Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Arimidex - Coping with the SE's

18283858788281

Comments

  • ruthbru
    ruthbru Member Posts: 47,698

    11 months. Didn't notice any difference from the start. You could always try it, but switch back if you see more SEs.

  • nativemainer
    nativemainer Member Posts: 7,923

    About a year for me on the generic, too.  No change in SE that I can't also blame on weather and changing seasons.

  • patoo
    patoo Member Posts: 5,243

    Ditto here, about a year or with first refill after generic came out.  No change in SE's. 

  • sacphotomom
    sacphotomom Member Posts: 28

    Hi Ladies..  On the generic vs name brand.. I tried taking a generic and it gave me a rash,  kinda like a heat rash.. and then coupled with the flushing and the hot flashes  could stand it.. I quit it and went back to Name brand.. all gone now ...but I did have dreams, crazy ones on the generic also.. I thought it was just the AR but they stopped after I quit taking the generic..

    My hot flashes are starting to be only a couple a day so they are slowing down big time and don't last as long..  I was really worrying about the summer and the heat but not so bad .. I do have a intolerance to the heat tho .. so l make sure I get my exercise in the morning before the day heats up.  making sure I get my walks in have helped my soreness greatly.. 

    Went in for my 6 month checkup everything is normal! Whoop Whoop! So with that news I'm glad to see its working.. Looking to a water exercise class now to help with stiffness and my LE .. 

    Hope you all have a Great Week!

     7 months in and the SE are getting easier... 

  • tinat
    tinat Member Posts: 2,235

    sacphotomom:  Whoop Whoop!  Glad you're hanging in there!  I have always disliked the heat, but fortunately so far no real hot flashes on the generic Arimidex.  But, I'm just barely 3 months in so.....fingers crossed.

    Best wishes!!!

  • slousha
    slousha Member Posts: 181

    Hi ladies,

    Being on Femara for 15 months, having had a lot of SE's and coping with quite successfully, finally I got rash - first on upper arm and now all the hands over and on the back too. Getting Claritine (Schering) from my PCP didn't help. I'm looking for advice what you other ladies are doing or taking in such case.

    Thanking in advance.

    Greetings

    Usha (English isn't my native language)

  • patoo
    patoo Member Posts: 5,243

    Hi slousha, please check with your PCP or Onc right away.  I think your rash spreading like that should be attended to immediately.

    There is also a thread on "Femara" where you can post as you may get more information from those who are taking it. 

    HUGS

  • sacphotomom
    sacphotomom Member Posts: 28

    Tinat ... My rash from generic came on right away and I had big hives with it, every time I had a hot flash  or just got warm .. for the first month after I switched back I had smaller hives then they all went away.. after 2 months..  so hopefully by now you will not have any severe or abnoramal SE's..  Have a great day/ week / month ladies!

  • gasurvivor2011
    gasurvivor2011 Member Posts: 150

    Just started Arimidex tonight. I am 5 weeks PFC. Just had my exchange surgery Wed. Hopefully  Arimidex will be ok. I am on generic.

    Any advice welcomed for a newbie arimidex person. Smile

    Lisa

  • nativemainer
    nativemainer Member Posts: 7,923

    LisaGH:  one big thing to keep in mind is that a forum like this is a bit skewed--women who have side effects are more likely to post on here than women who have no side effects. That can create a feeling that every woman who takes arimidex has severe side effects.  The majority of women taking an AI have SE that are not troublesome.  That being said, the most common reason for going off an AI like arimidex is joint pain, and the joint pain and stiffness gets better with activity, especially regular walking.  The joint pain/stiffness seems to come on around 3 months in, and for many it peaks and then decreases and levels off at a tolerable level within a few months.  Another thing to remember is that many women with more severe SE on arimidex may not have such severe SE on one of the other AI's (the names of which escape me just now).  So start a walking program now and it will head off and minimize any joint pain you do have.  Hot flashes come with the territory, and if troublesome there are medications that can help,so be sure to mention that to your Med Onc if it happens.  I take gabapentin at bedtime and that controls the nighttime hot flashes so I can sleep better.  There are other drugs (effexor is a commonly used one) that help, too. 

    I guess the take home message is the side effects can be managed IF they are troublesome.  Maybe I'm wierd, but I find some comfort in the SE, that proves to me the arimidex is working.  I'm sure you will do just fine!  

  • gasurvivor2011
    gasurvivor2011 Member Posts: 150

    Thanks Nativemainer- Good advice. I am looking forward to walking again- just as soon as I get these drains out from my exchange surgery I hope to be alot more active. Finished TC 6/1 (still on herceptin). I already have some stiffness hanging on from the chemo- have been able to push through it- hard to get moving mostly in the morning sore- but then it gets easier. Also good to hear that sometimes the side effects if you get them- do get better w/ time.

    I want to do what I can to stay on it. I feel it's important for my treatment.

