Jul 2, 2019 12:34PM sdianel wrote:
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 07:46AM - edited Nov 15, 2017 02:07PM 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 16321 - 16350 (16,920 total)
Jul 2, 2019 12:34PM sdianel wrote:
Jul 2, 2019 12:40PM bennybear wrote:
sd@niel, hope you start to feel better, not an easy decision. But glad your risk was low and that is a choice for you.
Re the hair Also look for shampoos with saw palmetto, rosemary, I found an Avalon organic. I also am trying castor oil on my scalp and Nioxin conditioner. I saw a dermatologist and he recommended romaine and another hormone but my MO didn’t want me to take that. There is a whole thread on hair loss. But hopefully your hair will improve off the meds.
Jul 2, 2019 04:46PM 2002chickadee wrote:
Humblepeace - I had an MRI of my right hip recently, because I have both-sided hip pain when I sit too long (thanks AI) but only one side hurt consistently and more with exercise. It hurts in various places, front, back, side, deep, it's very elusive. MRI revealed I had tendinopathy of the gluteaus medius, which means I have more physical therapy in my future after I (hopefully one day!) finish PT for my arm/shoulder/breast/chest that I've been in since ending radiation. No idea what caused it but it seems appropriate that all my troubles are on my mastectomy side of my body. A massage therapist I see conjectured that it could be from some scar tissue in my abdomen (from DIEP reconstruction) causing my pelvis to go out of alignment and resulting in hip problems. I wonder if your hysterectomy surgery has anything to do with it?
Prior to breast cancer, I had sacrum issues that were caused by my sacroilliac joint going wacky during a pregnancy.
I think there's a ton of different ways to have back or hip problems that have nothing to do with breast cancer, so try not to go there if you can!
Jul 2, 2019 08:51PM CindyNY wrote:
sdianel- Best wishes to you. You have to do what's right for you, no judgement.
Jul 2, 2019 10:34PM Joytxs wrote:
I’ve been taking anastrozole since March. My joints ache, feet hurt, back is sore. Seeing all your responses that are similar doesn’t make me feel better, just makes me realize I’m not alone. I wish all of us to feel good again
Jul 2, 2019 11:24PM HikingLady wrote:
This is a damned if you do, damned if you don't, bargain with the devil, for sure. I take my Anastrozole every day, and am glad that it (statistically, who knows about ME) protects me (= gives me good odds anyway) against a "recurrence." (= metastasis/Stage IV) I am absolutely more comfortable if I do my 1 hour of exercise (strengthening + aerobic) every day. On the days I cannot do exercise, my joints are all miserable. I'm rebranding this as inspiration to exercise, when, in fact, it's survival. I am much more uncomfortable on the days when I cannot exercise. In fact, more exercise is always better, so I'll take this not-gentle-nudge which makes me prioritize exercise to manage the AI side effects.....
Just like Joytxs, I feel grateful to know that I'm not alone in this issue....
Jul 2, 2019 11:28PM Spoonie77 wrote:
Hiking Lady - I love the way you put that! I second the rebranding idea. :)
Jul 3, 2019 06:57AM Ingerp wrote:
2002--coincidentally, I've been dealing with a hip/inner thigh issue pretty much since I started Anastrozole. I can't *exactly* attribute it to that--it's on the side I had knee surgery 15 years ago, and I'm sure I've been operating that leg a little oddly ever since (in fact, when I went to my PCP for a PT referral, she said, "well *that* hip sure operates differently"). I did PT for about a month and it was helping, but then I went on vacation and never re-started. The pain is back now, and I'm wondering if I have the energy to start up PT again (or, really, I could be doing stuff on my own). It's true what they say--growing old is not for the weak.
Jul 3, 2019 10:23AM Tappermom383 wrote:
Just refilled my prescription and rather than getting the Accord generic, which I have been taking since July 2017, I got one distributed by Rising Pharmaceuticals, manufactured by Natco Pharma Limited of Kothur, India (nice of them to put all this info on the label).
Has anyone else gotten this generic? I’ll be curious to see if my SEs change (sore left knee, tingling and numbness in left hand and wrist, foggy brain, dizziness, dry cough).
