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

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Comments

  • farmerjo
    farmerjo Member Posts: 239

    Hi everyone... think I'm going to chime in on this one. All the side effects I'm reading, anxiety, depression,  joint/bone pain...I am experiencing ALL of it and haven't started my AI yet (1st MO Friday). All my symptoms started when I had to cold turkey my hormone replacement therapy after 17 years. My symptoms are a result of estrogen depletion; plain and simple-I had no issues beforehand. So now I have to start an AI that will zap those remaining estrogen molecules...I simply cannot imagine.  I am going to request I start at 1\2 dose.  I'm already suffering. 

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Bravo, Ruth! Well said. I think you put into words what most of us feel. We want to do whatever it takes to LIVE!! Thank you. HUGS!!!

  • lago
    lago Member Posts: 11,653

    I agree Ruth.

    jilly59 if you find you are having issues with depression due to the AI get it treated. Best thing I ever did.

  • farmerjo
    farmerjo Member Posts: 239

    Lago- Check! Saw psych this morning and starting effexor. Fingers crossed!

  • SelenaWolf
    SelenaWolf Member Posts: 231

    Ruth... well said.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    I agree 100% Ruth

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,299

    Ruth,

    I agree! I've never done chemo but between Arimidex and Femara I have kept my MBC at bay for 4 years. I pretty much do what I always did and find ways to cope with the se's. I know that some may have severe SE's but most don't. Happy to be thriving at stage IV.

    Caryn

  • ruthbru
    ruthbru Member Posts: 47,709

    Hats off to you, Caryn!!!! ThumbsUp

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    I'll second that! Good going, Caryn!!!

  • Cee67
    Cee67 Member Posts: 43

    The antidepressants sound good. I always felt that I could use them for both mood as well as hot flashes from the AI's. I may not be able to take those...jury's still out but I saw a poster somewhere on here who says Effexor can be a struggle to get off of? Is that bc you have to keep taking more?

    I'm curious about antidepressants. Never was depressed til dx...but am concerned of difficulty getting off them. Is that a vaid concern?

    Also, pardon the maybe dumb question and if another has asked already I apologize. Writing this from my ER bed that I hope to leave soon. Had a bad stress reaction to things yesterday and caused a severe asthma attack. This screen is small please pardon typos lol!

    What is trigger finger? I see sime discussing this. Some talk about needing hand surgery?

    Is this *caused* by AI's or did they merely aggravate a pre-existing issue?

    It's been more than 5 wks since I went off 2 days of AI's and one hand is still not back to normal. My hands were fine before the doses and I do wonder if the person who mentioned I may be allergic to Ax instead of just being sensitive to it, isn't correct.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Cee67, I mentioned the possibility of allergies. In my own experience allergies can start immediately or within a couple days (took 3 days for my allergy to cipro to become full-blown). Of course, it is possible you are allergic to anastrozole itself, but it is more likely you are allergic to one of the fillers used. I don't recall if you said which brand (or brand name) you took. Many women have good luck on the Teva brand generic or possibly have to go on the name brand. You might check that out. Or try a different AI. So sorry that you had an asthma attack. An antidepressant or "tranquilizer" might be very helpful. Talk with your docs and let them know how stressed you are. You don't show in your public profile what treatments you've had and that might be helpful to us when we are answering your questions. If you could make them public, we'd appreciate it. Try to take a deep breath (once you can breathe again) and find something soothing/relaxing to do. HUGS!!!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Ruth....well said, and I agree. I never had pain from the saline, just some tightness as you mentioned. Only took a muscle relaxer once. Mine was strictly the needle injection point. I'm a baby, lol. I will say the pseudomona infection, subsequent removal of expanders and replacement, along with home based iv antibiotic infusions wasnt particularly fun, but I got to know my docs so well, and just loved them. And it meant so much to see all the people who came to the table to help. Gosh I have some funny stories. I'm just sitting here thinking about them. My PS is hysterical and we have laughed a lot through it all.

    Cee...I sent myself into panic disorder when first diagnosed. I was a mess. My NP, one of my best friends, immediately put me on blood pressure med, which had always been low, and an antidepressant, Cymbalta. she chose cymbalta as it has joint pain releieving properties and she knew I would be receiving taxol which can cause that. I had very little issue with taxol. Then, I started tamoxifen, as I was pre-menopausal. I had to quit taking cymbalta since there is an interaction. And, I really didn't need it anymore. Once things got going, I realized it wasn't quite as terrifying as I had thought.