  • GabbyCal
    GabbyCal Member Posts: 46
    LisaGH - There is also a thread on this forum titled something like: PEOPLE WITHOUT SEs on AIs I NEED YOUR HELP.... Good luck. From my research, It's true that the AIs are an important part of treatment for ER+ cancer. All the best to you!
  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    LIsa

    also a thread on A Se's SPECIFICS - just to make it a bit easier to new women to find the specifics. Hopefully, you won't ned any of them, but if you do, please know you are not alone, and don't let any of your doctors tell you that you are.  There are still some doctors, not many, but some, who don't know as much about the se's of these meds as the women who are taking them.  Best news, all the studies have shown them to be very effective.  

    You will feel so much better without those drains.  Almost my most unfavorite part of the whole thing!  Good luck on your journey.

  • Char2010
    Char2010 Member Posts: 362

    Hi LisaGH - I have been on Arimidex for 10 months. Started with the brand and after about four months switched to generic. I do get stiffness in the hands in the morning - other then that pretty good so far. I walk quite a lot and recently started to work out with a personal trainer - worried about my bones. Hope all oesbwell for you asvwell.

  • lago
    lago Member Posts: 11,653
    Char I too have the same thing, stiffness in hands in the morning. I'm into my 5th month. BTW did you ever find the Anastrozole from Israel instead of India?
  • KittyDog
    KittyDog Member Posts: 656

    Well my one week break from Femara is over.  Tonight I will take my first arimidex.  I will be using generic too.  Hoping my finger pain is better on this one.  I have decided that the Lyrica must have been helping with the hot flashes.  I was suppose to try coming off of it to but I can't.  The neuropathy in my feet hurts to much on the days I wasn't on it...I also had major hot flashes and couldn't sleep.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    Kittydog

    I'm interested that you are switching from Femara to Arimidex - I was thinking of going in the "other direction" A to F.  Just wondering if any studies have been done on the different SE's of the 3 AI's. I know Femara & Arimidex work in a very similar way, think Aromasin is a little bit different.

    Wonder why we don' thear of more women on Aromasin?  Anybody know anything abot comparing the Ae's of the three of them?  thanks.

  • kira1234
    kira1234 Member Posts: 754

    It's interesting about the 3 Al's. My Onc. told me if the SE's got to much for me he would change me to Aromasin. I guess it has some steroids in it. So far I am on Femara, and really don't want to find out if the SE's on something else are worse. For me they are annoying, but i can deal with them.

  • KittyDog
    KittyDog Member Posts: 656

    All I was told by the NP was that sometimes when we switch some of us will have less effects.  I am just hoping that is my case.  Woulf be intresting to see if there are any studies.

  • Char2010
    Char2010 Member Posts: 362

    Lago - No, still getting the generic that my local pharmacy sources.  Just so convenient.  May start calling around again.

  • slousha
    slousha Member Posts: 181

    Hi

    I copied some month ago this article:

    Br J Cancer. 2011 Mar 29;104(7):1059-66. Epub 2011 Mar 1.
    Differences between the non-steroidal aromatase inhibitors anastrozole and letrozole - of clinical importance?
    Geisler J.
    Source

    Institute of Clinical Medicine, University of Oslo, Faculty Division at Akershus University Hospital, Sykehusveien 27, Lørenskog N-1478, Norway.
    Abstract

    Aromatase inhibition is the gold standard for treatment of early and advanced breast cancer in postmenopausal women suffering from an estrogen receptor-positive disease. The currently established group of anti-aromatase compounds comprises two reversible aromatase inhibitors (anastrozole and letrozole) and on the other hand, the irreversible aromatase inactivator exemestane. Although exemestane is the only widely used aromatase inactivator at this stage, physicians very often have to choose between either anastrozole or letrozole in general practice. These third-generation aromatase inhibitors (letrozole/Femara (Novartis Pharmaceuticals, Basel, Switzerland) and anastrozole/Arimidex (AstraZeneca, Pharmaceuticals, Macclesfield, Cheshire, UK)), have recently demonstrated superior efficacy compared with tamoxifen as initial therapy for early breast cancer improving disease-free survival. However, although anastrozole and letrozole belong to the same pharmacological class of agents (triazoles), an increasing body of evidence suggests that these aromatase inhibitors are not equipotent when given in the clinically established doses. Preclinical and clinical evidence indicates distinct pharmacological profiles. Thus, this review focuses on the differences between the non-steroidal aromatase inhibitors allowing physicians to choose between these compounds based on scientific evidence. Although we are waiting for the important results of a still ongoing head-to-head comparison in patients with early breast cancer at high risk for relapse (Femara Anastrozole Clinical Evaluation trial; 'FACE-trial'), clinicians have to make their choices today. On the basis of available evidence summarised here and until FACE-data become available, letrozole seems to be the best choice for the majority of breast cancer patients whenever a non-steroidal aromatase inhibitor has to be chosen in a clinical setting. The background for this recommendation is discussed in the following chapters.

    PMID:
    21364577

  • slousha
    slousha Member Posts: 181

    Hi ladies

    If you didn't found, its  from BCO all about  SE's

    Hormonal Therapy

    Comparison chart

    Side Effects

    Greetings

    Usha

  • gasurvivor2011
    gasurvivor2011 Member Posts: 150

    Hi all- I am 3 days into Arimidex (and just 4 days post exchange surgery). So far, I feel a little stiffer in the muscles/leg joints. I am making myself walk around the house and out in my backyard (when the heat is not bad- in early am or evening). It does seem to help to make myself move more- same as when the taxotere did similar thing.

