Arimidex - Coping with the SE's

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  • beau
    beau Member Posts: 374
    edited October 2011

    HI VJSL8,

     I am sorry to hear that you are having such a rough timr on Arimidex! I am now 9 months into the journey and things are slowly getting better, but it takes a lot of work, tinkering with meds, diet, exercise, etc. I too am havie significant joint aches, plus I have three herniated disks in my neck that went nuclear when I went on Arimidex due to more arthritis through out my body. However, I continue to tinker with medications and diet to try to smooth things out and it is definitely helping. 

    Have you tried a muscle relaxer such as diazapam (this can be used in different ways, but I started a 10mg dose and it really helped.) There are many muscle relaxers out there and often the pain we feel is related not only to the inflammation in the joints but the muscle spasms/pain around the joint. 

    You could also consider taking a small dose of pure oxycodone (5mg), which is the pure opiate without any NSAID in it for pain relief. I used that at first before my doctor tried a msucle relaxer and it reallly helped.  

    Defintely look into your vit D as that can also be part of the picture. I continue to experiment with my diet as well. I am cutting way back on dairy (and alas coffee) and I found that it has really lessened my pain.  

    In any event, if you really are at peace with your choice to stop Ariimidex, I wish you all the best., I do think, however, that given that this is your second recurrence, you should be sure that you look deep into your heart to be sure that you have really comed to terms with the  possibilty that a 3rd recurrence, god forbid, is not out of the question. Please think about at least trying the other AIs to see if they are easier on you or trying some things like about to help come with the pain. Constant pain is not something that you should have to live with, no matter what!

    I am probably in a different position from you - I have 2 kids who are 10 and 13, so I feel that if I ever quit and it came back (and believe you me, there are days, when I want to go AWOL), it would really haunt me.  I want to do everything that I can to be here to see them grow up. Of course, that doesn't mean that I won't have a recurrence (ro get hit ny a bus for that matter), but when I looked into my heart, I felf that is what I needed to do.

    I wish you a safe journey and peace with your decision. Good luck!! Beau 

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited October 2011

    Anyone else have nausea or vomiting when first starting?  

     I was on it for a year but went off it for 3 weeks when I saw my DEXA report.   I since spoke to my onc and have decided to stay on it with a bone-builder, but when I want back on it, I started getting sick.   First just nausea, then one day terrible vomiting.   I went off it until I felt better and am fine right now.   Should I start up again?   It may have even been a bug, I don't know???

    In the year I was on it, I did not seem to have the awful side effects that so many have.   In fact, with the exception of hot flashes and some low libido, I felt fine.

  • stage1
    stage1 Member Posts: 475
    edited October 2011

    Fearless, Yes, I was nauseated and threw up once on the first week of Arimidex.  That was two months ago, I am fine, now, except some muscle pain is starting up around the shoulders and upper back.  If I were you, I would start again with the bone builder.  What bone builder did he prescribe? 

  • out03doors
    out03doors Member Posts: 36
    edited October 2011

    I started  Anastrozole about 6 months ago. Occasionally after exercising, my calf muscle starts cramping, with some limping , 1-2 days after exercising. Does anyone else experience this? If so, what reduces/eliminates the soreness?

  • sweetcorn
    sweetcorn Member Posts: 188
    edited October 2011

    I told my Med Onc. I wouldn't take Tamoxifen or Arimidex.  He wanted me to do three years on tamox and then two years on the other.  I asked him if I could remain on Evista, and he said fine.  Evista is reloxifine which is a cousin of Tamoxifen.  I took it for a couple of years prior to my BC diagnosis for bone health.   I do not experience side effects with Evista.  And since I did chemo and rads, surely that got those cancer cells out of my system!

    Jane

  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited October 2011

    VJSL8 -

    I feel like Oscar the Grouch in my "I Hate Arimidex" garbage can, but I have side effects similar to yours and have to take a bunch of other medications to counter them.  Anti-depressants, anti-anxiety, two different kinds of pain meds, and now Requip for restless legs.  If I didn't have stage IV disease, I would have quit Arimidex after two weeks.  As it stands, it's kept me in remission for the last 18 months so I'll keep on keeping on, and complain to anyone who'll listen.  ;-)

    E

  • otter
    otter Member Posts: 6,099
    edited October 2011

    VJSL8 mentioned having been prescribed "Megace" when she had BC in 1987.  I was curious about that drug, so I looked it up.  Here's the current official prescribing information:  http://www.drugs.com/pro/megace.html

    Megace (a.k.a. megestrol acetate) is a "progestin" -- it's a synthetic (man-made) version of progesterone.  You might have heard the term "progestin" before.  The hormone replacement drugs that have been used for decades to treat symptoms of menopause often contain a progestin, along with estrogen. Prempro is an example of such a combination of estrogen + progestin.