    Then, I started with horrendous hot flashes. So I tried effexor. didnt really help for very long, so I weaned myself off. It takes about a month to totally get to zero in my opinion. I never went above the lowest dose. You can get some mild nausea and just feel kind of yucky, but the worst part is the weird brain zaps. Not really dizziness, just a sensation of kind of a zing. Kind of messes with your balance for a few seconds. Those last for a few seconds and happen sporadically. Not too fun, but not the worst.

    Somebody on one of the threads had a plan that I followed to wean off. It ultimately involved taking the capsules apart and reducing the amount of beads as you reduced. I thought that helped a lot.

    trigger finger is when your finger feels like it is stuck and doesn't really bend. Seems like a lot of people have that from an AI. I don't have it yet, just a joint issue that is very slowly getting better.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    I forgot to mention that when I was switched over to Arimidex, in about two months I had terrible joint pain. My doc said there was no reason not to go back to Cymbalta as It should help the joint pain. If your google arimidex and cymbalta, it pulls up a lot. It made an enormous difference for me. No joint pain at hall hardly and I figure the anxiety part cant hurt, lol

  • Cee67
    Cee67 Member Posts: 43

    Hi Peg and Fluff, thank you for the advice and suggestions. Already called and pharm will try to order Teva Ax for me. It's getting the nerve to try it that's the issue. The last time was agony.

    I'll look into the anti-depressants if I ever discover that I'm able to take AI's.

    My stress is caused by them locking down my thread for what I felt was a reason that wasn't my fault. it's pretty known here the bias against alternative medicine and we all know that there are things you can say about alternative medicine and get away with that if you were to say those things about chemotherapy you would be in trouble, and that's what happened to me. I say it's not fair. The mods feel it is. The person was just expressing their view. But when I do the same I get locked down. I'm fragile and can't take the drama...and when I feel I've suffered an injustice it makes it worse as I honestly didn't think I did anything wrong. It sent me into a 12 hr asthma attack which is how I ended at the ER.

    I'm so weak because the thought of food makes me sick. I'm taking around 600 calories a day and I want a feeding tube bc I feel so weak and out of it. I can't try any new drugs bc I'm losing my ability to swallow w/o throwing it all back up. No pain mgt for mets. Everything makes me vomit.

    I was diagnosed with stage 4 cancer almost a year ago, and in that time between my insurance company fighting over what dr to let me see; getting and oncologist I didn't like and having to switch to a new one; the waiting time on that; and now having an oncologist who is nervous to treat me because of the severe SE's I get who refuses to offer me standard treatment with reduced dosing when I KNOW that's been done for Sensitive Sue's like me.

    That's why you see no treatments listed. I've had none. I'm more into Altmed. I don't want to die, but don't want to survive at all costs either. Need my QoL :)

    The only tx I've had is Ax with horrendous results. I have had all imaging scans and have my 6 mos PET coming soon.

  • Cee67
    Cee67 Member Posts: 43

    Oh, I too am under the care of a naturopath and she started me on 6 supplements with more to add later. 4 of the 6 make me instantly sick and the other two are hit or miss.

    It's the swallowing as much as the pills. She gave me some liquids and they're vomitable...and make me vomit.

    If they'll consent to the feeding tube my mom says I can grind my supps and still take them :)

    If I'm sensitive to the supp itself it won't make a difference, but if it's swallowing that's the issue it could help a lot!

    The Renaissance Faire starts in 3 weeks and I'm too weak to go unless I get some sustenance lol!

    Gah not trying to hijack :o

    X your fingers I get the tube. Will reply when I am able when they're not doing stuff to me :)

  • LW0919
    LW0919 Member Posts: 37

    Jennie93 - I finally decided to start Anastrozole a little over a week ago and since the, I've had 2 migraines In 9 days. Each lasting over a span of 2 days. I've had migraines in the past but usually no more often than once a month or every other month. I can't help but think it's the meds.

