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

PontiacPeggy

SusieQE, glad that you are normal (always reassuring). Sounds like your MO is a keeper, too. BTW, if you fill out your profile and make it public then you don't have to write your history every time It certainly helps us know where you've been. I'm curious, were you tested for the BRCA genes? Hope all returns to normal with no further palpitations!

HUGS!

PontiacPeggy

Susie, that's interesting about the kelp. I'll keep that in mind. Was your leg pain in the muscles? I had something similar when I was on statins (which I will never take again). Not sleeping is definitely not good. Did the joint pain go away or did you figure out a way to kill it?

HUGS!

SusieQE

it was not like statins! I was put on Lipitor a few years ago. OMG! Saw a rheumatologist and finally a neurologist before we figured it was the Lipitor. They weren't admitting much back then. I am on pravastatin now. Water based and does not store up in your body.

The leg pain with the anastrozole was more of a bone pain but not excruciating. Lots of mild cursing and just bad enough to disrupt sleep. They don't know why iodine fixes it, just does

SusieQE

still have joint pain but I have fibro anyway so it is just a little more. But it has reduced a lot since I went off the blocker in August. If I have to go back on I will. Gotta do what you gotta do

PontiacPeggy

Susie, I think that's the attitude of most of us: Gotta do what you gotta do. Did Claritin help the joint pain? Sometimes it does. Hmm, wonder what the iodine does. Or maybe just not getting enough in our diets? Another little mystery to go with anastrozole.

HUGS!

april25

I was one year past menopause when I was DX'd. I'd had hot flashes and some night sweats pre-menopause, but nothing horrible. My MO's only warning about SEs on anastrozole was that I might get hot flashes. So far, I haven't noticed any!

I'd been taking statins and don't think I've had any SE's from them at all, thank goodness. You really can't tell what's doing to happen with these drugs! It's so unpredictable.

I just heard that statins interfere with flu shots on the news! Well... I have to say that I haven't had the flu in ages--maybe never! I rarely even get colds. (I was staying with my sister through chemo and she had a school aged kid who would get sick and they all would catch his colds, and I never got sick, thankfully.) So I guess if it hasn't messed things up so far I shouldn't worry that I just got my flu shot while on statins (low dose, I have to say). If statins help with osteoporosis, then, good! Nice to hear about some positive SEs!

I just have the stiff hands and stiff body at times... might or might not be due to SEs. If it gets annoying, I'll try Teva instead of Accord (which I'm on now). I still haven't got results back on my echo cardiogram, but I'm pretty sure I'm OK there. I haven't felt the rapid heartbeat for a while. But we'll see!

===

I love this forum for all the support and information. Sure, there tend to be more posts about SEs and problems than otherwise, which can make one a bit paranoid, but that passes. If you don't have the SEs or they are caused by other things, then that is that. I definitely want to keep ON this drug, so most aren't looking for problems that don't exist I think. Just answers. I think it works itself out. But it's good to remind people, too, that more people post with problems than just post to say that nothing is happening.

PontiacPeggy

April, I think that warning about statins and flu shots was aimed at the 65+ crowd (e.g. me). They now have us getting a super duper dose of flu vaccine and I wonder if the studies indicating this need didn't factor in the number of seniors taking statins. Then they went back and looked at the studies and had a lightbulb moment. I rarely get sick also. Amazing that you managed to stay bug free with kiddies bringing home the latest germs. However, I get sick every time I get a pneumonia shot. Since I'm allergic to most antibiotics I feel they are necessary. I just plan ahead now!

I had some morning stiffness before BC and that hasn't changed. It all works out.

HUGS!