    According to the prescribing information, here's the official, FDA-approved "indication" (use) for Megace:  "Megace is indicated for the palliative treatment of advanced carcinoma of the breast or endometrium (i.e., recurrent, inoperable, or metastatic disease). It should not be used in lieu of currently accepted procedures such as surgery, radiation, or chemotherapy."

    Apparently, some physicians also use Megace as an appetite stimulant in nursing home patients and in people with AIDS.  The articles I read said it isn't known why megestrol acetate works so well as an appetite stimulant, but it's even marketed for that purpose (to treat cachexia and malnourishment).  The prescribing information says weight gain "is a frequent side effect of Megace."  The weight gain is caused by the increase in appetite, not by fluid retention as might be expected from the steroid structure of the drug.

    Just FYI.

    otter

  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited October 2011

    Stage 1, I agree.   I want to give it another try.   She prescribed Fosamax (not sure why).   I know it has a bad rap, but I do know some women who have had no issues from it, so I'll try it - along with calcium and D.

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited October 2011

    three days and counting...diarhea for the past three days and this is the only different thing so i assume they are connected. ...we shall see...am taking calcium with it...and vitamin d too.\

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    enjoyful - we'll listen so rant on anytime.

    sweetcorn, I hear ya but a tidbit to think on is that you were on the Evista pre-BC dx and it did not stop it and also if chemo and rads was all it took to get rid of rogue BC cells none of us would need Tamox or the other AI's (or alternatives methods).  Just a thought as you have said your MO said okay. 

  • StillKicking
    StillKicking Member Posts: 115
    edited October 2011

    February 2012 will be 4 years of aches and pains of Arimidex.  I had decided that enough was enough and January 31st would be my last day.  However, I recently read on bc.org an article that stated that Arimidex decreased your chances of dying of LUNG cancer by an astounding 87%!!!

    Since I am a heavy smoker I decided I might better stay on it for the full 5 years.  My biggest problem is the fatigue.  I find it hard to stay focused and complete anything.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    StillKicking, are you exercising to try and alleviate the  aches and pains?  Exercise also works for the fatigue - sounds crazy but it really does help.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited October 2011

    lago, I will look for your spice. I've tried several different seasonings, but keep coming back to the taco because I love hot, spicy things with a kick!

    As patoo said; the best way to fight aches, pains and fatigue is to move, move, move.

  • lago
    lago Member Posts: 17,186
    edited October 2011

    Ruth I love spicey too. You can always heat it up.

  • TinaT
    TinaT Member Posts: 2,300
    edited October 2011

    Sandeeonherown - I had pretty severe GI problems (and headaches) at the beginning, but they eased up after about a month or so.  Be sure not to get dehydrated and perhaps check about drinking some Gatorade or some other electrolyte replacement if your doc thinks it's indicated.

    Hang in there!!! 

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited October 2011

    Thanks TinaT...am committed to drinking lots of fluids! Heck of a way to inspire me but I will keep on with it) Thanks for the encouragement!

  • Desny
    Desny Member Posts: 371
    edited October 2011

    I have been Arimidex for almost 4 years.  I have weight gain even though I exercise every other day.  The exercise helps me with my joint pain.  Sorry to say that nothing has helped with the weight issue.  My Ono says that I will be able to lose the weight when I come off Arimidex.  I sure hope she is correct!

    I struggle everyday with the decision to stay on this drug.  I know it is effecting me - emotionally and physically but I want to cross the 5 year finish line.  Wishing us all strength along our journey.

  • Desny
    Desny Member Posts: 371
    edited October 2011

    I have been Arimidex for almost 4 years.  I have weight gain even though I exercise every other day.  The exercise helps me with my joint pain.  Sorry to say that nothing has helped with the weight issue.  My Ono says that I will be able to lose the weight when I come off Arimidex.  I sure hope she is correct!

    I struggle everyday with the decision to stay on this drug.  I know it is effecting me - emotionally and physically but I want to cross the 5 year finish line.  Wishing us all strength along our journey.

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited October 2011

    Megace is one of the active  chemicals in marijuana.  Megace is the chemical that triggers "the munchies" which is how it helps people gain weight.  How it kills breast cancer cells (in test tubes, anyway) is not yet known. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Desny

    I'm into my 5th year - and the exhaustion is definitely cumulative.  I am much, MUCH more tired than I was last year.  Everything else the same, same diet, exercise, nothing has changed but time.  Knowing I am supposed to be on an AI for a lot longer than 5 years, is making me more than sad.  The alternative, is not thinkable!!!!  Wondering if anyone has changed to AROMASIN - and as it functions differently, does it cause less fatigue?

