arimidex - delayed side effects

I find side effects are cumulative as your body is a longer time without the benefit of oestrogen.....makes sense to me, the only one I had severe earlier effects from was Arimidex, the others took months to really kick i

I'm just past my 6 month mark on Arimidex. I started off with a few night sweats and insomnia. Just recently I've noticed an increase in aches/joint pain, especially in my back, hips, knees, and feet. Interestingly, I also had my ovaries removed 2 1/2 months ago too. I just turned 44, and my MO warned me that his younger patients seem to have more trouble with the AI, maybe because of the sudden loss of estrogen. I'm hoping my body needs time to adjust, so hoping this doesn't continue to get worse as time goes on.

PB

I believe the effects are cumulative. I was off Arimidex while I went through chemo and things were fine (except for chemo crap). Then within 4 months of returning to Arimidex I felt like a crippled old lady. I sat with a heating pad on my hands, feet and knees. My BP skyrocketed to the point I am on 3 BP meds. Insomnia caused me to find sleep separate for my husband. Then I was switched to Aromasin (examestane). The joint pain eased off and the insomnia is controlled with benedryl. But whoa…I gained about 10 pound per month until I gained all the weight I have ever lost. It was like my metabolism reset my fat cells to the highest level ever. So I have once again enlarged my wardrobe size and tried to accept that this is the way it is going to be. I have accepted that this is the way it is. But it truly infuriates me when a healthcare professional comments on eating healthy and exercising. i swear, it is a good thing I do not carry a weapon.

Hello BCO Folks! I haven't posted anything in a while. Not unlike many of you, I have also suffered moodiness (HA, that's putting it mildly!! lol) and various other side effects (25 pounds of weight gain, vaginal dryness, loss of sexual desire/separate bed from my husband, loss of energy/can't play with my kids anymore, physical pain head to toe, bad, bad hair growing in, hate to look in the mirror, etc). I haven't written out all of my cancer information (staging, surgeries, treatments, etc.) because honestly, I take offense to everything these days and preemptively put safeguards in place....for the benefit of everyone else!! Yep, I am THAT cranky. If I say my tumor was "this big"....someone always has a bigger, sadder one to tell me about. If I say I am "this age or that age" someone always tells me they are so much worse off - older or younger. If I say I am having a hard time, NON CANCER FOLKS tell me that I should just be grateful to be alive.....and so on. I cannot trust what comes out of my mouth or even what I might post on this site. I was NEVER this person. I was never this unhappy. I am now. I have been struggling since January 2015....and it's now March 2016!!! I can breath. I can use a toilette. I can eat. I can watch TV.....and watch everyone else around me, have a life. Mine feels as though it is "on hold". There were TWO SOLID WEEKS of joy in my life since diagnosis (August 2014)....and that was the 2 weeks following my total hysterectomy (my choice) on January 25th, 2016. I had a "drug holiday" for 14 days (other than Herceptin) and it was like coming out of a dark cave. I looked around and smiled at my husband, my children, my life!!! I was soooooo happy!!! Not for any particular reason that I can pinpoint.....all of my senses felt.....better, for lack of a clearer descriptor. Things felt more normal. I liked the smell of things, the feel of things, the look of things, the sound of things - I liked being me! I lost 8 pounds without even trying (yes, I have dieted and exercised - never lost a pound)!! Then, I started my A.I. (previously was on Tamoxifen for 1 year - made me totally crazy as well). Within 2 days.....I started to "age"....aches, pains, insomnia again, weight gain again, crying all the time.....crazy person! I have just sort of accepted the fact that this is the new me. I will keep trying my best, but honestly, if this is how I am going to feel for the rest of my life????? Gotta admit, I tell my husband that sometimes, I wish I never did ANY of this....not the surgeries, not the chemo, not the radiation, not the hormonal stuff....none of it! I had no idea what i was in for. My biggest fear is that no one will remember who I was BEFORE CANCER. My children were so young when we started this journey that I am afraid this is ALL that they will remember....and my poor husband - we are like brother and sister now. If anyone else out there feels the same way or has found some "tips"....send me a PM and we can chat. I am running out of ideas....and feeling pretty low. And I do not find that it helps me to continue whining in writing or changing my diet or taking mood altering pills or exercising.....I just feel tired of all of this. I am tired. This post is a last ditch effort to identify some sort of "light" at the end of this tunnel. Is there any? Does this eventually go away at some point? I feel like an alien.....not quite fitting in anywhere. Lost. And I know that it is mainly due to the drugs. But I am full of fear and anxiety on top of everything else (also something new for me "fear" of anything!) and I don't want to stop the drugs if they will help my children to keep their momma!! But what if mommy is a bit of a monster sometimes? Which is worse for them? ARGH!!! That was the additional bonus of GUILT that I feel on top of everything-else's-everything-else!! Prior to cancer, I didn't even take an aspirin....I do not tolerate drugs well/super duper sensitive to every one of them. This has been absolute hell for me.....and I really don't know what else I can do for myself. If I have offended any of you, please know that it was NOT my intention at all!!! Please don't give me heck. (yes, I have been scolded by my family members for not being strong enough to get through this....I have lost a close relationship with my mother, sister and best friend due to my angry and hostile nature on these drugs.....they won't speak to me anymore and suggest that until I get my moods under control, they don't want to be around me or any member of my family, including my children). I have lost it folks!!!! I have my good days.....but in a world obsessed with statistics, let's just say that 90% of the time, I am sad!

