Nov 9, 2019 09:02PM MACTAZ wrote:
Chris203, no worries we all have those days and sometimes you just need to get it out.
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 16771 - 16800 (16,928 total)
Nov 9, 2019 09:02PM MACTAZ wrote:
Chris203, no worries we all have those days and sometimes you just need to get it out.
Nov 9, 2019 09:29PM Jinx27 wrote:
My insomnia and anxiety are annoying. I might try CBD. Any suggestions?
Nov 10, 2019 06:53AM MACTAZ wrote:
jinx27, when are you taking your Arimidex? I have always had sleep issues and they compounded after starting my little pill. I take it first thing in the morning and then at night take 5 mg of melatonin. I don’t watch tv and try but do read my kindle in the dark. Within 30 minutes or less I’m asleep. I wake up during the night but usually get right back to sleep again. Anxiety I can’t help with, I call it the blues. My OC told me if my blues do come back, he would prefer I talk with a psychologist first before trying any meds. They would work with you to try an deal with your anxiety mentally versus medically.
Hope things get better
Nov 17, 2019 06:58PM Pepsi1975 wrote:
I am taking anastrozole, for about 6 weeks now. My eyelids and above and below my eyes have become extremely swollen and my skin burned then peeling. It takes 5-6 days to go away. The eyes and skin itch. Has anyone experienced this and if so what was the solution?
Nov 17, 2019 07:12PM HikingLady wrote:
Pepsi1975 What does your MO or a dermatologist say? I wonder if it's possibly not related to taking an AI? I've never heard, on these posts, of an AI causing symptoms quite like what you're describing. Sounds very difficult, and I'm so sorry!
If you feel comfortable sharing Public settings for My Profile, for DX and TX, we can see where you are in treatment; sometimes that makes conversations a bit more tailored to issues that you are dealing with.
Nov 18, 2019 08:18AM Scrafgal wrote:
Have you checked your blood pressure regularly? Arimidex can cause a slight increase in blood pressure and those symptoms could be related.
Nov 18, 2019 12:44PM - edited Nov 18, 2019 12:49PM by LillyDuff
Here's a question that I can't seem to find much information on here.
I have been on Anastrozole for the past year and doing fine. Just joint pain and not too bad. I keep active and that helps.
I have a history of GERD cause by a sliding hiatal hernia and gastroparesis, so after much investigation to figure out the root gastritis and scarring of my esophagus, an endoscope revealed my final diagnosis. All before BC was found. I was on Zantac 150 mg. twice a day and was able to get down to once a day before bedtime due to the GERD. Change of diet and keeping upright during sleep etc. Everything seemed great until the Zantac recall! Oh, my word! I just stopped taking it as soon as the recall was announced. I didn't notice a difference so thought I was fine without anything until last week! After two weeks off Zantac, I am miserable and wonder if that's my issue or "something else."
Does Anastrozole cause gastritis? I now have the same gnawing feeling epigastric stabbing pain and feeling of fullness all the time! It's horrible. I recently had an ultrasound for the abdomen as a follow up to a gallbladder polyp that seems to be small and stable. The ultrasound was for the abdomen and everything was normal other than watching the gallbladder polyp. BUT, my gastroenterologist closed his practice! No notice at all and he is off working at a teaching hospital and not taking patients. So... I'm stuck waiting three months to get into another one. Yes, pretty much all the gastroenterologists in my insurance network in my area are booked up at least three months. What a nightmare! I have an appointment with my PCP in four days to get a plan of what to do in the meantime, IF that's my problem. I am in a lot of pain and eating is all of a sudden a horrible mess. I am losing weight as well for the first time since chemotherapy two years ago! I went from feeling just fine one day to having these horrible ongoing gastric pains the next with no change in anything other than discontinuing Zantac. The FDA pulled it off the shelves so I can't take it. I tried Pepcid and that doesn't seem to help. My pain is epigastric and seems to be right under my ribcage in the center and feels like a pulling heavy feeling. I fill up quickly with small meals. Totally confusing.
Is the Anastrozole the root of the pain but has been masked by Zantac all this time OR do I have straight up gastritis for an unknown reason OR is this a recurrence of my BC? (Of course, I have that thought in the back of my head.) My last endoscope was four years ago, so I feel I would like to push for another one to check on things given my history of BC since then and of course, gastritis, gastroparesis, and oh, I have a narrowing and scarring of my esophagus from the GERD that is ongoing.
