Arimidex - Coping with the SE's

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  • Rocket
    Rocket Member Posts: 1,197
    edited March 2011

    April 15th will be my one year anniversary of starting Arimidex.  I still have joint pain every day, but like Ruthbru, I will continue to be thankful for this drug.  It is a big gun in my arsenal as I'm 80% ER+.  I will take it for as long as I can and longer than 5 years if the research proves it to be effective.  I had a lot of problems with trigger thumb and still struggle with carpal tunnel as well.  I've had cortisone shots in my left thumb which did help.  My right thumb can't get shots because of LE, however it is better since time has passed.  I experience at least 5-8 hot flashes and night sweats daily.  I take both Effexor and Neurontin for hot flashes and nerve pain.  I still have a lot of shoulder, hip and knee pain.  Med onc did a bone scan to check some new back pain that I was experiencing a couple of months ago and thankfully it only showed degenerative changes but NO CANCER!  Relief just overwhelmed me!  I sobbed like a baby at the good news.  Taking an AI is no picnic for me, but the alternative for me would be worse.  Psychologically it has helped me greatly with anxiety.  I know that I'm doing everything that I can to prevent reoccurance.  I can understand why some of you come off of it and I also understand those of you that remain on it.  It's a very individual decision.

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

    It's crazy how one's perspective changes, isn't it? At my last checkup I had my GP check a spot on my skin that looked 'different' (which in my mind immediately equalled skin cancer). I could have hugged him when he said, "Oh, that is just an AGE SPOT".....how horrified I would have been by that statement a couple of years ago, and now I was THRILLED!

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  • sacphotomom
    sacphotomom Member Posts: 366
    edited March 2011

    I to have been having joint pain since starting Arimidex ..But you all are right the days I feel it the most is when I don't exercise ..while I work I get up every once in a while to stretch so I don't get stiff.. it really helps.

    Its really crazy, my favorite drink is wine and I avoided it through out Chemo and Radiation .  Now when I drink it I have a hot flash.  and I break out with this dang heat rash.  I think I'm going to have to move up to the mountains during the summer to stay cool...I dont want to give another one of the things I enjoy. 

     I have started the Replens on day 3 and so far I haven't had any that burning that I have heard of..hope it will stay this way and be good for me.. I'm not ready to try sex with my DH not just yet but I guess I have to give it a go one of these day to see if it is really working..now if I can just get the libido up too!

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  • lago
    lago Member Posts: 17,186
    edited March 2011
    sacphotomom the Replens isn't an instant fix. It can take several weeks but gradually gets better so doing give up on it. Give it at least 6 weeks. Those who get the burning get it pretty quickly.
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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2011

    I just got a period on Sunday....I know one of the side effects is vaginal bleeding.

    Not sure if my menopause status has changed or if it is a true side effect.

    I posted asking if others have had this happen but no one has responded. Frown

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  • burley
    burley Member Posts: 631
    edited March 2011

    Hello all.  I started Arimidex on March 7th, and my biggest complaint so far is severe dry skin.  My fingertips have peeled off, and it's moved down to the palms of my hands.  And about 5 days ago it started on my feet, from the tips of my toes to my heels.  This is AZ, so we wear flip flops everywhere.  I saw my Onc last week and he didn't know if it was a side effect or not, but gals on the other thread have experienced dry skin too.  Onc said to use more lotion.  Duh.

    I've been having severe hot flashes since the start of my chemo last year in February, but they've been noticeably worse since starting this new med.  I'm already on Pristiq, and didn't know it would help with them so yay!  I guess that means they could be worse.  Of course, they will be considerably worse when it hite 115 degrees this summer.

    I'm also going through some mood swings, mostly problematic when I'm driving.  I want to beat the crap out of everyone who tailgates me!  Luckily the farthest I have to drive is doctor's appointments, and those are only every other week or so.

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

    Burley I always wanted to beat the crap out of people who drive like assholes… for about 20 years.

