Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

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

Options
nancyjac
nancyjac Member Posts: 59

I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.

I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.

Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.

Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More

«134567606

Comments

  • dngdonnelly
    dngdonnelly Member Posts: 2
    Options

    I've been on Anastrozole since February of this year (only 4 more years to go!!). I have the hot flashes and night sweats but nothing unbearable. What has suddenly gotten worse is the joint pain in my feet and thumbs. It's only bad when I first get up in the morning, but after I get up and moving, it gets better. Luckily it hasn't stopped me from working out. I didn't have any of the weight gain that other people have talked about; actually, I have lost 10 pounds since I started the medicine. I would also like to hear what people do to help deal with the joint pain and hot flashes. I did hear from someone who takes Potassium to help with the side effects, and even though she swears by it, my oncologist says he has never heard of that. My thoughts are with you, and I hope the side effects are OK for you!!

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Hi Gina.  Thanks for sharing your experience.  My onc did tell me that the joint issues tend to be worst first thing in the morning when our bodies have basically been inactive all night sleeping.  I tend to get up several times a night to pee, so thinking of somehow incorporating just a minute or so of some sort of stretching to see if that helps when I first get up in the morning.  Of course I am still half asleep and on total auto-pilot when I get up to pee, so may be hard to incorporate anything new in that state.

    Glad to hear that you haven't had the weight gain SE.  My weight was at a good place for me before  DX and stayed pretty stable during chemo (I lost and regained the same 5 pounds every 3 week cycle).  But then just after chemo but before surgery I stopped smoking and have packed on some pounds due to that and because I hadn't been exercising much due to fatigue and then the bum knee.  At this point I need to lose at least 20 lbs.....maybe even 30..and certainly not gain any more.

     Do you mind me asking how old you are?  In your photo you look way too young to be on a post menopausal AI.

  • specialk
    specialk Member Posts: 9,237
    Options

    I just started Arimidex a couple of weeks ago.  I had been on Femara since the end of last summer but I was experiencing more aching than I did on chemo.  I also developed a trigger thumb suddenly after about the first six months.  I did a washout period of 2-3 weeks, then switched over.  I am finding less joint pain on Arimidex - I had been having trouble getting out of the car and taking the first few steps, and also standing up after sitting for any period of time.  At the same time I stopped eating gluten and I am wondering if this has been helping also.  I had read on the other threads that some have noticed less joint pain when they did this.  I am walking 4 miles a day with problems - once I am moving my joints don't bother me.  When I first get out of bed, probably the first 20 steps or so I am very stiff.  What time of day do you take your AI?

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Wow SpecialK.....another one that looks way too young to be taking AI.  Glad to hear you are doing well on Arimidex so far, especially with the less joint pain.  I'd love to get back to walking 3-4 miles a day.  Hopefully I can work back up to that.  I got a cortisone shot for my knee yesterday and today it is feeling much better.

  • Lee64
    Lee64 Member Posts: 113
    Options

    Thanks for starting a new thread on this topic. I have been on Anastrozole since Sept. of 2011 and have not experienced any physical side effects. However, my blood sugar on subsequent blood tests has been elevated for no apparent reason. I am not overweight and I have a good diet. I have my next check-up on Monday so will find out then if it continues to rise.

  • specialk
    specialk Member Posts: 9,237
    Options

    nancyjac - thanks!  I am actually in my mid-50's.  I had a complete hyst/ooph 11 years ago so I have been menopausal for a long time!  I am also osteopenic - had been stable for about ten years, but worsened at every checkpoint on my last bone density.  I am now receiving Prolia injections every six months - next one is due in August.  I have not had any SE from those, and hopefully it is working to prevent any further loss, and rebuild the loss I have.  My MO said this could take up to two years.  Hope your knee improves enough to let you start putting in the mileage.  The trigger thumb I have can be treated with a cortisone injection as well, but I am giving it some time to see if it resolves on its own.

  • Blessings2011
    Blessings2011 Member Posts: 1,801
    Options

    nancyjac - thank you for starting this new thread. I just sit here and watch as the posts on the other one climb to almost 5,000 - and I have to tell you it's intimidating.

    I got my Rx for Anastrozole on January 3rd of this year. I haven't opened it yet.

    My MO said I could wait til I was off the post-surgery/TE fills pain meds.

    I gave her a gazillion reasons why 1) I didn't NEED this drug, and 2) was AFRAID of this drug.

    After my BMX, my risk factor for recurrence was 1% - 2%.

