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

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Comments

  • Rosiesride
    Rosiesride Member Posts: 197

    Thanks Pontiac Peg...My mom had osteoporosis and took Fosomax many years ago and she did well on it. Never broke a bone and passed away in 2007 at 85 from alzheimers. I just remembered this evening that she had told me Fosomax was a great drug for her. My osteopenia is from the anastrozole and coming back on this site to get info. before I call the doc. I may meet with my GP and ask her to explain the scan results. MY MO suggested Prolia and gave me the option shot every 6 months or pill. Now I am reading about jaw issues from the Prolia? Thanks for your response and I will surely "see" you back on here again...Rosie

  • scrafgal
    scrafgal Member Posts: 412

    Hi all!

    I've been following this thread for a year or more, while I was taking tamoxifen and waiting to get firmly menopausal. Well, my MO tomd me that we are ready to start Arimidex. I know the general side effects but, here is what I would love to know: What is the best thing that you found useful when first starting Arimidex? I expe that there might be a transition phase for my body before it presumably gets used to the drug. Any transition tips?

  • hikinglady
    hikinglady Member Posts: 625

    Scrafgal I felt a bit sleepy for a week or so. Who knows if you will! The sleepiness went away after about 10 days. My MO explained that many side effects recede in a few weeks or months. As people on this thread have shared, it's also true that new side effects sometimes crop up over time. I think I feel best when I stay really hydrated. Daily exercise keeps my joints quite comfortable, and as time went on, my body definitely accommodated this med and I've adjusted and feel really quite fine. You might have fewer of the side effects since you're moving straight from Tamoxifen to an AI.

  • scrafgal
    scrafgal Member Posts: 412

    Thanks HikingLady... I hope I am not sleepy. It's so hard to work when sleepy!

  • ingerp
    ingerp Member Posts: 1,515

    Scrafgal I agree that many/most of the SEs arise from not having estrogen rather than the drug itself, so you might find the transition fairly smooth. What some of us on another thread did was start out a lower dose, although you probably don't need to since you've already been on Tamoxifen. Taking it with food helps some women, as does taking it earlier in the day. And, of course, keep moving. I bet you don't notice much of a difference.

  • Stellawt57
    Stellawt57 Member Posts: 65

    MissouriCat, I had leg cramps before DX and they became worse after starting anastrozole. When I picked up a script I asked my pharmacist what would help he said to take 200 mg of CoQu10, so I take 100mg in the morning and another at night. My leg cramps totally subsided, what a relief for sleeping. During the week I do have a few beers and have had no issues with leg cramps. But, we all have different reactions to the med. I do strength & weight exercises well as bike riding to keep the joints from talking to me. I started magnesium glycinate 3x a day as well as take Natural Calm 2x a day as recommended by my Integrative Dr. I also see here once a week for acupuncture treatments. I also have eliminated gluten from my diet as I have a sensitivity to it and it also creates inflammation which adds to the joint pain. I know the beer has gluten, but in moderation I tolerate it. Hope this helps.

  • super52
    super52 Member Posts: 61

    Scrafgal,

    I started taking anastrazole three months ago. I was very nervous to begin taking it, but I found that my body quickly adjusted. I did feel dizzy the first few days, but then I was fine. The first day was the worst but still not horrible. If possible, I would recommend beginning it on a day you don't have anything planned or at least won't have to drive just in case you do experience similar symptoms. I started on a Saturday so that I didn't have to worry about any possible nausea or dizziness catching me by surprise at work. To echo what others have said, staying active was my MO's recommendation for preventing any joint pain or stiffness, and so far I have been fortunate not to have any. I found the comment about CoQ10 interesting because I take that anyway (it is mixed in with the fish oil supplement that I take), and maybe that is why I have not had joint issues. I take my pill in the morning along with one of my fish oil pills only because it is easier for me to take it at the same time everyday and to remember to take it. The best advice I got before starting it was from my radiation nurse who said not to dwell on potential side effects or to look for them and to just take it and then go about my day or evening as I usually would, so that is what I do. Each time I swallow that pill, I think to myself I am taking something away from the cancer rather than letting cancer take something away from me.