    I have noticed the dry skin too especially my feet. They get really dry, flaky and cracked. I'm using this on my feet and it seems to work well. (Click on image to go to Sally store online)

    http://ecx.images-amazon.com/images/I/51Ztn%2BIsBEL._AA300_.jpg

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  • sandiddstn
    sandiddstn Member Posts: 88
    edited March 2011

    Burley... glad you brought up the mood swings...  I too, have them.. but I cry, like a baby... onc prescribed effexor and just wandering if any of you all have taken it or heard of it and the se's it has and does it really help....Posted on another thread but thought I would here also...  If anyone has taken it please let me know if morning or night time is best...Thanks.. 

    By the way only been on Arimidex since March 2nd...  

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

    I've been taking Celexa with good "mood" results, but it doesn't help with the hot flashes.

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

    Lago,

    that's what I use on my feet too ;)  really helps.  Use Coconut Oil ( whole food brand 365) all over the rest of my body.  Only thing I've found to keep my skin from just peeling off.

    The AI's - tamoxifen too - are really messin' with our hormones!  Any doc who doesn't acknowledge this, is, well, a man.  I was taking an antidepressant for Plain Ole Garden Variety Clinical Depression - can't imagine going thru bc treatment and having a woman NOT get effected by this hideous process.   I'm actually grateful I was already, for years, taking an antidepressant!

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  • sandiddstn
    sandiddstn Member Posts: 88
    edited March 2011

    enjoyful, the hot flashes are not to bad yet but the crying......man sometimes it hits me out of the blue..and this is not me... where did me go...

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  • writerchick
    writerchick Member Posts: 19
    edited March 2011

    Wallycat, I did not get a period, but twice I've had bleeding. My gynecologist said Arimidex made my skin so thin that it was tearing. It heals, but I was glad I had it checked out.

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

    Wallycat, you should NOT be getting your period. You should only be taking Arimidex if you are post-menopausal & you can't be post-menopausal and still get your period. Definitely get it checked out.

    As for the mood swings....how could we NOT have them?! The adjusting to the lack of hormones (plus the lack of hormones themselves).....and I think the whole 'cancer experience' really hits you after the most intense treatment phase is done. After keeping it all together during the initial diagnosis, surgery (or surgeries), chemo, rads etc.....you now finally have time to catch your breath.....and then it you have to process and make some sense of the whole thing....that is very hard work emotionally.

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  • lago
    lago Member Posts: 17,186
    edited March 2011
    sandiddstn effexorXF is mentioned in my chemo binder for hot flashes. It's an anti-depressant but is given specifically for hot flash management in low dosage. I would think if you are depressed too they may consider upping the dose to cover both the hot flashes and depression but I'm not sure.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I agree with Ruth.  The years following the initial treatment are a learning process.  I know I was in Full Fight Mode for so long, and one of the wonderful nurses really helped me learn to live with the "new" way of slow healing.  Just a really "different" life than it was before bc - and in hindsight, learning to LIVE after the major treatments weer finished, was quite a challenging process.

    I still wake up some morings - and in a strange feeling way, I'm shocked to realize I had bc!  Sounds crazy, I know, but it's true - even b4 the creaky get out of bed first steps....until I get into motionTongue out

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  • Grayt
    Grayt Member Posts: 40
    edited March 2011

    So helpful for me to read of the commonality of my weird feelings/symptoms!  Not to say, mind you, that I'm glad someone else is suffering, but we sisters have a real understanding of what we're dealing with and can support each other in earnest.

    Getting used to a different way of life is a good suggestion.  I think, for a long time, I was thinking of this whole BC experience as a temporary inconvenience and wxpected to return to "normal" after a few months of doing what I was told.  Near the end of chemo, I had this weird realization that "I" was gone and someone else had taken up residence in my body.  The person I'd been for 60 years has slipped away in the night without so much as a good-bye.  I had a difficult time with this emotionally and still do from time to time.

