Arimidex - Coping with the SE's
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I don't know why Arimidex causes sleep issues in so many women, since it's non-steroidal, unlike Aromasin. I had minor aches and pains, but for the most part did very well on it . I just wish it weren't so *&^%$# hard on our bones.
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Carol65 I was specifically told by my NP to take the Anastrozole in the morning so I wouldn't have sleep issue. I don't have sleep issues. I always make sure I eat a little something before I take it (do that with all meds unless it states otherwise). I started 3.1.2011
I do excercise daily, take extra D3 and Calcium. Still have some stiffness in legs but I can deal with that.
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Hi ladies,
I have a question, and you all are so well-informed. I have been on Anastrazole (generic Arimidex) for 1 year now, and my knees and low back are painful. I can deal with the pain, but what I am wondering is can the drug actually damage my joints? A few days ago, I twisted and sprained my knee. (uh oh-cartilege injury???) I am now on crutches, and it isn't improving as quickly as I'd hoped. Not only that, but now my shoulders and hands hurt, too. That's from the crutches, I guess. What's next? And my head has gone to the unthinkable...could this be mets? To my knees? Please help me calm down.
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Oh, catbill - I noticed the same thing when I fell and hurt my knee last year. It just seem to take FOREVER to heal, I blamed it on age - but I really think the Arimidex is a contributing factor. I take LOTS of glucosamine, tumeric, fish oil - and as I've said many, many time - acupuncture had truly saved my life ( and what little remains of my sanity) - my knees feel better than they have in years and years. ACUPUNCTURE helps reduce inflammation, and works especially well on knees, at least it has for me.
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Catbill, when I fell and broke my foot a little while back, I thought the same thing and got worried. But I am 100% healed - it just took awhile. I honestly think sometimes it's just getting older and menopause. Our bodies just don't heal like when we are young, but because we have had BC, we sometimes immediately think the worst.
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I'm in my 4th year and everyday it is something else to deal with and medicate. Today, my vagina is killing me. Now I wonder if it is cervical cancer. When my heart beat speads up that's another worry. It's at the point of being ridiculous living like this. I am so tired all the time. Don't want to do anything. Barely go into work.
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catbill, I doubt the anastrozole/Arimidex is a direct cause of joint damage. The drug is a very specific inhibitor of the enzyme "aromatase" -- I don't think it has any other pharmacologic activity than that. And, the "aromatase" enzyme converts androgens (testosterone etc.) to estradiol etc.... nothing else, IIRC. (Somebody jump in here if I'm wrong about that.)
So, it's more likely that anastrozole is causing joint pain and maybe affecting the healing process (I don't know about that part) through its ability to inhibit estradiol synthesis. That means it's the low estradiol/estrogen levels that are really causing the problem. Also remember that for many of us, our age is a factor -- our joints, ligaments, and tendons have been taking a beating for many decades. Any little insult, like a sprain or tear, adds to the pain we would be having anyway from osteoarthritis (wear-and-tear arthritis). And, if the low estradiol levels affect the healing process, ... it all adds up. <sigh>
I overdid it yesterday, working outside in the yard. My joints and muscles are not happy!
otter
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Not a medical expert but since it causes carpal tunnel and assorted other joint issues along with osteoporosis, logic tells me it can cause joint damage. Unfortunately there feels like an awful lot is not disclosed. I understand that part of it is that every one is different. Some people have major side effects and some minor or none at all. StillKickin, I stopped the Arimidex because of my blood pressure skyrocketing and my pulse was racing at 120. Taking walks or getting excercise could not happen - I thought I was having a heart attack. I see my cardiologist on 11/17 and want to have her explain to me what all of these drugs will do. My family history is cardiac issues - not cancer. It was bad enough doing everything I could to prevent a heart attack at a young age much less adding to it prevention for cancer. I have the Aromasin but have not started it yet. I have to be mentally prepared and I am not there.
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Cat bill,
I had a lot of knee pain prior to my BC diagnosis. As part of my breast cancer work up my knee pain was discussed. My onc surgeon said BC just didn't metastasize to knees. Now I know there is always the exception to every rule but I hope his words will reassure you. I did have torn meniscus in both knees that had to be repaired but it had nothingg to do with BC nor with arimidex... Just wear and tear. Knees are great now and I walk 3 miles a day a and try to bike 2 miles a day.0 -
Thanks for all the good information, everyone. You folks are terrific. I have to admit some minor knee pain prior to BC and that is not surprising at my age (59). But I know the damage from no estrogen on other parts of my body. I want to heal as quickly as possible since my daily walks with my puppy are just not possible right now. Hubby has taken over, but I miss the relaxation and the exercise.
