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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • cwayman650
    cwayman650 Member Posts: 63

    I started on arimadex and the se's kicked in at the 3 month mark. Joint pain, dizziness, and really bad brain fog. I finally went to my mo and he stopped it. After 3 weeks off, (I felt better after just a few days. My mind was clear. I didn't realize how bad it was till then), I started on aromasin. It's been about 6 weeks now. At first the joint pain started, but not as extreme as before. About 2 weeks ago, I realized that my joint pain was much better. My brain fog didn't return. I told my family and coworkers to tell me if it starts coming back. When the weather is heavy, like it raining, or going to rain, I get a bit more achness, but I can live with it. I hope this helps anyone afraid to try a different ai.


  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    That's great that the SEs for the Aromasin have diminished! YEAH!!!! Hope to see you in 2 weeks!! HUGS!

  • mysunshine48
    mysunshine48 Member Posts: 915


    What is the difference between Arimisin (not spelled correctly) and Arimidex? I am so confused about all of this

  • mysunshine48
    mysunshine48 Member Posts: 915


    aromasin

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Mysunshine48 - here's a link on BCO: Aromatase Inhibitors Maybe this will answer some of your questions. Check out the links to each of the 3 AIs and maybe your questions will be answered. Each is slightly different so if one bothers you, another might not. Will you be going on an AI or Tamoxifen? I've been on Arimidex for 9 months with no problems at all. Many women do not have problems or they are so slight to not outweigh the advantages of the AI. Obviously, some women do have awful SEs. But all seem to agree that it is definitely worth trying them.

    HUGS!

  • florida2015
    florida2015 Member Posts: 46

    Getting nervous as it is getting close to end of rads and supposed to go on Armidex but will talk to my MO about it and also TEVA brand I am reading about on this board and the Levi.. medication. I am really nervous after reading some of the stories on SE's although I know its been okay for you Peggy.

    Is thinning hair common with these drugs and join pain, does it occur in some people. I am also worried about hot flashes - I am 58 and went on HRT to get rid of those flashes at age 50, so hate the idea of having them again.

    Also the moods and being down I read about. That I don't need -- I sort of run depressed a lot to begin with and had tried some antidep's with no success in the past.

    Need a pep talk to even try these meds, but know if I don't I am increasing changes of a reoccurrence.


  • ruthbru
    ruthbru Member Posts: 47,540

    I did 5 years without problems. Felt great, was great. Don't anticipate having bad side effects (if you are going to have them, they will find you). Just take it like you'd take any other pill & get on with your day.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Florida, I suspect you will have hot flashes - you ARE still rather young. They may not be as bad as they were before you were on HRT. Have you been off HRT for long? Have you been having hot flashes? And it's possible you won't have any or they might be a flush here and there.

    Don't anticipate that you will have ANY problems on Arimidex. (Good for asking for the Teva brand). Many ladies don't - like me. As I've said, women tend to post here when they are having problems, seeking solutions. Those of us without problems don't tend to post.

    Thinning hair goes with age IMHO. I haven't noticed any difference.

    You really should talk to your MO, PCP or NP about how you are feeling. Perhaps there is an anti-depressant that you CAN take that would help you. Depression is rather common with BC patients. Make sure you know which ones you've tried. If they were the newer ones, maybe you need something old school or vice versa.

    Did you have an Oncotype test done? What was your score? It should also include how 5 years of Tamoxifen would decrease your chances of recurrence. They always use Tamoxifen as the standard even when an AI is appropriate.

    Try to stay positive!!! Every pill you take, remind yourself that you are doing all you can to make sure the cancer never comes back. That's why we all take it. And also tell yourself that most women do NOT have SEs!! I think it really helps.

    Listen to Ruth. She know what she's talking about!

    Take care. It will work out. HUGS!!!

  • TwoHobbies
    TwoHobbies Member Posts: 1,532

    Florida2015, you don't know what SEs you'll have until you take it.  Some people do seem to have really bad side effects.  For me, it has been tolerable, and I'm not even surewhat piece of my treatment caused what.  We can all certainly relate to wanting to feel good and just be able to not take anything.  I have definitely not had any thinning hair issues.  In fact I am losing less hair now than I did three and four years ago. I do have some pain in my feet and legs by the end of the day.  I have upped my exercise and its not that annoying. If I feel bad, I take some aspirin and get out my heating pad.  I do have hot flashes but I'm also on zoladex so I don't know how much is each.   

    Which brings me to my question.  Anyone else take Effexor here?  My doc gave me a script and I took it two days and I was so totally brain fogged that I decided I could not do it.  I could not function at work at all.  She said try it for two weeks, but it just isn't possible for me to be "out of it" for two weeks at work, or I'll be out of a job!    Does this dissipate or will another antidepressant work differently? 

