Arimidex - Coping with the SE's

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  • DebbieD3
    DebbieD3 Member Posts: 1
    edited March 2011

    Hi:  I have been taking Arimidex for 3 years and have been having problems with tendons, especially in my feet. Has anyone else experienced this?

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  • lago
    lago Member Posts: 17,186
    edited March 2011
    Debbie I was told by my the onc NP that I might experience bone/joint pain in the small joints like hand and feet in the morning. Is that what you're feeling? Does it go away when you start to use them?
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  • nwest125
    nwest125 Member Posts: 240
    edited March 2011

    my hands are swelling at night and get better after I get up . Is this a SE of arimidex. I have been taking it for about 2 months and this just started last week.

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

    nwest125 - yes, for sure that can be one of the se's.  I find my hands may also swell when they are hanging by my side as I take walks.  Then I just raise them above my head for a bit and they are fine. 

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

    I though my fingers were swelling because the weather was warmer. The only reason why I noticed is my rings got a little tight on the right hand and my compression glove seemed a little tight… and I'm on a low dose diuretic too.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012
    Fingers are definitely swelled ( is that a word) - don't wear rings anymore.  Also, slipped on ice a few months go, tore/strained muscles & tendons and is taking a VERY LONG time to heal - I refuse to attribute it to age ( 66 this month) so I'm blaming being on the A  Team.  If you are in Western MA and smell Tiger Balm, it's me Kiss
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    LOL, Caerus.  At least that's one benefit we have for being on the A team - we can blame everything on it.  So at 62 here the reason I can't stay awake until the wee hours of the morning and play on this puter is because of A!  That's my story...

    Uhhhhhhhh, night all.

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  • weety
    weety Member Posts: 1,163
    edited March 2011

    lago, I saw you mentioned you were on a diuretic.  How did they decide to put you on that?  How does one even know if that's the problem?  I'm wondering because of the weird fluctuations in my weight and poofiness.  One day, my ring will be slipping around my finger and 2 days later, it feels tight.  I'm wondering why it seems to be inconsistnet, though.  The weight can vary day to day by about 3-4 lbs, too.

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

    Weety The swelling got so bad that I could no longer get my feet into many of my shoes, my legs were shiny, my ankles had disappeared, my jeans were getting tight even in the lower leg, torso and arms were also very swelled. At that point I had put on 7-8 additional lbs in fluid and it wasn't going down. That was 3 weeks post last chemo. My onc put me on a very low dose… I cut this tiny pill in half for a month.

    I went off it for 2 days and put on 4 lbs so I called. I'm on it for another month. Dropped the 4 lbs once back on it but I'm still a bit bloated and the legs are still shiny. I'm not sure if my weight is up or not though because I have been working out and cutting back a bit on food. So I'm thinking that I might have actually lost 1-2lbs but because of the fluid I can't tell.I

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  • carolehalston
    carolehalston Member Posts: 6,887
    edited March 2011

    I've been on the little white pill for a year and a half and lately my night sweats have gotten more intense.  I take Effexor and the hot flashes have been mild from the very beginning.  Don't know what the reason is for the increased heat.  I have noticed that I sleep better and don't wake up with the night sweats as much when the air is cold in the bedroom.  During the winter, we open a bedroom window.

    Oh, well....

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  • lago
    lago Member Posts: 17,186
    edited March 2011
    Carole I would ask your onc about that. Maybe your estrogen is now fluctuating since you've gone off the pill.
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  • sacphotomom
    sacphotomom Member Posts: 366
    edited March 2011

    Caerus..Coconut oil and cocoa butter..  that would only make me want to eat more sweets! lol..I don't need an incentives for that..But might try it any way.. sounds really good warmed up . .

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  • sacphotomom
    sacphotomom Member Posts: 366
    edited March 2011

    Patoo.. I go to my ONC this week for my 3 month checkup.. so I will discuss it with her then..I have noticed that a this week I am having a less severe rashes.. but its been really cold here and rainy.. so that might be it too.. I am still dreading the summer.. if this rash continues. 

    I have only 2 temps, cold and hot..don't seem to have and in between.. So night sweats have not been a problem for me .but I guess I have been drinking to much water trying to combat the swelling and water retention .having go to bathroom a couple of times a night ..I'm having a good weekend this weekend my pant fit looser.. I do go up and down a lot.. My arm swells to when I go for my walks ..haven't had problem with my feet though. But since I'm working form home these days I don't wear shoes that often either...I guess I'll start putting on other shoes besides tennis and slippers and see what happens.. you all got me wondering.