  • don23
    don23 Member Posts: 512
    edited October 2011

    Desny - I did switch from Arimidex to Aromasin about a month ago. I was having a lot of joint pain on Arimidex so MO let me switch to Aromasin. Well - that didn't work out too well. I had more SE's with the Aromasin than with the Arimidex. I lasted on it for a month and decided I couldnt take it anymore so I went back on Arimidex. So for me it wasn't a good move. Maybe I should have given it more time but decided not to. Everybody is different so it might work better for you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Aromasin - oh, my.  Just looked up the SE's - the weakness/tiredness is MUCH more likely on it than on Arimidex or Femara. PLUS - it lists hair loss - no thanks, been there done that - darn.  Staying with the little white pill - oh, well.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    There's gonna ba a BC breakthrough, I can feel it.  Just don't know how much longer but we are all going to be looking back at what we endured and it will all be over. 

  • Carol65
    Carol65 Member Posts: 8
    edited October 2011

    Hi all,

    I've been lurkng all through my cancer treatment, and have received tremendous help from so many members.  I had chemo (not too bad), mastectomy, radiation, and now I've been on anastrazole for two weeks.  What just showed up is terrible insomnia, which just laughs at lunesta and ambien.  I'm thinking of trying lorazapam.  I read on the net that usualy 2-4 mgs are prescribed for sleep.  I'd appreciate any advice on this insomnia.  And, is it better to take the anastrazole at bedtime or first thing in the morning (how early?).  Thanks for any replies. 

  • Dilly
    Dilly Member Posts: 655
    edited October 2011

    Carol, I don't post much to this thread because "coping with the se's" thanks to this & other threads has been relatively "easy" so far -- diet, exercise, supplements (calcium & Magnesium & D)... after the first few weeks it just wasn't too bad...I've been on this A-team for 14 months now.  Biggest issue has been unmentionable dryness, which is another topic.

    Anyway:  I think when you take Anastrazole is a personal preference. Some take it at night; some at mid-day.  After some experimentation, I take mine in the morning & figure I'll have the day to move around, deal with se's and be tired at night. For awhile I had the insomnia - whether it was "just" bc, or the med I can't say.  It took awhile and I took trazadone to help sleep for a couple months, however just 1 mg. Lorazepam(Ativan) works about the same, at least for me - nightnight. These days I sleep ok without meds.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited October 2011

    I have always been a horrible sleeper.... now 'more horribler' than ever. Along with the Ambien (which I take quite often), I have a collection of relaxation and hypnosis CDs. I play when I go to bed, and when I wake up during the night. They actually help me a lot. I found a new one at Walmart the other day (in a spot by the candles, not with the regular music CDs) called 'Sleep' which has music and ocean waves and is very nice.

  • beau
    beau Member Posts: 374
    edited October 2011

    HI Carol.

    I had a hard start with Arimidex, including insomnia. I took it in the morning, but it made me foggy, sepcially on an empty stomach. When I switched to evening, it didn't seem to make the insomnia any worse and I felt better during the day.

    I am now 9 months in and things are evening out. I recently switched to after lunch as a way to maybe rachet back on the insomnia part (which has decreased to some degree on its own as time has gone on - not completely, but I don't always need a sleeping pill, especailly if I exercise and limit my caffeine to just the morning cup of coffee.)

    I would experiment and see what suits you best. Exercise, less caffeine, meditation and meds might be the mix that you need. Good luck! Beau 

  • pickle
    pickle Member Posts: 1,409
    edited October 2011

     I am prescribed 1 mg Lorazapam (Ativan) but I ony take .5 mg at night. I have been on it since dx and I have never had to increase the dosage yet.

    I was on tamox for 2 years then started Aromasin almost 3 months ago. The aches, joint pain and unbelievable fatigue is really getting to me. Any tips would be greatly appreciated.

    Thanks

    Beth 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited October 2011

    Keep moving is my biggest tip!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I sometimes get the A Team Not Sleeping Shift ( figure we each must get it some time or other) - when it's allergy season, I double up on Antihistamine - and when it's not, my standby "relaxer" is Valerian Root.

    Liquid, get it at Whole Foods, homeopathic, a few drops under the tongue ( taste, well, I like anise, so my opinion doesn't count!) or a few drops in a little bit of water.  No "hangover" - no "weird dreams" - Valerian Root.  Works well for me.

    Last night happened to be one of those, check the clok every hour night - know everyone knows how that feels - even WITH antihistamine....oh, well, we know it's SO SO SO SO SO much better than the alternative - so I give thanks for Arimidex....honestly I doSmile

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