Aramotese inhibitors - any with less side effects?

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JoniB
JoniB Member Posts: 346

Hi - will be starting and AI but don't know which one. I was reviewing all the posts showing all the side effects and I am getting even more depressed than I was before (began seeing a therapist this week as I am having difficulties dealing with my recurrence after 8 years). I neglected to ask my new MO which AI he was considering for me (I will be discussed at this week's tumor boad - not sure if this will be one of the topics). However, do people seem to have less side effects from one over another? Any difference between name brand and generic? I am 52, on the thin side, and went through menopause 8 years ago. I know there is a lot on this site but it is difficult to sift through all the information. Thank you.

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  • SissyK
    SissyK Member Posts: 22
    edited April 2016

    When it was time to move from tamoxifen to an AI, my surgeon/oncologist started me on Arimidex, saying it was the one most studied and the one he started all his patients on.  I couldn't tolerate its side effects, so we switched to Femara.   It has been a couple of years, but if I remember correctly, I was told the chemical make-up of it is quite different from the other two AI's.  He had several patients who couldn't tolerate Arimidex who did very well on Femara.

    Some people on the Femara topic have said they do better with certain brands versus others/generics.  I've not experienced this, nor do I have an option for picking the manufacturer of my Rx.  With my insurance, I have to use a mail-order pharmacy and take the brand they send me.

     We are all so different in our reactions to various drugs.  I would listen to my doctor and try the one he prescribes.  Time will tell if you can take it or if you need to change to another one.  Best of luck to you.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2016

    I took Arimidex for 5 years (the last couple with the generic). I didn't have any trouble with either of them (or notice the difference between them). Everybody his different, so what works for one might not for another. I would give whatever you start on a couple months so your body can have an adjustment time; but if you do have trouble at that point, don't be reluctant to try something else. Best of luck!

  • LoveJoyPeace
    LoveJoyPeace Member Posts: 16
    edited April 2016

    JoniB,

    Like you, I'll be starting AI. Let's share our experiences.

    I've been prescribed Letrozole 2.5mg (Teva). My MO wants me to start the medication whenever I 'm ready. I had LD flap surgery on March 2nd and recovering well. I plan to start Letrozole tonight and take it consistently at 9pm every night.

    I'm already getting hot flashes from Lupron shots. Although it's annoying, it's manageable for the most part. I dress in layers and constantly take off & put on clothes.

    It seems that joint & muscle pain is a another common side effect of Letrozole/Femara and that exercise is the best way to combat it. I hope I get approved (from plastic surgeon) to start exercise soon.

    I'm anxious about starting AI because of the side effects that I may have. On the other hand, I look forward to completing the 5-year hormone therapy. The sooner I start, the sooner I'll be done. Hopefully, I will be done with this breast cancer journey on 4/2/2021 (5 years from now). Counting down starting today.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2016

    Reading the AI threads can be depressing because they often involve women who are looking for solutions to the side effects they have been experiencing. I'm on Aromasin (and Zoladex) because my MO thought my insurance would cover it (long story). I'm on generic Aromasin (much cheaper), and have had two main side effects: 1) moodiness (take Celexa for that) and hot flashes. I've been on Aromasin a year, and my hot flashes have declined significantly in the last four months or so. So, even if you get side effects at first, they may wane over time.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    sissy - Femara and Arimidex are similar, it is Aromasin that is different - it has a steroid component.

    I would advise anyone who is just starting aromatase inhibitors to have a baseline DEXA scan so you know your current bone density situation - one of the unfortunate potential side effects of AI drugs is bone loss, not everyone experiences this, but it is good to know where you are starting. Joint pain and stiffness are common, but I would advise to keep moving - it helps a lot. One thing to keep in mind, you can switch generic manufacturers, if possible, or switch drugs, and end up finding the drug or maker that works for you with the fewest side effects. Often it is not the drug itself, but the fillers and dyes that cause some SEs, and it may take some experimentation to find the best fit. Good luck!

    lovejoy - I have taken Femara, Teva maker, for the last two years - no problems. I have also heard good things about the Roxane brand as far as fewer additives.

    As ET said above, sometimes initial SEs wane - I have seen some who experience some mild nausea for the first couple of weeks then it disappears, sometimes you can be on one of these drugs and it will take a while for a problem to surface, which was my experience. I was able to switch from Femara (Mylan brand) after six months to Arimidex due to the development of a trigger joint in my thumb on my dominant hand, did fine for two years and then developed the same issues as I did on Femara. I switched back to Femara since my MO likes it better for Her2+ patients. I ended up with Teva brand, have been on it for two years and just developed the same issue about two weeks ago, but I only have two months before I complete my five years, so I plan to just hang in there.

