Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Jul 10, 2012 06:46AM - edited Nov 15, 2017 01:07PM by Moderators
I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.
I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.
Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.
Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More
Posts 15991 - 16020 (17,514 total)
Mar 1, 2019 06:50PM HikingLady wrote:
I suggest just starting it. Just stop taking it and reassess, if it really affects enjoying your trip. Lots of people do just fine, and their side effects are very minimal.
I had a few things I noticed right away, but nothing that would have ruined going on a trip. Some stiffness. But, I already had some, and it's not a ton worse. I felt a little sleepy in the daytime for a few days, but who knows if that's why, and it definitely went away after a week or so. My sleep is a little disrupted, but it has been for years, so I don't think it's any different on Anastrozole. My thumbs sometimes get a little sore, and my fingers sometimes fall asleep. Slightly annoying, but not terrible.
For me, the anticipation and dread were way worse than the reality.
Mar 1, 2019 07:40PM Taco1946 wrote:
I would wait, especially because you are going to be in a place where it may be hard to get in touch with MO.
My primary has watched me for years as my dad was insalin dependent diabetic in his later years. He said taking metformin was my choice at this point. My numbers were a little high but not bad. I decided to take it for two reasons - there is some evidence that it helps with the joint pain and based on my husband's experience, I hoped it would help with weight control. Both have proven to be true for me. I admit that I haven't been as diet conscious as many of you although I am a few pounds lighter than when I left WW four years ago.
I agree that many of us post here because of complications but there is a thread for those doing well on AI's. Check it out. The only SE I can complain about is thinning hair (and my stylist reminds we that my mother was practically bald when she died so AI's may just be excellerating the inevitable.) My goal is just to be known as "the lady with the hat."
Sorry about the spelling errors - my spell check isn't helping me tonight.
Mar 1, 2019 09:17PM PhoenixCruiser wrote:
I started Anastrozole on October 26th. To date the SEs include, achy joints, especially when I first start moving and weight gain. I decided that I would start walking in 2019 to see if that helped. In January my steps totaled 152,000, last month over 200,000. Walking has helped so much! My joints stil hurt but once I get moving everything is fine - and I lost 6 pounds in those 2 months.
Not sure if I will last the 10 years but for now I'm good.
Good luck to all of us!
Mar 2, 2019 12:04AM CindyNY wrote:
WorrythePooh - my MO had me start the AI about 1.5 months out from my last rad. She wanted my skin all healed up before I started anything, and she had me start by taking a pill every other day for 6 weeks. So my 2 cents is to wait until you're back from vacation. Best wishes to you!
I post on both forums - here & doing well. Because I have side effects I look for others who have the same & might have a trick up their sleeve to share with me. But truly I don't have it as bad as some, but maybe worse than others. I think early on when I started taking it was much worse than it is now. A full body, mind & soul adjustment to blocking estrogen. I'll get through it, hoping all of us can.
Mar 2, 2019 07:02AM MACTAZ wrote:
I can’t see to find any other thread, what is the name of the doing well topic
Mar 2, 2019 08:00AM Janett2014 wrote:
Here’s the thread you’re asking about.
Mar 2, 2019 11:36AM MACTAZ wrote:
Mar 2, 2019 07:38PM Taco1946 wrote:
Good for you, Phoenix. I've been doing less the last few months because of some gastric junk and the weather but I have found that 7500 steps (or 50,000 a week) is a reasonable goal for me. Even not meeting those goals recently, I am down a few pounds which I hope will continue as spring really arrives. I know I feel better when I exercise.
Mar 3, 2019 09:42AM GrandmaV wrote:
Mar 3, 2019 06:57PM WorryThePooh wrote:
Thanks so much for the advice CindyNY, Taco1946 and Hikinglady, I'm so glad this forum exists as it really helps to ask people who are going through or gone through the same. I have decided to wait a few weeks to start, so I will feel less worried in the lead up to going overseas. :)
Mar 4, 2019 09:52AM FaceForward wrote:
I'm taking my first Anastrozole pill today. Not happy about it but I'm going to try to surround myself with a positive force field to keep the worst of the SE's at bay. LOL!