    Good luck to you!

  • hikinglady
    hikinglady Member Posts: 625

    RE: Exercise and Anastrozole

    Chiming in about how much exercise helps me. When I started my AI last November, I immediately had to have 2 surgeries in a row, and I was also recovering from a severe (chemo-reaction) lung inflammation. I had not done my usual daily exercise routine for 16 months, due to an extensive foot surgery followed by breast cancer surgeries and chemo. In December of 2018, I then had to have another foot surgery (hardware removal), followed by my exchange surgery in early January. So, I had very reduced activity level and no exercise for quite awhile due to healing and recovery in December - February. I was able to start daily exercise in March, and as I built up my strength, my joints completely stopped complaining. My suspicion is that if I'd been stronger and more fit when I started, I might not have had much discomfort at all.

    I now do 1 hour daily of deep-water aerobics (vertical with head above water), with resistance ankle cuffs & foam barbells, at my nearby indoor city pool. This is like working with light weights + aerobic fitness, and I also do mat work (Pilates/yoga exercises), and I hike or bike once or twice a week. After 2 months of daily exercise and gradual strengthening, I felt so much difference. For me, a daily fitness plan has helped me manage my AI symptoms A LOT. This is logical. AI's reduce joint comfort because of less estrogen, and more muscle supports joints. I feel worse (stiffer and a bit achey) if for some reason I can't exercise for a day. If my arthritis (hips and knees and hands) acts up, I take an NSAID, like Ibuprofen, Aleve, or Rx Meloxicam. I've done this less and less often as I've gotten stronger.

    Thumb joints and fingers: My thumb joints are weaker and my pinky fingers seem to lock up on the last joint sometimes. I am sure this is from Anastrozole. I've learned to open jars new ways, and "adapt" my life around this reality. I have to treat all joints a bit gently. Not a deal breaker for me about this med, but certainly an annoyance.


  • l8blmr
    l8blmr Member Posts: 119

    Scrafgal, everyone's body handles the SE's in a different way. So make changes to adjust to your body including changing the AI if necessary. The best advice I received was drink plenty of water and/or tea and exercise everyday. Strength exercises are the best to stave off osteoporosis-the worst SE in my opinion. Weight training, yoga, etc.; try to get in 30-45/day of some exercise. That also helps with sleeping. I also cut back on white carbs; rice, pasta, potatoes, bread, taco chips and sweets-that has helped with no weight gain. But like I said, find what works best for you. Big hugs, we're all in this together.

  • missouricatlady
    missouricatlady Member Posts: 894

    Thank you Hiking Lady (our son lives in Portland) and SUPer52 for your valuable insight. Spookiesmom, always nice to see you, thank you for your thoughts on tonic water, I haven't bought any yet and that is good to know! I wish I couldn't drink alcohol, but if this keeps up, I may quit completely, which would really be beneficial. I was up twice last night walking in circles. I've taken this for 3 months now, started before radiation, and it has just been within the last couple of weeks this started. Stellawt57, I will be going and getting the three things you mentioned on my lunch hour. When I went through chemo, my bed was where I could always feel better. Nighttime is a nightmare now. Thank you and best wishes to everyone, Lisa

  • scrafgal
    scrafgal Member Posts: 412

    Ladies, thank you for the suggestions. I feel much better now! Tamoxifen taught me the value of deep hydration ( I drink 100 ounces of water every day) and I work out regularly doing pilates, elliptical and treadmill walking along with some free weights. I have had hip arthritis for a couple of decades and it's always been manageable as long as I work out. My fear is that bone and joint pain would keep me from working out.. and then with menopause, I could start gaining weight. I also teach and need to walk and use my hands for hours.

    My oncotype was high and my large grade 3 tumor compels me to do everything possible to reduce recurrence...but I didn't sleep well last night once CVS texted me yesterday to let me know that the prescription was ready for pickup!

    Having read your comments makes me feel better about it.