    Also, I've had muscle cramps in my legs 3 times since I started the med. Again, I've had these in the past but every once in a blue moon. To have 3 in nine days is not normal. If you've not had muscle cramps before, the pain from the cramp takes a while to work off. The soreness would even carry over into the next day.

    Lastly, the hot flashes. I've had hot flashes over the last year but not as often and to the degree that these have been. More often and more heat.

    I believe I'm going to have to try something else, I don't think I can make it long enough to see if it gets better.

    ~Lori

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Cee, you'ave had a crappy year. I wish you luck. Here's hoping that you'll be able to try the Teva anastrozole. AND that you tolerate it. HUGS!

  • dltnhm
    dltnhm Member Posts: 420

    re:Effexor

    Not everyone has close to the same side effects with different anti/depressants. And certainly this goes for ending one or transitioning to another. As someone who took Effexor many, many years ago for quite some time and then stopped this medication, I NEVER experienced anything resembling brain zaps, zings, messing with my brain, no nausea or yucky feeling. So although I believe this was fluffqueen's experience / it is by no means a given with Effexor use or discontinuation.

    Effexor also comes in different forms. Effexor XR is an extended release capsule that dispenses the medication thus. Effexor is also available in smaller dose caplets/tablets that are not extended release.

    And although Effexor is used in conjunction with AIs - it's important to keep in mind that a psychiatrist is the medical professional in the best place to monitor the start and cessation of antidepressants - especially if someone has never taken one before. Having your MO and a psychiatrist monitoring this is ideal.

    Full disclosure: my internist, who is my PCP - now prescribes my mood stabilizing prescriptions - but this happened only after I was on those medications for many years. And of course, my MO and my gynecologist monitor all my meds too.

  • Cee67
    Cee67 Member Posts: 43

    Thanks Peggy :)

    Lori, your se's kicked in pretty quick like mine. Hope both of us can find something that works.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    You're welcome, Cee! HUGS.

    Lori, hope you can get it figured out too. That proverbial needle in a haystack :( HUGS.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    Lori, have you started a statin for cholesterol? They are known to cause leg cramps. Just a thought.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Oh so true, SpookiesMom. My DH wound up in the hospital his legs were so bad. Luckily we landed a doc who loved mysteries and he figured it out. DH could barely walk and his legs hurt so. Statins caused me like pins and needles or electric current running up and down my legs that still is around after many years off them. I know many people have no trouble with statins - DH and I were unlucky enough to not be one of them.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    I get them, not frequently. Geez, they sure can hurt!

  • Cee67
    Cee67 Member Posts: 43

    Statins haven't bothered me too much thank goodness but I get occasional shooting pains in my arms. Come to discover my mother has the SAME issue, only far worse.

    Statins are worrisome meds and can mess people up bad! I hate taking them but glad no major issues. ..unlike everything else bah!

    Oh! I can take alprazalam (Xanax) with no se's at all...so rare and so wonderful. Wish I was like the ones here who can take things without anxiety of what will happen. Jealous of them lol!

  • lago
    lago Member Posts: 11,653

    Cee67 when you stop anti depressants your doctor will ween you off them gradually. All I know is I could't go on with the anxiety that Exemestane gave me. BTW when I went off Anastarozole after 3 years on it I was better in a few days. Be sure it's the Anastrozole that's causing your issues. It might be a combo of things.

    Keep it going Caryn!

  • ruthbru
    ruthbru Member Posts: 47,709

    You could try tonic water for leg cramps.

  • spookiesmom
    spookiesmom Member Posts: 8,178

    I have! Mine aren't frequent enough for daily use, besides, tastes better with gin!!!!

  • ruthbru
    ruthbru Member Posts: 47,709

    So true, Spookie!Happy

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    ooh, i love tonic water with lime! And a little vodka, lol. and those gin soaked raising everyone talked about? I made those last summer. I cant say they helped tremendously, but I also had them stashed in the fridge not covered on the counter. so, mine never dried out...but oh my, they were pretty tasty. I would fish out nine raisins floating in the gin. YUM!

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    just got an email on new trials. One of them was through University of Michigan, phase II, using Cymbalta for chronic pain. If you are in Michigan, might want to check it out. Here's a link.


    https://clinicaltrials.gov/show/NCT01912612