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Bobbi marie- sounds like my family...spent my life doing my best not to have a heart attack like my dad...got breast cancer instead...took tamoxifen and it caused a heart attack!!! good grief...I had 6 months without any anti BC-cancer meds and just started Arimidex a week ago...have never been a good sleeper and evern worse these past two years....this week, even the zopliclone didn't work..had to up it one day to 15mgs..was groggy, groggy the next day at work because I had taken the last 5mgs at 2am after starting atht eceiling for 3 hours...hoping the arimidex does not make my lack of sleep even worse....but..one week done!.
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I take my Anastrozole just before bed. It has not affected my sleep but then I had problems with sleep anyways even before BC. It hasn't gotten any worse, 2 Advil PM's always work. My SE's are still minimal and not much different than from before going on Anastrozole. Joint pains are the same as before and ruthbru is correct to say keep moving. I hurt more when I just veg-out on the couch for a long time rather than when I'm moving around. Only SE I've noticed is my hair thinning. My DIL is a hair dresser and she said she noticed it also. So she has been making sure I take better care of it for now with the right shampoo/conditioners. She also does a deep conditioner every time she cuts or colors my hair. Seems to have helped and my "shedding" has stopped now. I also take Vit D3 just to make sure my levels stay up. My BP and cholesterol were being treated for many years prior to BC and are actually better now that I have started eating better (no junk food) and lost weight since August rads. One of the SE listed is weight gain, but I've had just the opposite. I really can't complain and hope that we are not scaring any newbies that this drug is all doom and gloom. It does have sisters like me that are doing well and any SE are out weighed by the benefits. I'm not trying to minimize anyone's SE out there just wanted to let the lurkers know that there are women like me that don't have problems with this drug. I really hope everyone with problems on Anastrozole can find a balance with the meds and improve their daily lives. Kitty0
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Thanks Kitty. I realize that most folks who do not have side effects do not post...I only started on breastcancer.org because I was googling hotflashes and tamoxifen in January....but it is good to hear that all is well. Only side effect so far is lots of trips to the bathroom but that is better than the constipation I was warned about so I will take it.Not much has changed in my diet since cancer as I am not a junk food fan...pants are looser than they were so I am hopin gthat is just because of hte exercize I have added to my usual.
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Hello fellow AI users, I know that some of you have had carpal tunnel issues and before I run off to the Dr's I was wondering if you had wrist and below the elbow pain, and hot palms? I have been on Arimidex for 3.5 years and this has been sporadic throughout but now it seems here to stay. Any advice?,
Linda
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Update--I saw my MO today and told him about stopping the arimidex and about going back on Megace-- he said my thinking on this subject wasn't wrong but there was no research to back it up. He said he thought the side effects from the megace wouldn't be worth it. Instead, he put me back on blood tests and exam every 3 months and ordered a PET scan (I was going every 6 months).
What I found interesting in my research is that while arimidex will lower recurrance rates, there is no change in survival rates up to 8 years between using it or not because of the increase in non-cancer deaths, many due to heart disease which a lack of estrogen can contribute to.
So for me, I'm done with anti-hormonal meds for now and keeping my fingers crossed. I've been off arimedex for 2 weeks and my hips are almost back to normal and my blood pressure is back to normal too. (had gone from 110/70 to 140/90 with arimidex).
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VJSL8, that is what I was conflicted on, too. And taking an AI after you have had a hysterectomy/oopherectomy supposedly is even riskier for the heart. I still am very torn about the AI issues.
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Fearless--I've thought about it alot and going off was the right decision FOR ME. I was just having too many side effects from the Arimidex. Quality of life is really important to me vs quantity but I'm single and don't have any children and that made a difference in my decision.
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Re: "…while arimidex will lower recurrence rates, there is no change in survival rates up to 8 years between using it or not because of the increase in non-cancer deaths, many due to heart disease which a lack of estrogen can contribute to."
That "no change in survival rates... between using it or not" is not exactly correct. Apparently, there is no difference ("no change") in survival rates when Arimidex is compared with tamoxifen. There is some suspicion, though no firm evidence, that the lack of survival benefit from Arimidex (when compared to tamoxifen) might be because aromatase inhibitors can make pre-existing heart problems worse. That remains to be proven, though. At this point, it's just a hypothesis.