  • florida2015
    florida2015 Member Posts: 46

    Thank you Ruth and Peggy that helped

  • denise-g
    denise-g Member Posts: 353

    So I had my 6 month checkup last week (almost 3 years out) and told my Onc I was doing better on Teva brand of Anastrozole.  He got this concerned look on his face and IMMEDIATELY, and I mean immediately ordered the Estrodiol blood test which Univ of Michigan sends to Mayo Clinic to check my hormones.  He said sometimes they find certain manufacturers don't work as well as others and because my pain was less, he wanted to make sure it was still working.

    Will let you know!

     


     

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    You're welcome, Florida. I'm glad. Just take the pill and go on living!

    TwoHobbies, I have not taken anti-depressants but my hubby has. He seems to have bad reactions to all of them. I believe he has not taken any really old ones. He has no problems with Valium. I can see why you wouldn't want to give it two weeks. When you are working you cannot be in a fog. I hope you find something that works for you. Keep at it!!

    HUGS to you both.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Well, Denise, that certainly is shocking! You're doing well and he's worried because you ARE doing well. I think I missed the logic in that. Good grief. The Teva brand is working better because it IS better. I'll be interested in hearing the results of your test. Wonder if anyone else's onc has gone berserk over such a positive statement?

    HUGS!!!

  • spookiesmom
    spookiesmom Member Posts: 8,178

    Yeah, how do you tell your Indian doc you don't want to take a med from India? LOL, but not really. Would be my problem.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    SpookiesMom, tactfully. I'd just say that many women experience fewer side effects on Teva and you prefer to go with that one. Play dumb that you know where the current one is made :) HUGS!

  • spookiesmom
    spookiesmom Member Posts: 8,178

    I haven't had this convo with her. Did with a pharmacist though. He was understanding. Was the one who told me about the FDA inspections there, how it's all cleaned up, they pass, then back down the toilet.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Now, why doesn't that surprise me? BTW, I didn't have any conversation with my MO on which variety to have. I just told the pharmacist that I wanted Teva only and to note that on my record. As long as its generic my insurance doesn't care.

  • StrongEnough
    StrongEnough Member Posts: 18

    TwoHobbies, I took Effexor to treat Arimidex-triggered depression. I had 5 hours of severe brain fog, nausea, and slightly blurred vision every single day after starting Effexor. The good news was that the depression lessened and I had no more hot flashes, but I could NOT handle the side effects. I lasted 6 miserable weeks.

    Warning, you have to taper off the drug very slowly. A NP told me to taper off over 3 days and I ended up with severe vertigo and vomiting. My PCP and MO and ENT all said that it was due to withdrawal symptoms from the Effexor. I don't have the nerve to try another antidepressant!

  • auroaya
    auroaya Member Posts: 784

    Two Hobbies and Strong enough I am sorry you had a bad experience with Effexor, I've never been on it but I take Cymbalta 60mg which is an antidepressant also known to help with joint pain and take Gabapentin, between both my depression and hot flashes is well controlled, I know it can be scary to try other medications but I find that Cymbalta does not cause any foggy brain issues. Talk to your MO and maybe seek help from a psiquiatrist specially one that treats cancer patients. The last ASCO recommendations state that all cancer patients should be evaluated for depression and treated if needed. Hope you find what works for you.

    Aurora

  • justaveragejane
    justaveragejane Member Posts: 5

    Teva is an Israeli pharmaceutical company. Walgreens is ordering Teva for me every month and so far three months in and minimal side effects. A little stiff and a few hot spells at night but that's about it. Hopefully the darn stuff is working!

  • suladog
    suladog Member Posts: 837

    peg,

    My mo and I are hoping for no SEs, in fact I get the idea he'd be concerned if I was having problems. Lack of pain as a cause for concern, I don't get?

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Suladog, my MO is the same. He doesn't expect me to have SEs. I find that concern for lack of pain very strange.

  • brooksidevt
    brooksidevt Member Posts: 1,432

    Suladog, my onc is also concerned about pain and, in fact, any side effects from the AI. My take on this is that he really wants us to stay on the thing and he knows we have a better chance of sticking with it if side effects are minimal. From the beginning he has been very clear that he wants to hear about side effects and that there are tactics that work, including taking a drug holiday and switching to another med.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    It was Denise-G's MO who was so frantic over her lack of pain that he ordered testing of her hormone levels. It's the most peculiar thing I've ever heard. You'd think he'd be jumping up and down for joy that the Teva brand was working for her. Go figure.