ChiSandy

I’m 10 years post-menopausal (had a very early menarche and a late menopause, only one child--at 33, and I could only breastfeed a few weeks; so it’s no wonder my tumor tested highly ER+ and nearly 100% PR+). Had a devil of a time getting pregnant--deficient in LH, so had short cycles. As a result, my periods were frequent, longer, copious and painful. I was anemic most of my reproductive years. Perimenopause was hell--it ended with a SIX-WEEK period. Menopause itself? No symptoms at all, except for night sweating into my neck, which clipping my hair up before going to sleep took care of handily. Haven’t had my estrogen levels checked, but I wouldn’t be surprised if they were higher than normal for my age (going on 65). If they are, I might be in for a rocky ride on an AI. If not, then the SEs would likely be minor. I have artificial knees, so any pain I might get in them would likely be muscle or bone (no cartilage to inflame), rather than arthritis--which is likelier to hit my hands, hips, spine & ankles. But most of my friends on AIs (some older, some younger than me) report no side effects.

Still & all, my hair stylist knows to look for signs of thinning once I start letrozole, and says we can figure out workarounds. Chrysalis Hair (a wig salon in Chicago that serves only women with cancer-treatment hair loss, says they’d be willing to help even if my hair loss isn’t total and isn’t from chemo).

PontiacPeggy

ChiSandy, your reproductive years certainly were, ah, interesting! Hopefully, your AI journey will be uneventful. I absolutely can't tell if my mild hair loss is due to anastrozole or heredity. Mostly my hairline is receding a bit. My hair stylist thinks I'm being overly sensitive. I'm not actually sensitive - was just commenting. My grandmother's hairline also receded. Age plays a role, too, maybe. Oh well. I suspect my estrogen levels were low to non-existent given how I had virtually no SEs with menopause and none with anastrozole. So many variables.

HUGS!

maryland

Hi ladies, I am taking a 1 month break from Arimidex d/t joint (knees,feet,elbows) pain. I'm so tired of hobbling around like an old woman.Does anyone know how long it takes to get out of your system? I'm hoping to figure out if it's all from the drug or if a lot of it is just age and the fact that I've been on my feet cutting hair for 40 years. If I feel a whole lot better I may switch to Tamoxifen. Anyone else taken a vacay from their meds? I am doing this with my MO's ok.

Spookiesmom

I have. And felt much better. When I hurt really bad now, I just skip a day or 3. It works for me.

lago

tjh I am on Prolia for bones. I have had no side effects. I refused Zometa because it's an infusion. I have LE in one arm and the other is at risk. They won't infuse me in my foot. I just had my 3rd Prolia shot Tuesday. No problems

TwoHobbies

I read up on iodine after reading the kelp post. http://www.ncbi.nlm.nih.gov/pubmed/25211538 it also seems to help the cholesterol profile.

I've seen seaweed snacks and of course sushi rolls usually have a seaweed wrapper if you don't want to but a bottle of powder

I noticed my hot flashes decreased when my stress decreased so anyone suffering might try some meditation or yoga or tai chi. HowI figured this out is every day I would have my first hot flash at the light where I turn into work! (Yes work was stressful)

I occasionally pop on to recommend exercise for the aches and pains. When I increased my exercise the pains either decreased or became more tolerable.

warrrior3

In 4 weeks I will be finished with my 5 year RX of Arimidex. Needless to say I am feeling blessed. I am here today to ask for any and all experiences, comments, advise on what to expect. This past week I have become more focused on eating a healthier diet(I usually do) and exercise. Thank you in advance for your comments.

proudtospin

warrier, I ended my AL in 2013, have to say that it was like ending a thing like precnesone,. My MO said to just stop, no need to taper off but my advise to you would be to taper off. It was weird but I expect we should not be surprised. That first week was weird....but since all is dandy. My BP has dropped to a more normal point (I used to scare docs with how hi it would go even with my meds). Cholesterol seems about the same.

of course I had only just recently retired (Yahoo) when I ended the med, any hoo, good luck and congrats for getting to the other side!

proudtospin

yeah so I am now retired to I hang at my gym lots more than when working and have also dropped about 8 pounds without seeming to be trying!

ruthbru

I was done Sept 2012. I just stopped after the last pill with no strange effects. I didn't have horrible SEs while on, but I did notice gradually as time went along that I was less achy, had a kind of lifting of mood and energy (hard to describe because I did feel 'good' on it), cholesterol numbers are better, bone density (which had stayed in the normal range but was dropping) actually increased.....I did, and continue to, exercise like crazy, have kept the weight off......healthy eating has always been, and continues to be, a challenge. I was grateful that I could take it for 5 years & grateful to be done. Congratulations, Warrior, I think you will enjoy your post-Armidex life very much!