    I had mostly DCIS, with a microinvasion of IDC: one area that was 1.5mm (half a grain of rice) and .5 mm (a grain of salt). Neither one showed up in my final pathology report. They said the core-needle biopsy must have gotten it all.

    I was also 14 years post-menopausal, and I'd had a hysterectomy, so there was no way I had any excess estrogen floating around. She kindly pointed out that estrogen was continuing to be produced not only in the adrenal glands, but also in body fat, of which I had plenty.

    At that point I made the decision to enter a medically-supervised weight loss program (Optifast) and am almost at my goal. So far I've lost almost 50 pounds. The MO says this has further reduced my risk factor by 23%. So now it's at .77%? Less than one percent?

    I explained that I had so many other medical issues going on in my life, especially osteopenia, degenerative disk disease, spinal stenosis, and fibromyalgia. It was already difficult for me to get out of bed in the morning.....and despite going through a ten week chronic pain management program, there were still days when I needed Vicodin during a particularly nasty fibro flare.

    She mentioned that not all women get side effects. (Hard to imagine, while watching those posts on the other thread add up every day...) I also kept hearing my mom's voice (a 26 year BC survivor when she passed at the age of 87) in my head, saying "Honey, you won't know until you try." I also read many, many comments from Stage IV women who wished that the AIs were an option for them.

    So I told the MO that I would be willing to try the Anastrozole, but that I would be keeping careful records of any side effects. She understood. I said I MIGHT try another drug should the SEs be debilitating. She understood. I said that my QOL was more important to me, and that there may come a time when I said I wanted to stop completely. She agreed.

    The only remaining issue is the fact that she also wants to put me on one of the bone-building drugs. THAT is one thing that I will probably refuse, especially with the current research showing so many problems....

    Here is something that has really surprised me: SpecialK mentioned this in her post.....since beginning this diet on March 22nd, my fibromyalgia and joint pain has diminished considerably!

    I don't think it's from weight loss or exercise alone, even though I am now able to go to the gym, water aerobics, ride my bike, and walk a few miles a day.

    I believe it was getting off the white sugar, white flour, and GLUTEN. (Optifast is gluten-free.) I always wanted to go on an elimination diet to see if it would have an effect, but it was too hard - waaaaaaaa - and now I've been gluten-free for four months. I won't be adding that back into my diet.

    I got a reprieve on the Anastrozole while I was on Optifast. This week we slowly start adding real food back into the diet for the next 14 weeks. I see the MO in September. I have a feeling I know what we'll be talking about....Undecided

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Fascinating story Blessings, and sounds like it has been very positive for the most part.  Please keep us posted on how it is going.

  • Snoopsmom
    Snoopsmom Member Posts: 42
    Options

    I'm in my third month of Anastrazole and have had absolutely NO side effects! I keep waiting for something to show up, but so far....nada. No fatigue, no weight gain, no joint pain, no nuttin'! My MO said MOST women have no or very minor SEs. I am MANY years post-menopausal (age 65) and my bone scan was fine so I'm not concerned about bone loss at this point. I'd rather start out taking something knowing that I can quit it if necessary.

  • nancyjac
    nancyjac Member Posts: 59
    Options

    That is great to hear Snoopsmom.  Please continue to keep up posted.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,048
    Options

    Another happy Anastrozole customer! 7 months in and no complaints. I also get monthly Aredia infusions. I do take glucosamine, am not overweight and am physically active not only at work but I excercise almost daily. I am also NED! Some people do have bad se's but you will never know until you try it. You can always stop. Caryn

  • Mini1
    Mini1 Member Posts: 1,309
    Options

    I was on Anastrozole for one month and went to my Dr. and told him I could not take it for 5 more days let alone 5  years. It affected my sleep to the point I was sometimes awake for 24 hours at a time. I hurt all over, and I cried at a Hallmark commercial. I had no appetite, was constipated and was bone tired even if I did sleep. He changed my medication and within a matter of days I began to feel better. I have a few minor things still going on, but I'm unsure if the radiation is affecting those, so I won't know for sure for another few weeks if that is true. I feel soooo much better. For me, I would simply go without if Anastrazole were my only adjunct treatment option. Thankfully we do have other options out there.

     My Dr. says I may have to change to Tamox because of osteoporosis and my inability to take anything for it. I'm scared I will have more side effects again if I change now, but don't want to hurt my bones even more by taking it. It is so confusing! I have read that some recommend Tamox for 2-3 years and an AI for the balance of the 5 years. I may go that route. I'm trying to firght the osteo with diet and exercise, but I won't know how effective that is working until next years bone density test.