    Thank you!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    I guess I am an outlier when dealing with both my BC and anastrozole. I didn't start exercising or doing weight-bearing exercises. I didn't change my diet. I didn't increase my water intake (it has always been decent). I did gain weight - because I finally was under much less stress and less sleep-deprived than I had been for the previous 5 years when I was the sole caregiver for my husband (he went into a nursing home and passed away a year later). And I didn't stop drinking (I did add folic acid). I don't drink much (usually one glass of wine a day).

    I know I'm lucky that SEs have been very mild. I take my anastrozole in the morning. I take Claritin to help with my morning stiffness (that I had prior to BC).

    Change whatever you want or don't. Whatever helps you on this unwanted journey is generally good. My path may not work for you. That's fine. Your path may be superior. As long as it works for you, that is what matters.

    Today is my FIVE YEAR NED anniversary. I want to give another shoutout to BCO for being there for me when I needed it most. Without the support of the great women here, my journey would have been vastly more difficult. My friends here are definitely "bosom buddies."

    HUGS!

  • missouricatlady
    missouricatlady Member Posts: 894

    Pontiac Peggy - CONGRATULATIONS on your Five Year NED Anniversary, woohoo!!!! I like your quote too, very true!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Thanks, MissouriCatLady!

  • ingerp
    ingerp Member Posts: 1,515

    PontiacPeggy--congrats to you!! Hoping we can all join you in that club someday!!!

  • spookiesmom
    spookiesmom Member Posts: 8,178

    💃💃💃 yay Peg!!!!

  • bennybear
    bennybear Member Posts: 245

    congratulations Peggy!

  • ctmbsikia
    ctmbsikia Member Posts: 772

    Great news Peg!

    I saw a trainer before starting the AI. It helped. I take 2 circuit training classes at work. It helps, but today I hurt and don't know why. Was it the heat? Did I sleep too long? Are my bones getting worse? I did just walk a couple laps around the building. I hate having a desk job. I will be out again at lunch, and will definitely have to take another walk this afternoon. Wondering if I should try the Claritin or add more supplements? I do take 1500mg glucosamine everyday.

  • scrafgal
    scrafgal Member Posts: 412

    Congrats PontiacPeggy! I actually worked out and ate healthily before BC...I just want to be able to continue....I also drank a lot of water before BC but not 100 ounces. I had to bump it up due to tamoxifen!

  • Tappermom383
    Tappermom383 Member Posts: 401

    CoQu10 is an interesting suggestion, Stella. I recall taking it years ago but don’t remember what it was for then. I get terrible leg and foot cramps so it would be worth a try. What’s one more pill (or two) a day!

    MJ

  • magari
    magari Member Posts: 335

    Congrats, Peggy!

    Like you, I've not made big lifestyle changes and side effects remain manageable.

    I do use the joint stiffness as extra motivation to do my PT exercises daily and am maybe a bit more diligent about water intake. I've always been a pretty healthy eater, so have not given up my wine with dinner.

    Would be interested in stats for BC in countries such as France and Italy where wine is part of the food culture.

  • scrafgal
    scrafgal Member Posts: 412

    Is anyone sensitive to lactose and, if so, has the generic form of the drug led to any stomach upset? I buy lactose free milk to avoid taking Lactaid pills. I just emailed my MOs office to see whether taking the Lactaid pill with this drug would be okay...can't see why not but thought that I would ask.

  • cindyny
    cindyny Member Posts: 1,292

    Congrats PontiacPeg! How sweet it is. BIG HUGS TO YOU.

    I saw the PA at my MO office today. All my basic pain issues from my hands to my knees are AI related, which I expected. For my most recent dexa scan showing osteopinia in my hip (neck), she wants me to see an endocrinologist. It was a dramatic loss since my last one prior to dx. I stated I don't want any drugs yet, but want another dexa scan next year - not in 2 years as my insurance allows. She indicated with an endocrinologist, insurance will allow it every year - which I'm very thankful for. (we'll see)

    I showed her my blood work from GP at end of May and my thyroid is off as well. It could be from full breast radiation that scattered. The endocrinologist can keep an eye on it too. New Dr will contact me re: setting up an appointment.