    Have a great day! 

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  • heavenschild
    heavenschild Member Posts: 212
    edited March 2011

    Okay, this is a delicate subject but I feel like everything now has dried up *down below* and I am wondering if anyone has had the same experience.  Seriously wondering whether this is worth it beween the anxiety, tiredness, joint achiness, now THIS? 

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

    heavenschild--the dryness *down below* is NOT a delicate subject, not on this thread, since it's a common side effect of the A.  The subject is one that comes around preriodically.  It's time it came around again.  I do have vaginal dryness, but since I'm not sexually active it's not an issue for me. Many others here have healty sex lives and have had really good adivce, I'm sure they'll be along shortly.  There are solutions for this, I remember reading about them, I just can't remember what they are! 

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  • kira1234
    kira1234 Member Posts: 3,091
    edited March 2011

    It's funny this subject came up today. I saw my regular Dr. yesterday, I asked her about it hurting, and the things I have tried so far aren't working. She looked at me like I  had 2 heads. Her response was I need to do some  reseach into how to deal with that issue. She actually asked if I wanted Estrogen!!!!!!!!

    As far as things to try, I get some relief from replens, but doesn't really help with sex. I'm very glad my husband is so understanding. The other thing I do is take a cranberry pill daily to fight infections which I was having weekly from the dryness.

    Go to the MOJO board they have lots of good ideas. I'm only 5 months into this myself so I am learning as well.

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

    I'm also using Replens. First every day for about 3 weeks. Now just 2x a week. I also use Astroglide. Seriously though I found the more you use it the better. Consider getting a vibrator if you need to… especially you single ladies.

    I'm not to bad. Mine was from chemo. So far I don't think it got worse on Anastrozole but I'm only on day 23. Still doing OK but wondering if the slight heartburn is a SE from the drug or left over from chemo. Still can't figure out which foods trigger it ( well except chocolate).

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

    check the MOJO thread....lots of good ideas there. Dilator therapy has been helpful to some of us. (I have a long post about it on the Mojo thread.....late December, early January, somewhere in that time frame).

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  • heavenschild
    heavenschild Member Posts: 212
    edited March 2011

    Thanks ladies! 

    Lago - I'll get some Replens.

    ruthbru - If I can remember (another casualty of CA has been my memory) I'll go to the MOJO thread.

    kira1234 - time for a new doctor...

    Thanks God for this site! 

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  • lago
    lago Member Posts: 17,186
    edited March 2011
    And when I said "use it" I didn't mean just the Replens… I mean use it Tongue out
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Coconut oil - a ittle bit every night, and every morning - it's in solid form, and melts very quickly, so probably need a panty liner.  I use Whole FOod 365 brand, sold in the vitamin section, and yup, it smells lilke coconut.

    I now use it ALL over my body - and is the only thing that has helped the horrendous dryness all over.  Replens stings when I try to use it.  Those bead things were awful.  Some women have tried Crisco, but I love the coconut oil.  good luck.

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  • kira1234
    kira1234 Member Posts: 3,091
    edited March 2011

    I've been using coconut oil over my body, infact someone talked about using it in the shower which interested me. Never thought of using it there. Replens is messy as well. Is it worse than the replens? At least coconut oil smells good.

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  • turtle42
    turtle42 Member Posts: 139
    edited March 2011

    Glad I found this thread. I will be starting Arimidex this week. Just got off tamoxifen because I had a rare side effect from it, really low blood counts so no it's on to Arimidex. The weird thing about stopping tamoxifen is my hot flashes actually got worse off it. Not sure why but the onc said that in some women it can act more like estrogen. Hopefully they wont get worse on Arimidex than they are now. So I will be reading the whole thread from page one to the end tonight.

    Thanks for all the great info.

    Jackie

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

    patoo....I was very disappointed to learn that the potato breads I have been buying since coming home to Minnesota do contain wheat flour.  On the east coast, I always bought the Amish breads and potato was potato...period.

    I was at the store and starting reading all the labels - the only one that list potato flakes in the main ingredients section (not the 2% section like all the others) is the Pennsylvania Dutch Style Potato Bread.  In does have the same wheat flour but DOES NOT have wheat gluten as an ingredient which all the other breads did - not just the potato bread. 