Does anyone else have stabbing epigastric pain all the time while being on Anastrozole?
I have nine more years to be on this drug and not sure if gastritis is related.
Thanks in advance if anyone can chime in on this.
Nov 18, 2019 12:53PM HikingLady wrote:
LillyDuff I can't remember ever seeing what you're describing being mentioned on this thread, so maybe your gastritis is completely separate from your AI? Are there other acid reducers other than Zantac that you might be able to take? I'm so glad you'll see your PCP right away about this...sounds very awful, and losing weight is definitely something to mention to your PCP. Keep us posted.
Nov 18, 2019 01:14PM LillyDuff wrote:
That's the very question I plan on focusing on when I see the PCP. Too bad my gastroenterologist left before I could see him one more time. I was supposed to follow up with him after the ultrasound and I called to make that appointment and found out he left the practice. The group he was with is not in my insurance plan so I have to find a new doctor and of course, they are all booked! I'm just worried about recurrence besides the pain. This scares me and makes me so worried about possible BC spread elsewhere or a new primary.
Nov 18, 2019 01:33PM hapa wrote:
Pepsi - I have had the skin under my right eye burn and peel a few times now for no apparent reason. I never connected it to the AI. At first I thought it was just an allergic reaction to the eyeliner I had used (I rarely wear eye makeup) but it happened again and I had quit using eye makeup completely and also been sticking to just a couple moisturizers. I think for me it was just dry skin, and I also think my skin is just a lot more sensitive than it was before treatment. I put some pure unrefined shea butter on it for a few days and it eventually got better. I bought a couple different moisturizers that are more hydrating, which I use now. One is the desert rain creosote lotion from siphon draw apothecary for when I want to go the natural route (siphondraw.com) and the other is CeraVe moisturizing cream, which you can get at Target or CVS. Stuff that seemed like a good idea but didn't work for me was hyaluronic acid gel, or anything with fragrance or retinol. I don't know that I was experiencing the same thing you are though, yours sounds pretty severe. But the first thing I would do is think back over every bit of makeup or lotion or soap that you've used in the last few weeks and see if there's anything new. Or maybe just cut down on the number of products you're using to a few hypoallergenic things. This sounds like an allergic reaction to me.
Nov 18, 2019 02:01PM thisiknow wrote:
LillyDuff... "Too bad my gastroenterologist left before I could see him one more time."
I wish Doctors could take back control of the Medical Profession and their own practices. I have a Doctor I cannot see again until I switch out my Primary Care doc because he's not in the 'new group' my other Doc is in now. None of this makes much sense to me, but it does make me wonder if any of the docs care about keeping their patients as much as we care about keeping them.
There's help for your Gerd out there somewhere and I'm sure sooner or later you're going to find it!
Nov 18, 2019 04:45PM LillyDuff wrote:
Thank you. I hope you are right.:)
Nov 18, 2019 04:55PM LillyDuff wrote:
I just went to WalMart and saw Gaviscon on the shelf and thought about trying that. Thank you for the suggestion.
Instead, for now, I bought Tums and since I'll see my PCP in a few days run Gaviscon by him and see what he thinks. Something needs to calm my tummy down!:) Maybe since Gaviscon coats that would be good to use before bedtime to help protect the stomach and esophagus lining.
Maybe, also, this could be the "rebound effect" that patients get when they discontinue an antacid or PPI medication and I have to ride it out. I just want to be careful here, and find the source of the pain, then deal with it at that point. So much is going through my mind as far as "what if" the cancer came back somewhere and this is how it's presenting itself. Something is wrong, I just don't know exactly what. Hate the wait!
Nov 18, 2019 07:50PM GrandmaV wrote:
Pepsi1975 - sounds like an allergic reaction to something. Could be the anastrozole or anything else new you may have started, new lotion, tissues, something you ate, etc. I think a call to onco would be a good idea to see if maybe a break from anastrozole for a month or so, then start it again without changing anything else and see if it continues, or starts up again.
Nov 19, 2019 06:38AM Jeepers wrote:
hi I started taking anastrazole a few months ago and I think I’ve had some minor side effects like weakness and joint stiffness. I had a double mastectomy, 3 months of chemo and a month of radiation. I’m just wondering if anyone has decreased their dosage on their own...maybe taking it every other day rather than every day
Nov 19, 2019 08:23AM Ingerp wrote:
Jeepers--some of us did a lower dosage starting it (like every other day), but I'm not sure how effective it would be long-term to take less than the full dose.