Jul 3, 2019 01:47PM - edited Jul 3, 2019 01:50PM by Macushla
I'll weigh in on my own experience, knowing that every person is different and there are so many extenuating circustances. I started Arimidex on June 26 2018 —so just over a year. I am not someone who usually gets side effects from meds, and I also don't read about possible side effects until after, because after going through surgery and treatments for cancer ( and I think I'm not alone in this) I am sick of scrutinizing every single speck and movement and feeling and either equating it with the cancer or worrying that it means something. My feeling was - this has been determined to be the best treatment for me, I will start it and see what happens. If symptoms come up I will look into it. Anyway...
I had low level nausea after about 2 1/2 weeks that lasted maybe 3 months? possibly 4 months. By low level I mean I never threw up, but it was general nauseous feeling like i *wanted* to throw up. What was odd for me is that I take my pills every moring about 6:15am, and the nausea did not kick in for me until after noon. No idea why. I experimented with taking it at lunch time, but didn't like having to take my pils with me everywhere. I drank a lot of ginger ale, ate some crackers, but eventually what worked for me was that when it kicked in, I would get up from my desk and take a brisk walk across campus. And I mean brisk, almost power walking. And eventually, the nausea simply stopped! Hooray!
About 6 months later I have the standard side effect - joint pain.hands, hips, knees, ankles (head, shoulder, knees & toes, knees & toes!) As someone above said also, I too already have osteoarthritis along my back, and arthritis in my left thumb - which stinks as I am a crocheter) so i am used to some aches and pains but this exacerbated them. I have a high tolerance for pain, but it started impacting my life in that I couldn't sleep, my hips and knees in particular feel on fire. I used to be a stomach sleeper and after the surgeries can't comfortably do that anymore, and I find it difficult to sleep on my back. So whatever side I sleep on feels on fire. I have been taking advil every 5 hours, but eventually 2 weeks of hobbling around like I'm 100 years old, and the familiar locked up hands where I can't fully open or close them - I finally called the doc. They gave me a Rx for tramadaol which I tolerate very well. I take only half a dose and it helps me sleep more comfortably.. I ice my knees, but really getting up and walking is the only thing that helps me. They had me stop the Arimidex for a week, until the pain got under control, and I restarted it this week. At a checkup yesterday my Onco said if the acute pain comes back, she would switch me to Tamoxifen, which I really really don't want to do. I've invested a year in Arimidex and to me, the tradeoff of the joint pain is better than the side effects of Tamoxifen. My sister is a breast cancer survivor also - and was developing endometrial cancer - thy believe from the Tamoxifen.
I say try it. Overall - listening to other people's stories, my side effects have been minimal. Everyone is dfferent. I vote for try it, and don't front load yourself with side effects, I really believe sometimes they can become a self fulfilling prophecy. I have hot flashes now also, but if I had gone through menopause I would have also! I take calcium and high dose vitamin D with the arimidex and is it helping? I can't say for sure, but it's def not hurting. All of us here have gone through so much already, we can take it, we're the lucky ones. <3<3<3
Jul 5, 2019 11:13AM Stellawt57 wrote:
Macushla, I totally understand what you're tolerating with your arthritis. I had been taking tramadol for my arthritis prior to my dx and I took it only when I had extreme pain. I am also was experiencing other SEs and decided no more Rx and had my MO refer me to an integrative dr. I started acupuncture in mid May and that has helped with all of my SEs, my insurance pays for 24 treatments per year. I started with 2 treatments each week for a month and am going once a week now. Once I go back to my teaching job I'm planning to go every two weeks for the remainder of the calendar year. I also take curcumin and eat very little to no gluten to help reduce the inflammation. I have found all of these interventions have helped to make my SEs very tolerable or manageable so I still have a good quality of life! My DH is thankful the change so I'm more tolerable to around, love him for his patience.
Jul 5, 2019 09:22PM Taco1946 wrote:
Stellawt59 - my "attitude" got much better when I switched from anastrozole to femora. I don't have quite as short a fuse.