    So, there is wheat (which contains gluten) but there is no added gluten as with the other potato breads and the potato flakes are listed as the 3rd ingredient along with potato flour whereas all the other potato breads do not list potato flakes at all but only potato flour in the area of 'contains 2% of the following...blah blah blah. 

    This was at a regular grocery store - I am sure that a natural foods store would have better offerings.

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

    Thanks Lowrider54, I'll check around some more.  I do have an Amish store not too far from me (although I'm not certain how really "Amish" they are).  Been planning on going down there for a while anyway so we'll see.  I'm really too lazy to try for a totally gluten-free diet but if I can cut out much of it I think that's moving in the right direction.

    kira, ditto heavenschile - be careful of that doc!

    Welcome turtle42 and any others I may have missed (just can't stand having to scroll so much now). 

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

    Lowrider,

    I know what you mean - wheat gluten is often "hidden" where we'd least expect it.  I used to buy Ezekiel ( forget my trying to spell that one) bread at Trader Joe's - until a friend suggested I read the label: oat grains, all the good stuff - and then, "ADDED WHEAT GLUTEN" - WTF?  that's when I went to Brown Rice Bread ( doorstop dense) - and then to a cook book about Gluten Free Baking - and rarely buy anything premade now.

    Meant to ask you - are you still doing acupuncture?  I hope it's helping.  I go once a month, and know it's keeping those joint pains away for me.

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  • Grayt
    Grayt Member Posts: 40
    edited March 2011

    Whoa!  Eight months on Anastrozole with managable joint pain.  Now feel like I've been run over by a very long train, both physically and emotionally.

    Looking forward to catching up on posts since my last.  Best to all - Grayt/Brenda

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited March 2011

    hi all, long time no post!

    Got the AOK from both Onc, urologist and my GP to use a very lo dose (brand new) of estrogen replacement cream.  I thought it was nuts, but since I've been so estrogen deprived on A, it should not make much of a dent in my blood levels but will help with our nonexistent sex life.

    Replens gave me a UTI every time I used it.  I use KY sensitive jelly and "very private" moisturizer, both are great.

    Will let you know  how the ER cream/new lo dose tab of vagifem works.  Was OKd to use the tiniest, lowest amount, and it scares me, but all assured me it's not an issue.

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

    Caerus - yep, still doing acupuncture - pretty much once a week.  We tried skipping a week but I am not ready for that yet so it is once a week for the time being - the pain has totally stopped radiating down the leg and has started to decrease greatly from heading off to the left of the disc and wrapping around the hip.  I have been doing some of my old exercises from the chiro days to get some muscle strength back and the bed top yoga.  The ortho neurologist is pleased and dosen't want to see me again until August so thats good. 

    Oh, and this gluten - a full blown gluten free diet is just about impossible due to that 'added wheat gluten' something like 'soy'.  Its just trying to do the bigger things that will help a great deal with the joint pain - enjoy more fruits and veggies, and generally, just a healthier diet will make a huge difference - it even comes with some weight loss as a bonus! 

    anniealso - I just cannot do it - no estrogen for me at all.  I totally rely on that once I got my body back into the groove with the help of the Karma Sutra - I have no issues anymore...the body has recovered and is functioning on its own quite nicely.  I was chemo-induced menopausal at 44-45 and by 46 - 51 (significant other died in 2006) was having the best sex of my life without any hormone replacement - and now at 56, all is reactivated again (thanks again to Karma Sutra) and sex is not a problem without any aid at all. 

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

    Lowrider

    SO happy for your getting relief from Acupuncture.  I too started at once a week - and after about 2 months, went to every 2 weeks - now at about every 4.  I fell on ice, surprise! a few times this winter and my left leg is still wonky ;(  Massage therapist has given me some stretches to do - she says my muscles/tendons need stretching - we both had a laugh, when she asked if I thought I had shin splints?  And I said "can you get them from standing up or sitting down?"  she laughed & said, she guessed it wasn't shin splints!!  

    I just avoid wheat gluten by not having bread, pasta, and don't eat any processed food.  I make my own Mango chutney, mustard from powder, and organic salsa on my eggs.  Fruit, when available, and brown rice, quinua, and veggies.  Can't wait til summer - there are organic farms all over here - and a friend grows the most delicious raspberries!  Oooohhh...standing in the sun shine eating rasperries as you pick them....heaven.

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