    I suppose it's an opportunity to re-invent myself but I don't want to hear that from anybody who's not experienced this!  Frankly, I was pretty content with who I was and I find it a scary and laborious prospect at my age.  There's sometimes a little comfort in the thought I don't really need to know who I am; just take life a day at a time.  But I don't really believe it.

    BEst to us all today - Gray

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2011

    Hi and yes, I am aware of the fact that I need to be post meno.

    I was on tamoxifen for almost 3 years and had no period.  Blood values showed menopause status in 2010.

    I switched to Arimidex because my onco gave me samples (about 4 months worth)..thinking it would go generic in 2010 but it did not, so I started on tamoxifen again.  Spotted in Jun, then july then August of 2010 so had an endo-biopsy...clean.  Spotted again in November but figured it was the pill they used to dilate me for the endo biopsy.  Switched to Armidex once it went generic this year, and had spotting again this month. 

    My onco thinks it is just the "vaginal bleeding" side effect that Arimidex indicates is possible, but I personally am not so sure.  I will be 54 in May and would love to be assured I am in meno, but I have read so many tales on the web of women who are post meno for years and end up having a period a few times.  Some are 60 Surprised !  

    I guess I'm just glad I have 3-3/4 years of anti-hormonals under my belt.  Maybe just stopping it all is the best thing for my body.....sigh.

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  • marybast
    marybast Member Posts: 138
    edited March 2011

    anniealso, I just read that Replens gave you a UTI. Me too! I'm now on a kick to eliminate parabens from everything that touches my body. Not easy because parabens and other chemicals are in many if not most personal care products (shampoo, etc.) including Replens, but I'm working on it. Have found two "personal moisturizers" that are organic and chemical-free, both water-based: Sylk and Emerita. I'm becoming partial to Emerita (from www.naturalhealthyconcepts.com) -- it's made from aloe vera gel, Calendula, Vitamin E and Ginseng.

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

    sandiddstn--crying that hits you out of the blue can be a symptom of Post Traumatic Stress Disorder (PTSD).  It's estimated that 3/4 of cancer survivors have PTSD to some degree.  If an antidepressant isn't helping, there may be an element of anxiety, which can need a different type of medication.  Counseling can help sort out depression from anxiety from PTSD.  I hit the jackpot and got all 3. Great fun to manage sometimes. 

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  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited March 2011

    sandiddstn

    Effexsor worked like a charm for me - I was crying uncontrollably for no reason and once I started, I couldn't stop - I ended up at 75mg - they start you at 37.5mg and step you up - usually to 150mg, I stopped at 75mg and got relief for both the crying and the hot flashes.  We added Xanax at .5 mg for the anxiety and I must say that a year and a half later - same dosage and it is all still working wonderfully. 

    Since I don't ever plan on being able to do without the pharmaceuticals (I am stage iv) I am not concerned about coming off of it.  It is one drug you cannot just stop taking, you have to step down just as you stepped up to stop.  As long as you do that, the ill effects are almost nothing at all. 

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  • sacphotomom
    sacphotomom Member Posts: 366
    edited April 2011

    Lago thanks for the news that it take a while  .. I wasn't thinking it was a quick fix but I was wondering how long...good thing to know..

    About crying... I have had spells where anything can make me cry  .. then I will go for a while just fine..for me it comes almost like a period.   then I get frustrated with everything that I'm not supposed to eat and or do.. and it starts again .. I haven't started any pills for it yet. some days I think I need them, then I have days where I can feel almost normal. and think OK I don't need them .

    Grayt..I too thought it was going to be a inconvenience for a year but . it was about 1/2  through chemo that I realized that it wasn't going to be. Or maybe it was the first time I had a ghost breast move when I turn over in bed.. that was the weirdest thing!!  That made me miss my breasts.   I have not had any recon will talk to PS later this year ..right now I don't want any Docs touching me..  