    I wanted to start on this while I am off for my surgery- that way hopefully I can get used to it b/f I go back to work in a week or so post surgery.

    Hope I can manage side effects if I get any...will look for the other threads too. Being highly estrogen positive- 99 percent!!! Not kidding- think I need to try to hang in.

  • tinat
    tinat Member Posts: 2,235

    LisaGH:  I've been pretty lucky so far.  Had a rebound of migraines, which have always been triggered by changes in my estrogen levels.  More teary days in one month than I had the entire time from diagnosis to start of anastrazole.  Flare of acne.  Some weird knuckle pains in one hand.  The good news is that each of these symptoms seems to be improving.  I do walk 30-60 minutes and work out with some light weights every day.  I've heard both that symptoms may appear then level out and/or that the worst symptoms start at about 3 months.  I'm right at 3 months so I'm hoping that I'm in the first group!

    Fingers crossed for you...

  • nativemainer
    nativemainer Member Posts: 7,923

    While the AIs are very similar in their side effect profiles, individual women wlll react differently to individual drugs in the class.  Its the same thing that happens with pain medications-- a person can take morphine and get hallucinations, itching, severe nausea and vomiting, or other severe side effects but take hydromorphone (dilaudid) or codiene without those side effects.  For a long time medicine has been using the approach of changing narcotics if troublesome side effects appear until one is found that does not have the SE for that person.  The same happens with the AI's (and antibiotics and blood pressure medications and lots of other classes of drugs).  Small differences in the chemical construction of a drug can make a big difference for an individual. 

    It also takes years of general use of similar drugs to develop a clear picture of the difference in long term effects. The AI's are just reaching the "going generic" stage, so that body data is just getting to the point where differences between the AIs can be found.  It's an interesting and exciting time to be following all this research!  

  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    Thanks to all for your posts - slousha, I printed out what you posted so I can read it slowly.  It seems to take ages for my unscientific brain to 'digest' stuff like that.

    Kira - you said something so true for me, when I think of switching. "Better the devil you know..." just so afraid of some new SE starting.  

    Well, my 4 year mark is in August, and I go back for a routine checkup.  We're going to talk about switching - and I'll let you all know what I learn. 

    LisaGH - I love your picture.  You look like me 4 years ago.  I have one of me, when I used face paints to paint my head with smiley faces...note: those paints aren't sweat proof, it was August, and a lota drips, but fun!  Hope you are doing well, and healing fast.

  • shells43
    shells43 Member Posts: 499

    I know I should post this question in the Effexor thread, but it is pretty slow. Have any of you on Effexor had mouth sores? My lips are getting blistered and the corners of my mouth are starting to crack, ow. I just read this might be an allergic reaction or side effect. I don't get canker sores, so this is really unusual for me. I just started taking it twice daily instead of once a day (37.5 mg x 2). Of course I read this AFTER I took my second dose today. I might go back to once a day!

  • revkat
    revkat Member Posts: 122

    Alrighty, help me out here. I've been on Anastrazole for exactly six weeks. I followed the Claire plan of continuing to exercise regularly and vigorously (5 days a week for 1 hour, mixing up types of cardio and light lifting). I'm taking D3, fish oil, CoQ10. I've felt a little stiff on getting up and notices some joint popping, but nothing I couldn't live with. Today I was almost crying from pain in my hips, neck, and "good" shoulder. It was like someone was sticking me with red hot rods in those joints. I took some Naproxen Sodium and am planning to take that round the clock for a few days. Is this the start of problems? Is there any possibility that is will get better, not worse? Oh, and I won't even mention the vaginal atrophy issue. ACK. I was going to be one of those people who didn't miss a step with this med!

    Shelley, I'm on Effexor and have never had those side effects. I haven't heard others complain of them either. I think you should talk to the doc who prescribed it or to your pharmacist. In the mean time keep your lips well lubricated. 

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793

    I am sorry Revkat.  Sounds like no fun at all.  I am just fine with the anastrazole.  Well, I do have a bit of knee tenderness, but nothing major.

    However, hard to notice as just completed the Seattle-to-Portland which set back my ankle healing a bit.  (But fortunately, just strain, not a re-injury.)  So that is really hurting, and the walk I just took made it more tender.  Things usually get better by Thursday, so two days to go.

    Recently tested out the other area and it is fine too Laughing

    We won't talk about some of the other places I hurt...... - Claire

  • Enjoyful
    Enjoyful Member Posts: 278

    Revkat -

    I have the same symptoms!  To me it feels like my arm's being pulled out of its socket and I have ground glass in my hip joints.  Here's what works for me - 1 celebrex taken with 1 hydrocodone, after a meal, around 11am.  Sometimes I have to take another hydrocodone in the evening.  Long soaks in a warm bath help, too.

    I really hate Arimidex.