PerAngusta - This is EXACTLY how I feel on Arimidex - you are not alone

I wish the media would report more on this side of BC than the "I have a new lease on life" BS

((hugs))

I went to see my MO today. After 8 weeks on Arimidex I am done. I can barely walk with severe back, hip and especially thigh pain....all bone pain. That doesn't count all the other miscellaneous joint/bone pain.

There was no discussion, they readily agreed. My only regret is that I didn't stop sooner. Kept hoping "this too shall pass" but it just kept getting worse. He is doing a bone scan just to be safe and rule out bone mets but my bet is this is all the medication. He says it'll take about 3 weeks for these symptoms to go away....sigh. Then he started talking about seeing me back in a month and to discuss alternate meds....I don't think I am going to take anything additional.

PerAngusta....I am a trained medical professional. Sometimes knowledge isn't a good thing.

Hello Ladies, I'm pretty new here. Started taking anastrozole 2/12, so almost 6 weeks now. Right after surgery (lumpectomy plus re-exision on the right) 1/7 and 1/14, I developed pain in my right arm very much like when earlier shoulder problems flared up. Asked the surgeon if it could be lymphedema, she said was probably the old shoulder problems due to arm positioning during the surgeries. About 2 weeks ago, started having pain in my neck - like cramps, and the arm seems worse. I'm reading a lot of comments about back and shoulder pain, but not neck. Any of that out there? I have an appointment with my primary doc next week, so will discuss this with her. If it continues, will most surely contact my MO.

Neither heat nor cold seem to help. I've tried IcyHot and essential oils for muscle pain, neither of which help much either.

Thanks!

Hi MissV...I hear you on waiting for the lightening to strike lol. I was the same way!!! Unless you have an allergic reaction you will probably not feel too different for a couple of weeks. The side effects seem to come on over time and some people don't ever get any that are too bothersome. For me I kept an informal journal of how I was feeling, any aches and pains, side effects etc. It was kind of goofy things at first....I called them my "miscellaneous" pains....a twinge here and there, an achy joint that literally lasted for about 10 minutes, a knee that ached for just a day. I did notice the brain fog and inability to concentrate. Got sinusitis that lasted 6 weeks...hmmmm started thinking about that one. Everyone is different. So keep track of how you're feeling so you have a reference point for when something started and call your MO if you get a side effect that is particularly bothersome or intolerable. Unfortunately I did have a severe reaction and developed awful bone pain in my back hip and thigh and I ended up stopping the Arimidex after 8 weeks because the pain was intolerable and I could barely walk let alone conduct daily business. My MO's NP said she hasn't seen a reaction like this in a long time which would lead me to believe that it is not common to get such a severe bone pain. So replace your fear with awareness, track how you're feeling and contact your MO if you notice something worrisome or a side effect that lingers and is especially bothersome/intolerable.

Per Angusta, I was crying as I read your post because that's exactly how I feel as well! I recently stopped Tamoxifen for three weeks because of severe joint pain. Within 2 days I noticed that my vaginal dryness was at least 50% better; within a week or two my eyes looked brighter, the skin on my face wasn't sagging as much around the jowls, and I had more energy. After two weeks off the drug, a good friend of mine asked if I had gotten Botox or dermabrasion because I looked so young! I immediately started crying because I had seen the same thing when I looked in the mirror. I hadn't even realized the extent of the aging until I stopped the Tamox. And I was crying because I knew this was only a short reprieve - I've been switched to an AI and I'm sure the SEs are similar if not worse.

Like you, when I mention these types of things to non-cancer people, they usually say that I would have been going through menopause soon anyway, the drug just sped it up a little. But the drug is like a light switch - we don't get to ease into menopause like everyone else, gradually getting used to a decrease in estrogen over many years. We are dropped into the no-estrogen zone and it throws you for a loop. Being 52, I feel like the Tamox is robbing me of those last few good years where I still feel young and look young. Thank you for saying what so many of us are feeling!