    OK wow its late time for bed 

    Goodnight Ladies!

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  • zenith4289
    zenith4289 Member Posts: 170
    edited April 2011

    wallycat and writerchick - i had some lite bleeding and knew it couldn't be a period.  Skin on the labia was bleeding.  Just got too dry so I used some antibiotic ointment.  so far it's cleared up.  arimidex has caused dry skin elsewhere.  One on the NP's I saw said they may recommend arimidex for 15 plus years.  I just can't imagine having 7-14 hot/warm flashes a day for 15 years!  I am afraid of effexor also because i have read so much about how hard it is to get off of it. 

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  • nurseronda10
    nurseronda10 Member Posts: 209
    edited April 2011

    I took my first dose of Arimidex at 7  p.m. last night and woke up during the night with my legs itching and noticed a rash over entire body when I woke up this morning.  Also my throat had a burning sensation all night.  Will call my oncologist first thing Monday morning.  I do have a history of eczema but this rash looks different.

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  • nurseronda10
    nurseronda10 Member Posts: 209
    edited April 2011

    I took my first dose of Arimidex at 7  p.m. last night and woke up during the night with my legs itching and noticed a rash over entire body when I woke up this morning.  Also my throat had a burning sensation all night.  Will call my oncologist first thing Monday morning.  I do have a history of eczema but this rash looks different.

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

    nurseronda I wouldn't wait till Monday. Sore throat isn't unusual from what I have read. Can you email, page a nurse or something just to check it out?:

    "Some side effects may mean that you're having an allergic reaction to Arimidex. If you have any of the following symptoms, call your doctor immediately:

    * rash or hives"

    source link  

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  • wenweb
    wenweb Member Posts: 1,107
    edited April 2011

    I ditto Lago.  Don't wait until Monday, or take another dose, the SE's could be worse than the first dose.

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  • balsie
    balsie Member Posts: 391
    edited April 2011

    I read somewhere ... that if you are taking effexor (sp)  that you shoudn't take ibuprofen...is this true?  What do you take for pain or is this not true? Can you take ib's with effexor?  For those of you who are on effexor...when do you take it morning or evening with arimidex or at a different time?  When you first started it did you feel lightheaded?  I know lots of questions but who else to ask other than all they experts on here.  Have a great day everyone!!!

     Enjoy,

    Balsie 

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  • nurseronda10
    nurseronda10 Member Posts: 209
    edited April 2011

    Rash is almost gone....only a few places left on my legs.  I'm definitely not taking anymore until I talk to my oncologist.  Did call to see if she was on call, but a physician I don't care for was on call instead so will wait til Monday.

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

    nurseronda

    you might try taking a benadryl atihistamine - and see if that helps.

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  • Cynthia1962
    Cynthia1962 Member Posts: 1,424
    edited April 2011

    I switched from Tamoxifen to generic Arimidex in Nov. after being diagnosed with mets.  At first, I only experienced a few more hot flashes and aches.  Now, I have whole days where I seem to hurt everywhere.  My bones are literally hurt from pressure and my muscles are achy.  Is this from the Arimidex or could it be from Aredia which I began in January?  There's no sign that the mets are progressing, so I think this is meds related. 

    I also experienced the burning sensation someone mentioned the first time my hubby and I were intimate after beginning the Arimidex.   I was wondering if anyone had tried Vitamin E suppositories for it?  The Replens seems expensive, especially if it has to be used consistently.

    Oh, and one last thing.  lol  My eyebrows are thinning to the point that I have bare spots.  Could this be related to the Arimidex, too?   My onc asked me if I had experienced any hair loss at my last appt because it's an issue for some women on Arimidex.  So far, the hair on my head seems okay.  I hope the eyebrows aren't a sign that all my hair will thin.

    Thanks for helping me sort ths all out.  It sure can be challenging at times.

    Cynthia

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