Question: Leading up to this day, I've seen references throughout the different forums on taking the pills with/without food. Unfortunatey, I don't remember all of what I saw at the time and as I said, the info was spread throughout the forums. I would appreciate any input on what works best for you. Thanks in advance.
Mar 4, 2019 10:00AM ajbclan wrote:
Faceforward- I freaked out the first day too and the ladies here calmed me down lol. It's a mixed bag like anything- some folks take with food, others like myself can take it on an empty stomach. I think the anxiety got to me, but once I realized what I was doing to myself, the SE's weren't that bad. I've been on it for about 3 mos now. Wishing you the best....
Mar 4, 2019 11:37AM - edited Mar 4, 2019 11:38AM by egregious
Way to go on starting your Anastrozole today! Re food/no food, I've been taking it in the morning with breakfast. Stomach issues in the first few days (about 3 hours after taking the pill) were helped by eating saltines. That all went away.
The first week or so was headachy and flu-y but gradually I felt better. Now one month in, the remaining issue is fatigue, and I think that is slowly lifting as well. The medical team said things would improve over a 3-4 month period and to give it the old college try.
I am very not interested in going through all this cancer stuff again, so anything I can do to prevent recurrence is high on the list.
Good luck and keep us posted!
Mar 4, 2019 12:41PM FaceForward wrote:
Thanks for the info re: food w/pills. I'm allergic to a lot of things so I always worry when I take something new. I decided to take my pill this morning with food. I made some toast out of my favorite nut & grain bread and spread a little natural peanut butter on it. So far, so good and it's been long enough that I think I can rule out any sudden allergic reactions. Now I'll just stick to the plan and see what develops.
My MO has been pushing me to start my AI since before radiation. I pushed back on that because I didn't want to deal with both things at once. I've started seeing a bone specialist due to osteoarthritis in my DXA scan. From the beginning, he was anxious for me to get started on a bisphosphonate. I declined to do that right away also but we'll choose one of those and I'll get started on it in the next couple of weeks. I'm committed to doing this but I have to do it in a logical way that feels right to me. Starting multiple drugs at once doesn't fit that requirement. If I did end up having serious side effects and needed to switch a med, how would I know which one was the culprit? I really like and trust my doctors but they are doctors afterall and it's likely that everything they see will tend to need treatment sooner rather than later. I told both docs that, "When you're a hammer, everything you meet is a nail". :) They both laughed and they totally understood that sentiment. I appreciate that they are very considerate & supportive of my worries and my choices. Can't imagine going thru this with a medical professional that I didn't like or trust.
Mar 4, 2019 12:54PM MACTAZ wrote:FaceForward, just wanted you to know I started my anastrozole 8 days ago and I have been on alendronate for my osteoporosis for about 10 months now. I was scared when I started on the bisphosphonate but didn’t have a big issue. I feel a little wonky the next day, but nothing that keeps me down, I take it once a week. I was also very nervous about the anastrozole but I’m haven’t noticed anything. I’m achy but because I have arthritis everywhere isn’t any different than normal. If anything I feel better because I increased my walking from 3 to 5 miles and I think that has really helped. I also lost 15 lbs during chemo and have kept it off, which I think helps also. I hope all goes well for you.
Mar 11, 2019 07:18PM WorryThePooh wrote:
I ended up caving and starting the pills on the 6th, mainly because a friend of mine kept telling me to take them, as she many years ago stopped taking the pills due to side effects and now has a grim prognosis. Although it's not definitive that one led to the other, she doesn't want me to risk the same happening. I have had some aches and pains in my hips and a lot in my neck, not sure if that's my back and neck playing up, or it's caused by the pills! Worst thing is I just realised that I accidentally took two pills yesterday! Rather worried now whether I have caused myself some harm. I am going to mark each day on the blister packs to make sure it doesn't happen again.