    Anyway, I hope that's not TMI. :-) I know we are all different and react differently to treatments. This was mine with Anastrozole.I hope your experience is better. Good Luck!

  • SusannahW
    SusannahW Member Posts: 375
    Options

    Nancyjac, this thread is very helpful, thanks for startingit. I'm still frightened, but will let you know how it goes once I start arimidex.



    Susannah

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Welcome Susannah.  We can learn together.  I just started on anastrazole this past week, so no effects yet.  Some have said they had no SE for the first 2-3 months.

  • ruthbru
    ruthbru Member Posts: 47,238
    Options

    Will be finishing off my 5 years of Arimidex in August. I was a little 'creaky' and 'flushy' in the beginning, but I just kept busy and moving. Once my body adjusted, I was fine and I have had not had any problems; weight stayed the same, bones are still good as is everything else.

    A couple hints to help those just starting out:

    * I think some of the SEs attributed to arimidex are actually 'just' post treatment SEs. I especially think this is true of feeling down/mood issues. You have been on a fight or flight mode since your diagnosis, and suddenly you are DONE! That takes a good deal of physiological adjustment, at least it did for me.

    * if you have been exercising, keep at it. If you haven't been, start. It's great for the mood, the figure, how you feel about yourself, helps fight any weight gain, keeps your joints limber, keeps the bones strong, etc. etc. etc.

    * a daily serving of prunes is a good bone builder

    * be grateful that there is something we can take that really does reduce our chances of recurrence. I can't think of any SEs that would be worse than that. For me, chemo reduced the chance that cancer would come back by 20%, Arimidex by 40%....that is HUGE!

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Thanks so much for that great info Ruth.  I hope my course of goes as well as yours has.  40% certainly is huge!

  • ruthbru
    ruthbru Member Posts: 47,238
    Options

    Nancy, I have a friend who just finished her 5 years also. She went into it with osteopenia too but didn't experience any more bone loss (she does a lot of weight bearing exercise). It is something you will want to keep good track of though, possibly get a yearly DEXA instead of the usual every two years.

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Yep, that's the plan Ruth.  I had a DEXA scan at the same time as the mammeogram that ended up being diagnosed as this cancer, so will will have one come Oct/Nov, right around a year after I was diagnosed.  I'm tryiing like heck to get back to weight bearing exercise, but with a bum knee and some residual peripheral neuopathy, it's been hard to do it consistantly enough.  

    I also quit smoking after chemo.  Between my taste buds recovering from chemo and now being a non smoker I have managed to pack on an extra 15 pounds that I don't need.  So the exercise component is doubly inportant for me.

  • Blessings2011
    Blessings2011 Member Posts: 1,801
    Options

    I got a card from my MO. She wants to see me in September. I've been flying under the radar on Optifast, but I guess she's been keeping track of me on the computer!!!! Surprised

    Rats. She gave me a reprieve from Anastrozole until I got to the Transition phase of the diet, which I started on Thursday. I thought maybe if I didn't tell her, she wouldn't find out?

    Ha! Embarassed

    Seeing the PS next Thursday to discuss exchange. Maybe in August?

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Has anybody experienced any nausea from AI?  I've only been taking Anastrozole for not quite a week but the last couple of days I had some very slight on again off again nausea.  Only lasts for a few minutes and no where near the throw up level of intensity.  Might just be something I ate?

  • doxie
    doxie Member Posts: 700
    Options

    Nancyjac - I had moderate nausea off and on for the first two weeks of taking arimidex.  Hasn't returned at all in the 3 months since.

  • nancyjac
    nancyjac Member Posts: 59
    Options

    Thanks for that info doxie.  Very good to know.

  • ruthbru
    ruthbru Member Posts: 47,238
    Options

    You could try taking it with food (or not with food) or at a different time of the day to see if that makes any difference.

  • nwest125
    nwest125 Member Posts: 69
    Options

    I have been on Arimidex for about 18 months now and I started having joint pains in my fingers and toes around the 6 months mark and thought about quitting or changing but stuck it out . I had trigger finger in my left thumb and middle and ring fingers and they would swell up so much in the mornings that I had to take my rings off. I missed them so finally got them re sized. I remember my toes aching but the more I moved in the mornings the better I felt. Also I found that running hot water over my hands first thing in the mornings helped alot. Now 18 months later I still have the aches and tiredness but nothing that I can't live with.My trigger fingers are gone and I am feeling much more like my old self.  I started out taking it at night but change to mornings much better for me .Hang in there ladies.