    Lastly she told me she has a very similar dx to me - no family history, size, stage, etc... She had genetic testing and it showed she carries the gene. I said I'd get genetic testing if my insurance covered it. She told me because I've had BC I can get it. So I've filled out a pile of paperwork on family members, ages, alive/dead, cancers, etc... I'm scheduled to go in this Thursday for the appointment.

    Side note: by filling out these papers I noticed my dad & his brothers all had heart attacks; 1 died from massive heart attack. My dad was 62 when he had a heart attack; dad passed at 87, 16 years ago; brothers all predeceased him. WRITING ON THE WALL. I'm SO glad I have a cardiologist and I'm getting a calcium score done in October. It was a WTH moment. I had kind of forgotten how they passed.

    I still take anastrozole 12:30 AM. I'm used to the SE by now, but I still don't like them. I've read that some women take a break, get back to feeling normal, and start it back up. I fear if I ever took a break I'd never start it up again, the start was worse than 6 months out, I don't want to do it again. I think (or is it fantasized? LOL) about feeling semi normal again.

    That's it, thanks for the support always!

  • magari
    magari Member Posts: 335

    Congrats, Peggy!

    Like you, I've not made big lifestyle changes and side effects remain manageable.

    I do use the joint stiffness as extra motivation to do my PT exercises daily and am maybe a bit more diligent about water intake. I've always been a pretty healthy eater, so have not given up my wine with dinner.

    Would be interested in stats for BC in countries such as France and Italy where wine is part of the food culture.

  • l8blmr
    l8blmr Member Posts: 119

    Cangrats PontiacPeg!! Your quote is an inspiration to all of us.....not easy, but DOABLE!!

  • missouricatlady
    missouricatlady Member Posts: 894

    Tappermom38, sorry you suffer from leg cramps too. SpookiesMom, you're right, tonic water is nasty!! I had a small glass last night and a potassium pill and had less trouble, but still a little trouble with leg cramps. I think the neuropathy in my feet plays tricks on my mind too. Today, I am taking my pills (except magnesium and potassium) this morning, with those others this evening, and we will see what that does! Thank you everyone, it is a good feeling to not be alone through this, although I am sorry you are here too. The weather in Missouri is beautiful today, I hope you have a good day! Lisa

  • Stellawt57
    Stellawt57 Member Posts: 65

    PontiacPeg Congrats on completing your 5 yr. trek on this med. hearing from you reminds me that this is very doable! For most, we have just started our trek with this med and can seem overwhelmed with the 5+ yr time frame & SE. Knowing that you and so many others did it keeps me focused on the big picture why I’m taking the drug.

    Thanks to all for your wisdom, positive feedback, honesty, & embraces as I/we move forward through thistrek.

    Just an additional note, the pharmacist shared that our body produces CoQu 10 and as we mature over the yrs the body produces less and less so supplementing is typical.

  • missouricatlady
    missouricatlady Member Posts: 894

    imageI have had someone tell me this is very good for leg cramps. It runs about $18 for the small size and $28 for this size, at a "natural" kind of grocery or herbal store. I'm going to try it. Mix it with water and drink it. Just in case anyone else might find this helpful. Thanks, Lisa

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Thank you all for the kind words. I think my 5 year journey has been quite smooth and uneventful - for which I am thankful. I know a lot of it is the encouragement of you all.

    Good luck!

    HUGS!

  • Rosiesride
    Rosiesride Member Posts: 197

    Pontiac Peg...congrats on NED! You and I are on almost the same time frame with our BC...end of treatment /NED 5 year anny for me will be on August 13...I also am like you in that the anastrozole SE has not been too bad...in the first year, some hot flashes, I also take the Claritin and I believe that helps with bone pain issues.

    I am back on this site and enjoy seeing the old "gang" from 2013 diagnosis group. Some health issues here but they are manageable at this point (neuropathy, osteopenia).

    Hang in there y'all and it's so good to have this support! Have a great day! Rosie