

      • Deb k says:

        WPI/2233 watson Tamoxifen citrate but its actually the Actavis brand not Teva
        Imprint:
        WPI 2233
        Strength:
        20 mg
        Color:
        White
        Shape:
        Round
        Availability:
        Prescription
        Drug Class:
        Hormones/antineoplastics
        Selective estrogen receptor modulators
        Pregnancy Category:
        D – Positive evidence of risk
        CSA Schedule:
        Not a controlled drug
        Manufacturer:
        Watson Pharmaceuticals, Inc.
        National Drug Code (NDC):
        00591-2233
        Inactive Ingredients:
        croscarmellose sodium
        lactose monohydrate
        magnesium stearate
        microcrystalline cellulose
        pregelatinized corn starch
        Note: Inactive ingredients may vary.

  15. Deb k says:

    Stage 2b 2009 brac2 . Ovaries out . I did chemo & radiation. Double Mastectomies. I was in great health working. Walking 2 to 3miles a day. Until that switch . By Christmas I had pain in chest and tired. By January 2017 -I had vocal cord damage from tumors. That switch was the cause teva brand protected me better. Tamoxifen saves lives! They never should have let nolavdex stop making brand name Tamoxifen.I would have choose that.

    • thesmallc says:

      The manufacture is Watson Pharmaceuticals, Inc. hence the different code on the pill. Technically, the switch should have not had an effect on the active ingredients. What does your Onco say about this? I am so upset for you. I wish there was more communication about these drugs we depend on. Again, I am not sure the switch would have caused your situation but I know for a fact the side effects are different depending on what brand you take (due to the fillers). I am going to contact Mayne again to ask more questions about their acquisitions. Last time I reached out to them, they were going to acquire Actavis. All these changes are all over the place and it makes me lose confidence. I assume you stopped taking tamoxifen but I hope there’s a great treatment plan for you and you get good results. I am available to chat more, just email me. I wish things were different. xo

  16. Cheri says:

    From my research I have learned that Mayne Pharma acquired both the Teva and Actavis patents. So initially I was given the Actavis but refused to take them. After speaking to Mayne Pharma and getting the correct NDC code, the one in the original post, I got a list of Mayne’s distributors. The next step was to cold call smaller pharmacies, not the big chains, and find out what distributors they use. This got my Teva, now called Mayne, back. That’s not to say there’s no guarantee contracts won’t change, so I give my pharmacist five days notice when refilling. I also just saw my onc at Dana Farber, and he wrote my script by hand putting the required NDC code on it. This way if anything changes again, the pharmacy can track it down. I’m going through this with other medications too. Very frustrating. Unfortunately, I do not have the list of distributors.

    • thesmallc says:

      Cheri, that was nice of your Onco to include the NDC code in the prescription. Providing the NDC # to the pharmacy gives you the best chance to get the pills you want. I suspected Mayne acquired both Actavis and Teva. Recently, I received the right pills (with Teva NDC code), but the bottle said Actavis. Wondering if they will keep everything under one name now? So confusing. As long as the NDC # is the same as the Teva brand, I’m all good. Wishing you luck and please stay well. xo

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