MomtoIrishQ… Charleston, SC Joined: Jul 2014 Posts: 126

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12 minutes ago MomtoIrishQuads wrote:

Hello all,

I have been taking Armidex for 1.5 years (after Stage 1/2 BC with a lumpectomy) - and in the past 6 months I've had lots of issues that I didn't even link to Armidex (duh!). Insomnia (I can usually only get to sleep around 3am or later), weight gain, hot flashes......things that I can somewhat deal with but the thing that I can't deal with is the extreme fatique (e.g. to the point that it's hard to get out of bed). And the joint and bone pain has gotten pretty bad (sometimes it's hard for me to walk) and then just the other day, I had blood tests and my liver enzymes were elevated. My oncologist scheduled an ultrasound on Tuesday (presumably to figure out if it's the result of a tumor, or fatty liver - although she didn't say why - I have ascertained this from researching it myself). I also have a lot of autoimmune issues (Hashis, psoriasis, vitilago) - so it could also be autoimmune hepatitis (again - figured this out by researching on my own). At the least my oncologist told me that it's no wonder that I'm tired all the time with the elevated liver enzymes.

Anyway - I've read that tamoxifen can cause liver issues - but just wondering if Armidex can, too??? I feel like crap and was thinking it was having 4 teenagers - and have been trying to make my way through it - but I'm not sure that I can. My two bouts of BC were both strongly estrogen related. Any thoughts? I just want my life back again.....

So sorry for all of you experiencing some really bad SE from anti hormone treatment. Thankfully not all women do. However it is true that only 50 percent of women complete the recommended 5 years due to SE. IMO that's just not good enough. I feel its really important that those of us that do experience bad SE speak up! Hopefully then some research will go into better treatment options. Im going to stick my neck out and say that if BC was a male dominate disease things might be different. Im happy for anyone who does well on these drugs but unfortunately there are just not enough of us. Good luck to all.....

Hi

I have only been on Arimidex for about 3 weeks so not such a great resource but I do know that as they work decreasing estrogen over time the decrease causes increased side effects,

Good news is the side effects are a sign that we are kicking cancer. With each hot flash I get mad at cancer and think, “take that, and that!” As if I am beating it up.

Then I believe (again not much experience). Over time when we hit the estrogen depletion our bodies should settle down.

I believe a diet rich in greens and water water water legumes whole grains does help did I say water?

Exercise is so important to combat fatigue and with strengthening our muscles that support our joints and bones the pain should be lessened.

Rest Rest Rest even if we cannot sleep due to insomnia.

I was on Premarin since my complete hysterectomy in 2010 and in May came my diagnosis and abrupt halt of hormone replacement therapy.

I am having hot flashes, insomnia which is not new for me, nausea and was very much alone before cancer. Now I am blessed to have my sister just a few hours away and she has been a blessing. Trying to be positive but again only on this drug for three weeks.

I am sorry to hear so many are suffering so badly. My prayers are with you. To the women that are concerned about their mood and the irritability resulting in alienating family and friends I can relate. But you have a sweet spirit and are a wonderful mother to worry about the effect on your kids. Hormone changes are to blame not you so please be nice to yourself. I want you to look in the mirror every morning and greet yourself with “Good morning (name). You are wonderful deserving of compassion and understanding. I love you and am good”!

God Bless Everyone on this site for sharing.

Hi y'all-- I've been on Arimidex for four years-- only one more year to go! At first, I had hot flashes CONSTANTLY. I didn't have hot flashes when I went through menopause 20-ish years ago for real. They've diminished, and what little is left of that SE I'm kind of used to.

I think I posted here about shoulder pain a couple of years ago. It eventually went away. But now, for the past six months or so, I have pain in my right upper arm. Sometimes it's the shoulder, sometimes the bicep, sometimes the tricep, sometimes from the elbow on up. At first I thought it was computer mouse arm, as I spend a lot of time on the computer. What it sometimes reminds me of is the soreness in your arm muscle that you get after a shot. The pain is not as bad now as it was in the beginning-- at first it would ache horribly while I was lying in bed trying to sleep. (As others have mentioned, my sleep is CRAP.) I'm not sure if the pain is getting less or I'm getting used to it.

The last time I went to see the surgeon for my annual followup a couple of months ago, he suggested the pain might be an Arimidex side effect. I took myself off of it for three weeks and didn't notice any difference, but maybe that wasn't long enough. I dunno. But I can't stop thinking about it. And worrying. I can't decide whether to call the surgeon or my oncologist. They're at two different institutions. The surgeon might be more willing to do a bone scan. Maybe I'll call both and see who is more receptive to following up on this. I'm just going around in circles in my head.

The pain itself isn't all that bad, and I don't really care what the pain IS. I just want to know what it ISN'T. If it's a side effect, fine, I can live with that for another year. But what if it's bone mets? Frankly, in my frame of mind, even if I have a bunch of tests and then tell me it isn't cancer, I won't feel totally reassured. Sooner or later, something is going to get me, right?

Anyhoo, I know you ladies understand what it is to be in this state of turmoil. Just wanted to share. Thanks for listenign.