  • sybilskelton
    sybilskelton Member Posts: 22

    My doc told me that the side effects of these drugs correlate to effectiveness. I think that was supposed to reassure me, but apparently there is statistical evidence that the more SEs you have the better it's working. That would probably account for the doctor's alarm over the lack of side effects and him wanting to conduct tests to verify the drug's efficacy.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    SybilSkelton, it would appear my MO doesn't agree with that since he told me to NOT expect SEs. Seems very strange.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    My MO said I MAY get some se's from it. If he mentioned what kind, I don't remember.

  • duckyb1
    duckyb1 Member Posts: 9,646

    Sybil.............heard the exact same thing...........not from my MO, but several people I know said to me.......well if you have those SE's it must be working..............I thought....that's odd......why say that.....was told her MO said "at least we know its working, when she told him she didn't know if she could handle anymore of the SE's...........she said "good news its working, but that isn't helping me with SE's"....

    I was told there were things I could take for the SEs I was having........something for the Neuropathy[, something else for the "blue days", something else for the aches and pains..............I thought....sure take another pill to cure the problem your having with the pill your taking.and then try dealing with the Se's of the new pills...............its a Catch 22....your damned if you do, and damned if you don't.

    Oh and "YES".......my hair did thin out and I mean a lot............I had thick, thick hair..........not anymore......I correct that.......since I stopped the AI......my hair is growing thicker........I can feel the little wisker like stubble when I run my finger through myhair.....so it is a SE's.....but that oen I could handle.I still had plenty of hair left ;but you should have seen the floor, sink, and brush after I did my hair.......

    It tok 3 years before the Neuropathy began.....thank God......the dizzinesss was almost immediate...........the being off balance was the worst...............belive me............I tried, and I tried damn hard..........I had all of these SE's for the entire 3 1/2 years except for the 1st 3 months...........

    If you have had no SE's consider yourself blessed.........because more then 50% of us get them.....some mile some, moderate, and those (and there are many) who live in pure hell everyday.............

    None of us want a recurrence, and all of us......each and everyone has to at least try to take this "devil pill"..........but these "asshole" Dr.s who say " I don't expect you to get SE's" either are delusional, or have not read the package insert...................

    My daughter's next door neighbor just finished Rads........they gave her literature on the AI's.......she saw my daughter outside thehouse after coming home.........she told her "I am so scared of this pill they want me to go on....after reading about it......I'm not sure I want to take it...........

    She asked my daughter how I did..........my daughter was honest with her and said "not good".....but my Mom stayed iwth it for 3 1/2 years, and I watched her struggle and get worse from day 1.................and they she gave her the big "BUT:]

    My mother would tell you........"fill the script......ask for Teva.........take the pill, and give yourself every chance possible to stay with it........if you get SE's.......do it for as long as you can.............each year you do helps...........you may not be one of the 50%......

    Is there anyone out there who has BC, who really thinks we with SE's want to stop this and possibly reduce our chances of survival...........thank God everyday that you are not us.............................

    ALWAYS GIVE THE PILL A CHANCE...............NEVER GIVE UP WITHOUT TRYNG...........BEST ADVICE I CAN GIVE..............

  • farmerjo
    farmerjo Member Posts: 239

    I'm not sure about pre-existing arthritis and AI's. Our bones need estrogen obviously, so it makes sense the less estrogen, the more pain in arthritic patients. I had pre-existing lower spine arthritis due to scoliosis, and Aleve usually took care of that...no so with the Arimidex.

    I took HRT for 17 years, the lowest dose, once a week instead of twice a week, so I was getting a very small amount. That helped explain why my Dexascan at diagnosis showed osteopenia.

    Below are the results of my hormone tests done one week after stopping hrt:

    Estradiol   <6.0       Range is 0 to 30 pg/mL

    FSH 190.6              Range - After menopause: 25.8 - 134.8 mIU/ml    (The higher the number, the more menopausal)

    LH 62.1                   Range -  After menopause: 14.2- to 52.3 IU/L         (The higher the number, the more menopausal)

    So I was off the charts for post-menopause from the get-go. I think that plays into the exacerbation of my arthritic pain on AI.

    When I was diagnosed with premature ovarian failure at the age of 39, my FSH was 127, LH 57.

  • ruthbru
    ruthbru Member Posts: 47,540

    Side effects don't have anything to do with how a drug is working; it's just that everyone's body reacts different when messing around with hormones. Think of being pregnant; some ladies sail through and have never felt better in their life, others throw up the whole nine months and have never felt worse....most fall somewhere in between. The babies turn out the same, regardless of how their mother felt during the pregnancy.