Arimidex most certainly improves overall survival rates compared to taking no hormonal treatment at all (placebo). Whether or not the absolute benefit from Arimidex is worth the side effects will depend on each person's own statistics. My risk of metastases ("distant recurrence") was 17%, based on my Oncotype DX score.... but that assumed I would be taking tamoxifen or an AI for 5 years. Without the tamoxifen or AI, my risk of mets was doubled (i.e., 34%) -- which, to me, was totally unacceptable. I don't much care if I lose a statistical percentage point of "overall survival" by taking Arimidex instead of tamoxifen -- my risk of venous thrombosis (clots) from tamoxifen is higher than that.
otter
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Otter--I took tamoxifen the first time around and had to stop it because of side effects too, so it isn't an option for me this time. And you are right--I missed the part as compared to taxoxifen.
I looked at my 15 year rate of survival and it appears my rate of recurrance changes from 24% to 34%, and over all it added 7 years to my life expectancy but that would included 4 more years of what I consider hell of staying on arimidex. Unfortunately as individuals we are not statistics, it's all or nothing --so many difference aspects affected my decision.
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Is it not also related to the fact that AI's are for post-menopausal women only..which generally makes this group older than the tammi group overall....and hence, mor likely to have other health issues? Have to say the info here about heart stuff is scaring the crap out of me given my heart attack from tamoxifen in March!
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Otter, my recurrence and mortality score on adjuvantonline was the same with an AI as with no HT, but after an oopherectomy. So we can't really say that it improves survival rates when compared to nothing. Apparently having an oopherectomy skew the numbers, even though the adrenals continue to produce estrogen. Perhaps it's a tiny amount produced, I don't know.....0
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Fearless_One, I guess I need to modify my statement in my previous post to say that I was referring to post-menopausal women on aromatase inhibitors, since AI's are only approved for use in post-menopausal women. And, yes, for those women -- the ones who have already entered menopause naturally and are treated up-front with an AI for 5 years (e.g, the participants in the ATAC trial), we can say the AI improves survival rates when compared to nothing. I don't want anyone reading this thread to misunderstand and think otherwise.
You're talking about pre-menopausal women who've been forced into menopause with chemical ovarian ablation or oophorectomy. Do they benefit from tamoxifen or an AI, in addition to the oophorectomy? I thought the jury was still out on that one.
I also checked Adjuvant!Online, and here's what I found for a hypothetical 40-year-old woman with an ER+ tumor: After surgery (mastectomy or lumpectomy/rads), 1) oophorectomy would reduce the risk of recurrence by an additional 6.6%; 2) oophorectomy plus 5 years of tamoxifen or another hormonal therapy (i.e., AI) would reduce the risk of recurrence by 6.6% (the same as oophorectomy alone); 3) 5 years of an AI would reduce the recurrence risk by 9.4%, but this assumes the woman was already in menopause. AI's just work better.
I also read the "Help" section of Adjuvant!Online, and it said this:
"… Adjuvant! estimates that ovarian ablation is an effective adjuvant option in premenopausal estrogen receptor positive patients, and that ovarian ablation has approximately the same effectiveness as tamoxifen. … Ovarian ablation in combination with tamoxifen or an aromatase inhibitor should only be considered in women who are in a premenopausal state."
And:
"Whether adding other hormonal therapies to ovarian ablation results in increased effectiveness is an area of controversy, uncertainty, and clinical trial research (the International SOFT and TEXT trials). Adjuvant projects that ovarian ablation combined with other hormonal therapy has approximately the same effectiveness as tamoxifen, although there are reasonable arguments that this is too conservative a view. Clinical trial participation is encouraged."
The bottom line is that you are in a special situation in which there is not enough data to make good predictions about effectiveness. Once a pre-menopausal woman has had an oophorectomy, it's possible that taking an AI or tamoxifen may not be of additional benefit. That is not the same thing as whether a woman already in menopause naturally will benefit from taking an AI. I don't know why those situations are different, physiologically, but it appears they are. Or, maybe nobody knows.
I suspect you're right about the sudden effects of the oophorectomy, versus the fairly gradual decrease in ovarian function leading up to menopause. Maybe those other tissues (adrenal glands, adipose tissue) don't start making estrogen in women until some time after their ovaries have stopped functioning or are gone. I guess we'll find out in the next few years, eh?
otter
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Thanks, Otter....I always enjoy your posts and they are always very thought-provoking... Yes, even my onc said "no one really knows" when I asked her about an AI benefit after oopherectomy. It's just very confusing to me physiologically, since menopause should be menopause, no matter how we get there. But it looks like that isn't the case.