Mar 12, 2019 12:50AM CindyNY wrote:
WorrythePooh- I've taken two within 10 minutes of each other. Tried calling at 1 AM for help, no one is available. Called pharmacy the next day, told them it obviously didn't kill me because I was alive to call. Pharmacist said to skip the next dose. Call your pharmacy tomorrow. Best of luck to you!
Mar 12, 2019 11:21AM Snickersmom wrote:
FaceForward - I take my Anastrozole in the morning with various other pills I have to take (Vitamins, pills for other issues, etc.) and I have never really had a problem. I will say that once in a while, my stomach is upset if I don't eat within 30 minutes or so, but I don't know if it's the Anastrozole or something else that bothers me. I have been on it for almost 2 years.
Mar 13, 2019 08:45PM WorryThePooh wrote:
Thanks CindyNY! Unfortunately I only realised I had taken two the day before, after I already took my morning dose the next day! I did notice a lot more hot flushes that day so I am putting it down to that.
To make sure I don't do it again, I have taken all the blister packs out and written the days of the week with a permanent marker on the foil behind each tablet.
I have been feeling a bit depressed since I started taking the pills, so I am wondering if that is a common, or possible side effect? The other thing I have noticed since starting is more pain in the affected breast.
FaceForward, re your statement "Can't imagine going thru this with a medical professional that I didn't like or trust.", I have to say unfortunately I can now imagine it, as one of my doctors I find not very understanding and rather judgemental of any concerns I express, so I took to deciding not to ask about things that worry me. Which is why I am so grateful of this forum. :)
Mar 13, 2019 09:49PM Stellawt57 wrote:
Worry & FaceForward, I totally understand where you're coming from. I have been pawned off to my PS CNP who I don’t like or trust & to my MO CNP who I’ve never met, now they are my care providers! I also called to schedule my 1 year appointment with my BS for October as my schedule is tight and was told I couldn’t because my BS had to write a script for the appointment when I see her at my 6 month appointment which is in a month, what the he**. Then I’m told I’ll probably see her CNP for my 1 1/2 yr. appointment. I feel like a chess piece in the game with the DRs checking to see who can kick me the farthest of the board! They are supposed to be here for us, but I’m not sensing it. Then they wonder why we are anxious, stressed, fatigued, and depressed. How the he** are we to have QOL and find the new normal so we can move on from this disease when they are a contributing factor!
Anyway back to the original topic, I take anastrozole first thing in the morning with my other meds. Have been taking it for 5 months. My main issues are mood swings and anxiety with my hair starting to thin out. I started taking magnesium at night so I’ll se how that goes in the next couple of weeks.
Thanks for letting me vent!
Mar 14, 2019 12:54PM - edited Mar 14, 2019 01:02PM by ctmbsikia
I take anastrozole at night with my statin after dinner. Vitamins in the morning. Right now only taking glucosamine and Vit C. Advil as needed. I really don't want to add to this list. SEs are minimal to me, I deal with them somedays better than others. Walking/exercise most definitely helps me with the stiffness. I do have hot flashes/sweats and my hair has thinned.
It's interesting reading all these topics, what everyone has been thru (the good, the bad, and the ugly!) and keeping up with the most recent studies and treatments, and reading the different supplements and other OTCs have helped some of you. Claritin for example.
The other day I was reading about bones and the myths of osteoporosis. The bone density test-which measures "density" not strength. I'd like to know if a patient has good muscle around their porous bones wouldn't that lower the risk of fracture? Also the test parameters are questionable. One could even get two different scores from different machine. I had a dexa right before diagnosis which showed osteoporosis in my hip and osteopenia in my spine. Last MO appt -actually had the NP who was OK-asked me to see a dentist first and then come back for the Prolia shot. My insurance company meanwhile denied the claim. So, since I'm doing some dental work now, I am not thinking about this until my next dexa which will be in December. That will also be a year and a 1/2 into taking this AI as well.