Jul 5, 2019 10:22PM SimoneRC wrote:
It finally happened. Nothing I planned. I picked up my refill today.... and it is TEVA! I will be interested to see if it is any different. Usually, it is Accord. There was one other one time. Been taking AI’s for 14 months. Stiff hands and knees in the morning have been my most annoying side effects. I am interested to see how they feel on TEVA
Jul 8, 2019 09:52PM Janett2014 wrote:
I will finish my 5 years of Anastrozole in a couple of weeks. I have only had mild side effects, and some of those could be normal aging. I’m very glad to be done with it though, and I hope it did its job!
Jul 8, 2019 10:09PM PontiacPeggy wrote:
Janett2014, I'm not far behind you. I finish in mid-October. I look forward to being done and yet it is a bit scary. Like you, I've had few problems. I turn 74 this week.
Jul 9, 2019 01:14AM Reader425 wrote:
PontiacPeggy and Janett2014, am also on the 5 year plan assuming good things from October's mammogram. Will finish Arimidex February 2020 having also had "manageable" side effects. I was just thinking the other day I'd be glad to finish but it's also a little scary stopping!
Jul 9, 2019 02:30PM PontiacPeggy wrote:
Spookie Thank you! How are you? I've missed hearing from you!
Jul 9, 2019 07:01PM Spookiesmom wrote:
Don’t want to hijack this thread, but.......
After 4 years on this pill, about 7 months on tamoxifen, was off all meds for about a year. In January this year, I started having symptoms. PET/ct lit up on the non cancer side. BS took 11 nodes, 7 were positive. Just finished rads again! last week. Started Ibrance/letrozole yesterday.
I always knew I was high risk for reoccurrence because of my weight. Figured I’d deal with it if it came back. It did, I am.
And while it is a bummer, I don’t want to scare anyone. If you can take the pill, handle the se, do it!! I couldn’t.
Spookie and Kris make me go to dog park every night it’s not raining. Gets us all out of the house. 😂😂
Thanks for asking❤️
Jul 9, 2019 07:31PM PontiacPeggy wrote:
Spookie, I'm sorry to hear that. You are one strong person. Keep plowing ahead. Our pets are so often our saving grace, aren't they? Glad Spookie and Kris get you out. Sending you loads of love and comfort.
Jul 10, 2019 09:18PM egregious wrote:
((((Big ol' hug for Spookie))))
Today was my first mammogram since radiation. All clear. I may resume breathing again soon.
Jul 11, 2019 10:28AM MissouriCatLady wrote:
I thought I should share this somewhere where Arimidex folks go, since I didn't know about this. I hope you don't mind. I am on anastrazole for the past 3 months or so and doing okay, not great, but okay. This comes from SpecialK on the triple positive board:
For those experiencing side effects on assorted aromatase inhibitor drugs, you might find that switching manufacturers of the same generic, switching to the name brand, or switching to a different drug can alleviate some side effects. Generally, finding the fewest additives and fillers works the best, but that is not universal. Here is a tool, previously posted by coachvicky, for determining which manufacturer add what, and also a link for the name brand Arimidex, not paid for through insurance, but rather supplied directly, for $30 per month.
I asked my MO if he agreed with this, and he did. I asked my insurance about paying for Arimidex name brand and it is $240 a month. I am going to get the $30 prescription from Eagle Pharmacy in Florida for one month, just to see if the side effects are better. Maybe this will help someone. Thank you, Lisa
Jul 11, 2019 11:22AM LeesaD wrote:Further to what Missouri posted- I started on Teva brand in Sept 2017. Was lucky enough until March of 2019 to be able to find it at various local CVS’s. I was very afraid to switch brands to another generic so I contacted Eagle and went on brand name Arimidex. So it’s been almost four months on brand name and I have to say I’m feeling better than I did on Teva. The o my side effects I had on Teva was severe joint pain and it has subsided by about half on the brand name. Even if Teva comes back I’m sticking with brand name. For $360 out of pocket per year it’s cheaper than what my pharmacy deductible was anyway and I feel so much better.