Nov 19, 2019 08:35AM HikingLady wrote:
Jeepers The research I know about, regarding the efficacy of AI's is very clear about dosage and outcomes. I wouldn't choose, myself, to change dosage. My oncologist has been really clear with me about the evidence-based outcomes and NCCN (National Comprehensive Cancer Network's long-term treatment and outcome databases) guidelines for all of my TX.
My MO has not described any research about a different dosage having measured outcomes. Maybe there is such research, and it would be a good question to ask your MO? In other words, if 50% of the recommended dosage also has 50% benefit, then it could make sense as a well-considered risk/benefit decision. However, if there's not research that supports that, it could be that 50% dosage has much lower benefit. That's a question I'd ask, in your shoes, if I wanted to consider a different dosage.
For my DX and path report details, being on an AI is essential for good statistical outcomes on reducing Recurrence. In my case, Recurrence = Stage 4/mets. I know that everyone's DX and quality of life decisions about TX issues are different, of course.
I find my lowered-estrogen issues to be annoying, for sure, but not ruining my life. I have additional stiffness and joint pain for sure. I do at least 1 hour of (deep water + also walking) exercise every day, and when my muscles are strong, my joints complain less. I have an ongoing inner Grumpy vs Realistic Battle going on, for sure. Grumpy Me says "I hate this AI." Realistic Me says "Being on your AI increases your chances, BIG TIME, of living longer." Sigh.....
Nov 19, 2019 11:45AM cathy67 wrote:
HI, I did my first lupron injection this morning, and got 90 arimidex pills, will start to take it tomorrow morning. Hopefully no much side effect.
Nov 19, 2019 12:58PM MissouriCatLady wrote:
Jeepers: What I have found:
"Hormonal therapy carries side effects that are very unpleasant. It can be difficult to get a patient to want to adhere to taking that pill every day. Yet, this is currently the only real way, other than chemotherapy, we know to reduce risk effectively.We know from research, unfortunately, that between 40% and 60% of breast cancer survivors do not take their hormonal therapy as prescribed. Oftentimes, the reason they aren't taking it is because of the side effects. Patients need to speak up and tell their doctors, "These are the side effects that are driving me crazy and causing me to not want to take this medicine." There are solutions to some of these side effects, but the doctors aren't going to know to offer solutions if they don't know what the patient is experiencing.REMEMBER: It is crucial to take the hormonal therapy medicine as prescribed.Example:If the doctor asks, "Are you taking your medicine?" the patient will say, "Yes". He doesn't necessarily ask, "... as prescribed?" She may be taking it every other day so now she has half of the hot flashes and the night sweats. But we've never done any research to know if the medicine does anything for patients if they're taking it every other day. We only know that it helps taking it every day."
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Nov 20, 2019 12:28AM CindyNY wrote:
I too have a "hate/love" relationship with Anastrozole. Hate the SEs, love that it keeps cancer at bay. I've read about people who've taken a "vacation" from it, to reset SE, to then go back on it in a month or so. I'm not taking a vaction from it, because I know I'd have a hell of a time to make myself go back on it. Just power on!
Nov 20, 2019 06:47AM MACTAZ wrote:
hi all, I haven’t seen this issue on this site but thought I would see if anyone else has noticed it. Recently I noticed I have been retaining fluid, not extreme where legs and ankles swell but eyes are puffy, about 1 pound extra on scale - also very thirsty. I do drink in excess of 56 ounces of water a day and exercise daily by walking 5 miles most days. Interestingly my last two blood pressure readings were up on diastolic side ( typically was 70 now 89). I read a little on web md site that Arimidex can cause blood pressure issues ut just not sure. Has anyone else seen this happen? Not sure if I should call OC and check or let it go for another month or so and see if things settle down.
Nov 20, 2019 07:18AM HikingLady wrote:
MACTAZ Yes, retaining some fluid and excessive thirst definitely sound like reasons to check with PCP.
Nov 20, 2019 01:16PM Scrafgal wrote:
Yes, AI can cause high blood pressure but fluid retention also could be related to chemo-toxicity and its effect on your heart. Checking with your PCP and/or having your heart checked is a good idea.
Nov 20, 2019 06:47PM - edited Nov 20, 2019 06:48PM by MACTAZ
Thanks all, I will check with PCP. Until I can get in I’m going to watch my salt intake and have ordered a blood pressure cuff for home. That way I can keep tabs on what is happen8ng.