    Nancy

  • edot
    edot Member Posts: 5
    Options

    I started arimidex last november, I think. Within the first month I had stiff fingers, legs, and couldn't make a fist with my right hand. But I noticed in the last month or so, the stiffness is much less. I've been on Zoloft for a while, no hot flashes. I have arthritis in my left knee, but have been doing physical therapy and the pain is improving. I seem to be less tired, too... Still fuzzy headed at times.



    If you start arimidex after chemo and rads, I do think it's hard to disentangle the SE's at the end of treatment from the arimidex SE's.



    I gained at least 20 lbs on chemo, but as of this week, I've lost almost 30 since last August.... Exercise and low carbohydrate eating, and practicing mindfulness. I don't know...it's not like the angsty dieting that never worked in the past.

  • lee7
    lee7 Member Posts: 204
    Options

    edot,  that great about being able to lose the weight!

    Question for all...Has anyone tried taking Arimidex in the afternoon with lunch ???

    I take my arimidex in the evening at the moment....I tried it in the morning for awhile too. I was hoping one time would be better than the other but it seems each comes with its own problems.  When I took it in the morning, I seemed to be more achey and get more hot flashes in the day. (hated that) When I take it at night now, I am probably sleeping thru most of the hot flashes but I'm having a terrible time falling asleep.

  • Mini1
    Mini1 Member Posts: 1,309
    Options

    Lee7 - I am on a different AI, but I take mine at lunch. Taking it in the evening, especially when I tried Anastrazole, gave me insomnia. I went from having it take me an extra 15-20 minutes to get to sleep, to a few hours, to not sleeeping at all. I was like a zombie after 2 weeks. Mornings didn't seem to work well either. Now I set my phone alarm to remind me to take it at 12:30. So far that seems to be working. :-)

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    Options

    Ok - here's my story.

    I started Arimidix in March last year, and for the first couple of months had bad pain in my knees.  I was taking glucosamine, fish oil and vit e as well as calcuim and magnesium.  I started out not too bad, but progressively got worse.  Insomnia, very bad and I was used to my head hitting the pillow and out like a light for 8 hours, but some nights would be lucky to get 2 hours sleep.  Joint pain spread to my hips and elbows.  Depression and something very like chemo brain started.  I developed trigger thumb, and the palm of my hand on that side would burn for hours.

    In March this year I developed very bad lower back pain and my chiro couldn't fix it.  He finally recommended I see my doctor and ask for a bone scan.  We were all worried about mets.  The bone scan showed degenerative arthritis in both feet, ankles, knees, elbows, wrists, hands, right shoulder and lower back.  I'd had a bone scan in September 2010 just after dx and everything was clear.

    My onc told me that Arimidex doesn't cause joint problems in the larger joints and it couldn't be the Arimidex, but agreed that I could go off it and go onto Aromasin.  I've been off Arimidex for almost 2 months now (and start Aromasin in a week or so) and the difference is amazing.  I'm full of life - my brain is working again, I'm sleeping properly, my back still hurts, but nowhere near as bad and I've lost 10kg!  I feel like a new woman lol.  I can't believe how good I feel - haven't felt like this since before dx.

    I'm hoping that the Aromasin doesn't have such bad se's for me.  My QOL on Arimidex was terrible, but I'm highly ER+ and if I don't take something my chances of recurrance go up by around 9%, so it wouldn't be an easy decision to make if I decided to go off an AI.

    I can finally wear my wedding ring again too - lol my fingers were like little sausages.

    I know not everyone has these se's and I'm hoping that Arimdex treats you kindly.  But it clearly wasn't for me.
    Trish

  • Mini1
    Mini1 Member Posts: 1,309
    Options

    Trish - your storypretty much mirrors mine only mine started within days of taking it. Apparently I am extremely sensitive to something in Anastrazole. I am currenty on Aromasin and have had virtually no side effects. My only concern is the bone loss aspect. I cannot take anything oral or injectable for osteoporosis. I know that Tamoxafin is better for the bones, but I am concerned about side effects. Also I have read that the better option is 2-3 years on an AI and then the balance of time on Tamox. This would be after 5 years. All the other studies I've found show no difference at the 10-year mark whether you've taken 5 years of an AI or 5 years or Tamox.

  • SusannahW
    SusannahW Member Posts: 375
    Options

    Ruth and Nancy, thanks for the info, very helpful.

    Nancy, have you tried taking an antacid? I've had some problems with nausea during radiation, and Zantac was helpful.

    Susannah