In my case so far this is what I got: re: bone drugs
1) It's not an approved treatment of osteoporosis as stated on my claim, even though the diagnosis from the MO on the claim was regarding the BC. I have a co-worker with severe osteo-and has had fractures in her spine. She received instant approval. It's apparently covered once you fracture.
2) It's not approved as a preventative for bone mets apparently either, unless you are metastatic. I only had a micro met in 1 SN.
It's all very confusing. I also keep a spreadsheet with some notes that I can refer back to. Some as simple as how long to expect a return call to make an appt. like more than 24 hrs, 48 hrs, with the all the Drs.. I freak over small details more than I should. My notes will help me remain calmer while waiting when peeps don't answer the phone and you can't schedule through the network portal. Gosh, sorry so long and didn't mean to veer off topic too much.
Mar 14, 2019 09:40PM Taco1946 wrote:
My very "bitchy" attitude got much better after a switch from anastrozole to letrozole. Everything set me off. Hair is definitely thinning more though. I'm just becoming the "hat lady."
I feel as if I've been more depressed than usual but I think a lot of it is that we have had such crumby weather. Arizona needs the rain and snow but we've had far too many rainy overcast days to suit me. I will not do well when I have to return to New England where my daughter is. Not asking for sympathy for this - I know it's been awful all over - but I do think it's kept me down this winter.
I always see my MO (every 6 months now) but have been seeing my BS's PA since my first exam after BS put the incision in for the brachytherapy. But I think she's great and both she and MO's PA return my calls promptly. BS's PA had a note on my chart within 6 hours of when I had my last mammogram.
I do hope those of you who feel dismissed can find another provider. Cancer is hard enough without having to struggle to get questions answered.
Mar 14, 2019 10:43PM NoWhyToIt wrote:
Here is my regimen for what it's worth (I am on year 4 after 1 year tamoxifen):
Take at night
Take Vitamin D, Glucosamine, Calcium, Aspirin
I don't think anyone should be terribly worried about SEs short term. They might be annoying but are manageable. The real issue is long term hormone depletion. Bones, joints, mood, aging etc. That is harder to deal with and is up and down, with no easy answer. The Vitamins and bisphosphonates help. Some find switching among AIs helpful but if you have one that works for cancer prevention it may be worth considering that another might not work as well. You may be lucky and your body might really just adapt to the medication well. Everyone is different.
Mar 14, 2019 10:50PM BadLuck wrote:
BlueGirlRed - I believe breast cancer treatments have to be the worst hell to endure. We're stuck between a rock & a hard place. Dammed if we do & dammed if we don't. I certainly don't want cancer coming back so will take these AIs as a preventative. The wicked side effects of damaging my bones by giving me osteo, giving me a higher risk for getting diabetes, making me an emotional wreck, my hair thinning & falling out, etc. But I refuse to take the dangerous osteoporosis drugs & diabetes drugs with all their wicked side effects. I'm going to fight like hell to combat these awful side effects by recently joining a diabetes prevention class & starting bone resistant & strengthening exercises.
Mar 15, 2019 06:20AM MACTAZ wrote:
Badluck, I have been on fosomax for 9 months with little to no SE. Most treatments we endure can have devastating effect to bone health, I was already in full blown osteoporosis before DX and therefore was happy I had already started treatment with fosomax. I will see if it helped in a couple of months when I get my next DEXA scan, I’m hoping to have at least held the line or possibly increased bone. I think everyone is different, for me it is worth it
Mar 15, 2019 06:36AM Ingerp wrote:
ctmb--I also am wary of taking supplements. Of course with the AI Vitamin D and Calcium were recommended. After some research I decided to take a D3 supplement but not the Calcium (although I am trying to increase that through diet). What I was reading was that while Calcium supplements can improve bone density, they don't prevent bone fractures. And I think they can be overdone with potential heart problems. I remain unconvinced, although I haven't had a bone scan since last spring. And I've been reading about possible negative impacts on BC from dairy. I guess I remain a work in progress. . .