Golden01

For me, two or three weeks (to the day!). I just don't remember which.

sweetandspecial

Hi all - I haven't popped in here for a while but want to chime in with my basic experience for the newer folks. Early December will be 3 years on Anastrozole for me. I had some early SE's. Trigger thumb in both thumbs was the worst SE but it resolved by itself after a few months. I was about 18 months post-menopausal at the time of diagnosis (Sept 2012) so was already familiar with hot flashes (they didn't get any worse). Had some serious fatigue issues early on but that's not as bad anymore. I'm actually waiting right now to get test results from a sleep-study a week ago because I'm pretty sure I have sleep apnea. Actually hoping I have to get a CPAP device because I haven't had a good night's sleep since about 2007!

Nice to see some familiar names still helping out here regularly even though some of us don't chime in as often as we should.

Have a great weekend everyone!

warrrior3

Proudtospin, thank you for your suggestion to ween off Arimidex. I was on Prednisone many years ago so do remember the importance of weening. The last 7 pills I will take 1 every other day.

Ruth, like you I don't seem to have SE but do wonder if I realize I did and wasn't aware.

Golden, congrats for finishing also.

proudtospin

these ALs are strong steroids and when we have been on them for 5 years it sure seems normal to take a bit of time for the old body to get used to life without!

but join the world of "we kicked the butt off "bc"

Brutersmom

I don't think that AL is a steroid. Steroid users will us Al to block some of the side effects of steroids. From everything I have read and been told by the MO it would seem OK to just stop them.

proudtospin

well I am not a medical professional and they may not be steroids but I can only give my experience and I felt dang weird and jumpie the first week after ending the aromasin. My MO did tell me just to stop the pil but....up to you

PontiacPeggy

What about the ladies who start and stop it off and on throughout the course of their treatment? I don't recall any of the ladies saying they weaned themselves off it while taking a 3 week break. That being said, when I was taking Medral (a thousand years ago) for my allergies, I definitely weaned myself off it. But it sure did work!

HUGS!

Redheaded1

I have had three breaks since starting. and I had nothing but positive feelings during my "down time". My Mo, for what it is w orth says that it takes a month of being off it for your estrogen to rise back up. So while he wants only 2 weeks break he has let me have one that was 30 days.... They were each and every one FABULOUS. (I went back on it last night after 10 days off).

warrrior3

Hmmm, I will have to think this through. I have 4 weeks left. Anyone ever weaned the self off Arimidex?

PontiacPeggy

I'm curious. Do any of you who have gone your 5 years on Arimidex feel rather bereft now that you are off it? Do you feel naked? Like you aren't doing anything to prevent your BC from returning? Or do you feel that 5 years has done the trick? I don't know - just wondering.

HUGS!

proudtospin

I am comfortable with my going off the med, I was DCIS so really I was one of those that some folks are saying we have been over treated.

It is all personal at this point. What am I doing to prevent it returning? really the sort of things considered complementary treatments. I try to eat healthy, eat tons of veggies, gave up red meat way long ago and reduced how much alcohol I drink,

At this point in my life I feel I have done all the suggested treatment, I did rads, the AL and was lucky to have a really awesomely good BS

I spend lots of time at the gym and feel lucky to have come this far as my stress level has been reduced since retirement

trying to enjoy the life I have.

I do laugh at the investment guy who wants me to hold off on my withdrawals from retirement account so I have enough to cover me living to 105..

PontiacPeggy

Iris, nice to know your investment guy thinks that's how long you'll live! Sounds like you are doing everything you can - good for you! And your attitude is perfect, too.

HUGS!

proudtospin

Peggy. all investment guys want to grab hold of your funds and fight hard to not have you do withdrawals! they all are the same!