Jul 11, 2019 07:30PM SUPer52 wrote:
I am new to this site and posted earlier today on an older discussion regarding anastrozole., so I am re-posting here. I started anastrozole on May 11, and I just began my third 30-day supply. So far, I have only received Accord brand from my pharmacy. I cannot complain (yet, anyway) about any bad side effects other than some slight dizziness the first day or so of taking it. I know some of the side effects from the AI drugs may not show up until much later on, so when pharmacies change brands, how does the patient know if a new side effect is related only to a specific brand or to the drug itself? I have read many mixed reviews about the side effects of anastrozole, so I am trying to be vigilant about my bone health and staying active to keep my joints loose and mobile. I remember a commercial from several years ago for an arthritis medication that had the tag line " a body in motion tends to stay in motion," so I'm hoping that is true lol! My bone scan showed I meet criteria for osteopenia in my spine and both hips, which was a decline from one I had four years ago, so I agreed to an infusion of zoledronic acid, with the concern of the rare yet very serious side effects ever present in the back of my mind. The plan as of now is that I will receive an infusion every 6 months for three years.
Anyway, LeesaD, I am very interested in your comment that you feel so much better since you have started on the brand name drug. Did your MO have to specify brand name on your prescription? If I begin to feel side effects in the future from this drug, I am going to ask my MO about it. So far, I can't complain about any pain or discomfort.
I do notice my hair has been shedding quite a bit, but I've always felt like my hair sheds more than the average person, so I'm trying not to stress about it too much yet since I know stress will only make it worse. Maybe it is from the anastrozole, and I know some women do experience significant hair thinning from this drug, but I am praying it is just from the stress of the past few months and that it will level off before it becomes noticeable. I used to have so much hair, but I noticed it thinned a lot over the past few years anyway as I was further along in menopause. I am 52 and finished going through natural menopause when I was 40, so I do worry about how much older or further into menopause this drug will make my body believe it is.
I appreciate this thread to learn from the experiences of others regarding this AI. Of all of my treatment plan, starting this drug was what had me most worried.
Jul 11, 2019 08:05PM HikingLady wrote:
SUPer52 Just like you, I was fearful of starting the AI. There is a list of 'side effects,' and if you read them all, it's rather horrible! Naturally, I expected that I'd have every single possible problem, but NO. The truth is (says my MO), most people just get some of them, and a lot of his patients do just fine and manage what comes up. The "side effects" are mostly our body's reaction to less estrogen. Connective tissue (joints), etc. And, in some cases, some people are extra sensitive to the fillers along with the active ingredient, so maybe one brand is better than another for some people. Again, my MO says that he hasn't seen a particular magic one that's better for everyone, and most of his patients do okay on the one I'm on.
I'm doing quite well on the Accord brand of Anastrozole. The first few weeks, I felt super creaky--joints would freeze up and it was hard to move. That's better now. Thumb joints are weak. None of this is really ruining my life. I just use jar-opening devices now. And, the creaky joints are probably still A Thing, but I'm very committed to 1 hour of daily exercise. As I've regained strength and muscles, my joints have stopped complaining. Also, my MO told me that my body would "adjust" to my AI, and perhaps that's also an explanation. I have not had hair thinning. I have very slight hot flashes, like Warm Moments. These Warm Moments are absolutely not nearly as bad as when I was on Tamoxifen (see my bio below) and also during menopause.
If I sit still for awhile in one position, it's hard to move again. This is partly AI for sure. Also partly being 61 and having some arthritis. It means that I have to move kind of slowly for a few seconds when I get up or get off my bike after 1 hour of riding, etc. It makes me feel exactly 150 years old. But, then after 20-60 seconds of moving, everything is fine again.
I don't have severe joint pain, except what I already had (some arthritic aches and pains in hips and knees) before taking this medication.
Same as you, I have osteopenia, and so I have Zometa infusions every 6 months---I've had two of those so far. The day AFTER the infusion, I'm super sleepy, have to have a nap, and very low energy. I feel as though I have a slight flu, a bit of a fever, and I have to just lie around and not do much that day. I drink a lot of water for a couple of days, which helps. Nothing worse than that one day of feeling a bit under the weather.
Jul 12, 2019 12:38AM HikingLady wrote:
I also pay $0 for 3 months of Anastrozole. Possibly because I've already met this year's deductible...
Jul 12, 2019 08:21AM MissouriCatLady wrote:
MO has to specify brand name (he just sent my prescription to Eagle Pharmacy). I pay less than $3 for anastrazole. I have BCBS and to get Arimidex is a $240 co-pay. I hope, one day, our drug companies cease to become millionaires.