I look forward to more research done on women with oopherectomies and whether or not they would benefit from AI's, given their serious side effects.
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"Ovarian ablation in combination with tamoxifen or an aromatase inhibitor should only be considered in women who are in a premenopausal state."
This part makes me especially nervous, since I had ooph and am post-menopausal and on AI. Do they put that disclaimer because it might be dangerous? Or because it just might not be effective?
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Fearless, I look forward to the research, too... but it sux when we're the guinea pigs, doesn't it?
As for that warning about ovarian ablation + tamox (or an AI) being "considered" only for women who are pre-menopausal, I think they're just stating the obvious. An oophorectomy would be of no use, hormonally speaking, in a woman who was already clearly menopausal. Taking out her ovaries would not cause her estrogen levels to drop any farther (or, at least it shouldn't). Therefore, obviously, "ovarian ablation in combination with tamoxifen or an AI should only be considered in women who are in a pre-menopausal state." Duh, yes?
... unless, of course, the oophorectomy is being done to decrease the risk of ovarian cancer, in a post-menopausal woman who is at high risk because of a BRCA1 or BRCA2 mutation.
As for our regularly scheduled programming... I do think all our exercise advocates are correct -- I seem to do better on those days when I've been getting an hour or more of moving-around-type exercise. We've been doing light yard work since this time last week, and my aches and pains have lessened (except for the "good" aches from tired muscles).
otter
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Well, time for me to join this thread. After three years on tamoxifen, I will be taking my first Arimidex (or generic equivalent thereof) tonight. Or maybe tomorrow morning . . . I guess I will have to experiment with timing all over again. (I always took tamoxifen at night and it didn't seem to affect my sleep at all.)
On the disease free vs. overall survival issue: I raised this with the onc when he gave me the big "we really want you to switch over to an AI for the next two years" lecture. His take was not that increased other-cause mortality negated the benefits of AIs against BC, but rather that 10 years follow-up wasn't long enough to really capture increased overall survival. That seems plausible to me, as many women whose disease recurs will still be alive at the 10-year mark; however, I haven't read up enough to feel I really understand the research. Otter, any thoughts?
Mainly, I just wanted to thank everyone here for the wealth of information and advice (all 112 pages worth! -- I won't pretend to have read them all, so please forgive me if I ask redundant questions) and warn you that I will be drawing shamelessly on your experience.
Linda
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Good luck, Linda...many women do great on AI's. Make sure you get bone density tests yearly.
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Otter and Fearless, I might not be understanding your conversation correctly so ignore me if I am offering info that isn't relevant.
I've had a total hysterectomy - several years ago. I had both my Med Onc that I chose and my second opinion doctor (that did not talk to each other) give me exactly the same info. Estrogen in the body comes from more than the female organs - estrogen comes from the adrenal gland (that sits on the kidneys) and body fat. The AIs stop the estrogen from producing in the adrenal gland. Only losing the fat will stop it from body fat. Tamoxifen is still an option So whether you still have your ovaries or not, you are still generating estrogen from those 2 sources. Therefore, AIs are still effective. And they both have Tamoxifen as an option for me although it won't be as effective. I haven't spent a lot of time asking questions about Tamoxifen - I was so confident one of the AIs would work.....lesson learned. I work with a woman that is on Tamoxifen as she has no choice - she has osteoporosis and it is either Tamoxifen or nothing. She did not want to take that chance and is dealing ok with it...other than bone pain and hot flashes.
I may not be remembering this correctly but I'm pretty sure there was an article on this site that discussed the benefits of switching from Tamoxifen to AIs rather than a full 5 years or so of one.
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So here is a question..does arimidex cause low blood pressure? With my meds for heart and now two weeks on arimidex, I am suddenly EXHAUSTED!!! Went to pump class anyhow today and thought I should take my blood pressure...even during he heart attack it was 112/70...today it was 109/59...no wonder I have been feeling faint and exhausted! good grief....anyone else have that happen when they first started on it?
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BobbieMarie, I don't agree or disagree. We don't really know how effective AI's are in women with oophs. Even my onc admits this. Perhaps the adrenals produce very little estrogen. According to the medical math sites (adjuvantonline and cancer math), there is no benefit in my particular situation for taking any hormone suppression therapy after an ooph.
In the ATAC trial no difference was noted among which post-menopausual women had oophs and which had it naturally. There need to be more studies on this, since these are serious drugs. I would really hate to take it to find I have no benefit - but I would hate to not take it and get cancer again.
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