  • JoniB
    JoniB Member Posts: 346
    edited April 2016

    Thanks to all for your replies. Are any of the AIs associated with less hair loss? Does Biotin help?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    I will be going on Tuesday to discuss the AI choices and side effects.. I have decided to not do chemo since it would only afford me a 3% difference in recurrence rate ( 12% to 9 %) and I don't think that small a difference is worth the side effects. I fall into the intermediate range on the oncotype scale so they is no evidence to suggest whether or not chemo would be of benefit to me I am going on vacation on April 30 for 6 days so I will be starting them when I come back... Don't won't to start it beforehand and be in the middle of the ocean if any problems arise... I also will be meeting with my RO to discuss treatment which will also begin upon my return..

    Are there any specific questions I should ask before being prescribed anything? Do I need any blood tests ( for estrogen levels) or to check for anything else? I had a bone density test about a month ago so do you think that is sufficient?

    Any input you can provide will be greatly appreciated...

    Thank you!

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2016

    Lots of good info and advice from previous posts. I was on Arimidex first and now have been on Femara almost two years. One thing to remember is that people tend to post more when they are having difficulty, then when things are going well.

    Nachou818,

    No blood tests needed with any of the AI's. I can't think of any specific questions to ask, other than those you'd normally ask when starting new prescription meds. The one thing you might want to monitor yourself, is the time of day you take it. I take all my meds before bed, including supplements. Nothing effects my sleep, but I know insomnia

  • bescott
    bescott Member Posts: 2
    edited April 2016

    I'm so glad I found this string! I'm also starting AI soon, but all I could find were people talking about how horrible their side effects were from these drugs. It's been pretty disheartening thinking that I would still have such a long way to go with horrible side effects (My Onc says I should do 10 years of hormone therapy.) I handled my AC and Taxol chemo pretty well, so I'm hoping that the AI isn't much worse.

    Thank you to all of you who wrote about your positive experiences. It's nice to hear that things might not get any worse!

  • bgrabowski
    bgrabowski Member Posts: 2
    edited April 2016

    I have tried Aromasin and Tamoxafen and both have horrendous joint side effects. Has anyone found one that does not do this? I feel like an old woman getting up and down and in and out of a car and I am only 56!

  • muska
    muska Member Posts: 1,195
    edited April 2016

    Ladies, my first advice to those who are about to start AIs is to stop reading the threads about side effects until you start experiencing any. Yes, about 25% I believe have some degree of stiffness or joint pain (you can find exact numbers for the various side effects on sites like drugs.com) but that means that 75% do not experience joint pain or stiffness serious enough to report. Most of us do reconstruction surgeries that have much worse side effects percentiles.

    I was started on anastrozole (generic for arimidex) a little over two years ago. I take a generic manufactured in India. I have no significant issues to report. Regular exercise takes good care of stiffness and helps with muscle and bone strength. Everything else - dryer skin, some vaginal dryness - is a result of lack of estrogen in the body that is the ultimate goal of all these drugs. Hair looks great and I keep getting compliments from my hairdresser. I changed my hair routine though, in the past I used to shampoo every morning, now I shampoo only once or twice a week but use a good natural hair conditioner every day.

  • JoniB
    JoniB Member Posts: 346
    edited April 2016

    Thank you, Muska. Great advice - I have to stop worrying until I have something to worry about

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    bgrabowski and besott, we welcome you warmly to our community, and appreciate you sharing your experiences!

    Warm and gentle hugs to all,

    The Mods

  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2016

    MY hair grew and became more luxuriant on Aromasin..........I am back on that as it is the best of the 3 for me, but I am super sensitive to many drugs..........I plan to be on this for a few months and then hopefully nothing

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    I agree with Muska's post: most who have negative side effects WILL post here, looking for help to reduce them. Your MO will rx the one that fits your bc profile to start.

    I did okay on tamoxifen and then a year after chemo-pause, when my estrogen levels had dropped and stayed dropped, my MO and I decided it was time to move to an AI. I took Arimidex and had some dramatic negative side effects. After 1.5 years of that -- I knew i had to give the side effects a chance to resolve, because sometimes they can--I went back to my MO for my regular check up, complained (and threatened to quit AIs completely--that got her attention) and we moved on to Aromasin. So far so good there, and I've been on it since Sept 2015.

    Either way, I guess, I'd rather have the SE from these drugs than from BC itself. But I had + nodes, and am considered high-risk anyway, so I'll be on some kind of AI for quite a while. I'm okay with that. I'm grateful to be alive and that I've got some kind of tool, even if it's not a complete guarantee, against a potential recurrence. At least I will know I tried everything and won't have any "look-back" kind of regret if something bad happens in the future.

    Claire

  • Calcon
    Calcon Member Posts: 21
    edited April 2016

    I have been on Arimidex in the past (3 years), and now on Aromasin (<1 year). Aside from a bit of stiffness - which is helped with exercise - I have not had any problems. Just be sure to watch your cholesterol as this can increase with AIs.

    I don't think my hair growth was really affected while taking Arimidex. Hard to say now that I'm on Aromasin, as I feel the chemo drugs along with Herceptin have had a greater impact and have drastically slowed down my growth.

    2nd everything SpecialK has said.

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