For Arimidex (Anastrozole) users, new, past, and ongoing
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good info, Spookiesmom!
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I want to let others know about an unusual side effect I've experienced from Arimidex - uveitis. That's a painful eye inflammation.
When I reported it to my onc, she'd never heard of any link to Arimidex. However, she forwarded the information to the clinical pharmacologist who found a paper documenting a link. The thought is that the lack of estrogen affects the eye, something that has been documented with Tamoxifen, although when the link was first posited, most doctors dismissed it. However, over time, the link has proven to be true.
I sometimes feel silly reporting everything to my onc, but since I have a history of unusual reactions to drugs, I do so. Turns out that thanks to my uniqueness, my oncologist is also broadening her knowledge.
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I've had eye issues--first high pressure on one side, then the other, all since starting the AI. It doesn't seem to be affecting my vision, though. My ophthalmologist is keeping an eye on it and recommended artificial tears because they're super dry too, particularly when flying (which of course I always forget).
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hello
i started taken Anastrozole in Jan 2019. Initially first 2 weeks expected side effects, hot flushes, painful joints, weight gain, nausea etc but then went on to suffer memory loss, confusion, anxiety, balance loss (collapsed in street), panic attacks, rage, dark depression and flash suicide attempts. Was taken off after 5/6 weeks and was still on suicide watch for 6 weeks. Chose to rely on the surgery/radiation and didn’t try another drug but 12 months later I still have brain fog, short and long term memory loss - half my vocabulary was wiped out. Brain pauses - and constant brain fog. Thank god suicidal tendencies went after stopping, but a year later I’m still struggling to get my life together as my brain is still not working. I use to be a CEO, now I have trouble holding a conversation
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I started Anastrozole in mid-Dec and still haven't noticed any SE's. I guess it just shows the vast differences in experience with it. My MO likes it best as there seem to be fewer SE's for most. I think I've read here that SE's might be delayed, so I'm just hoping and keeping my fingers crossed
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LondonGreen - We're sorry you find yourself here, but we want to welcome you to Breastcancer.org. We're sure more members of our Community will be around shortly to offer some insight and advice. In the meantime you may be interested in checking out the main Breastcancer.org site's pages on:
Chemo Brain Could Be Hormonal Therapy Brain
Online Program Seems to Help Ease Chemo Brain
We hope this helps! Looking forward to hearing more from you soon!
The Mods
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Wow. Just read that first link. This paragraph surprises me....
"Using a math formula, the researchers determined that hormonal therapy seemed to be the only factor linked to cognitive problems. Chemotherapy, fatigue, and depression weren't linked to cognitive problems. The researchers concluded that hormonal therapy seems to be a risk factor for memory and thinking problems."
It's worth reading the whole article.
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LondonGreen, I am so very sorry. All the things you have to deal with having cancer can be overwhelming. Try and stay strong, sending you best wishes my friend. Lisa
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I am on arimedex and the joint pain is sometimes unbearable. right now its in my tailbone of all places! i take glucosamine chondroitin and it helps somewhat, somedays the pain is unbearable
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Hi all!
I went off anastrozole in October of 2019 for a month to see if SEs would diminish. I had an appointment with my new oncologist, a woman, to re-evaluate, in November. I had not noticed much change at that time and she told me she didn’t think my hip pain, sleep problems, etc. were caused by the anastrozole. She recommended that I have an MRI. I decided to give it more time before I did that. She said my risk factor was extremely low, so she took me off the anastrozole 6 months early. My five year mark is in March. It is now the end of January and I have been off of anastrozole for 3 months. I am happy to report that my side effects are,for the most part, gone! And as an added bonus, the weight I gained while on anastrozole is going away! I have been feeling like my old self, again, for the first time in years!
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I just had my visit today and was told to stop the Arimidex. I have been taking it for 5 1/2 years. I can't say I had any horror stories but I do have a lot of joint pain and within the last year, I feel I am having more hair loss. I am anxious to see if I do feel different. So, you feel it took about 3 months to notice any changes? I was already overweight but for the past year, I have really been trying to lose weight and have lost about 40 lbs. I am hopeful stopping these meds will help with that too. Its a thing I wanted to hear that it was time to stop but then again, its a little scary.
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yes, it took about 2 1/2 to 3 months to really start noticing that my hips were not hurting, anymore. Even my hair is in much better condition, again. I am not shedding as much, anymore. I had a recall on my breast implants, so had surgery to have those replaced about 3 weeks ago. I’m really glad I have been off of the anastrozole for awhile before that! While I have been recovering from the surgery, I have been very inactive and I have still been losing weight! I guess as long as your reoccurrence risk is low, I think it is much better to be off of this drug! Hope you feel better, soon
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For the first 4 years, I took name brand but once I retired, I decided to try the generic, so for about a year and a half, I've taken generic. I think it has caused more hair loss. I realize as we age, we have those same issues but I'm anxious to see if that gets better too. My doctors told me today it would probably take 2-3 months to notice changes and that seems consistent with what you have experienced. I had IDC 1A so they say with that diagnosis, to take the meds beyond the 5 1/2 years the potential harm to bones etc. is worse than the risk of the cancer coming back. I sure hope they are right and I don't look back at some point and wish I had continued. since my cancer was low grade and slow growing, I know the recurrence for me is likely to be longer than 5 years and I think thats the scary thing.
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Hello everyone. I've been on name brand Arimidex, purchased through Eagle Pharmacy, for almost 4 years. One more year to go. I have no awful side effects which is why I never switched to generic. I didn't want to chance it. However, there is one side effect I do have and that's hair thinning. My part is not any wider but my hair is thin. I had fine hair to begin with but now it looks very thin. My son's wedding is in October and I don't know how to make my hair look good.
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I had posted part of this to another board but thought I'd add it here.
I got my labs back and things looked good but was encouraged to keep trying to lose weight. Next week is an echocardiogram due to family history, a BP check since I was high at the docs, a gyn appt. Then I can give all this medical stuff a rest for a bit! I have 32 more days to go before stopping Arimidex and am looking forward to that. It has not been horrible for me like for some women but I think it does push my blood pressure up. I have also had some insomnia and aches but bearable ptobably because I'm retired and can rest when I must.
I'm encouraged by reports here of feeling more normal once off the med. We'll see!!
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JoniB, I use a biotin thickening shampoo from Amazon, you might try that, it helps me.
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Thanks Lisa. I'm knew to the site and very blessed that I was very early stage and the surgery and radiation were pretty smooth with my amazing team at the Dubin Breast Centre. There are so many amazing women on this site who have gone through so much with the actual cancer. My husband died of Stage 4 Small-cell lung, and the five months he had were very tough for me and our toddler watching his side effects to the chemo, when he was older my son and I wrote a book together to help other young children deal with the loss through cancer - it was very therapeutic. But for me it's been the last preventative step of the treatment that has caused the most damage. I do seem to have had the most extreme mental fallout, as all my physical side effects went away a month or so after I stopped. Just this brain fog that I can't seem to shift.
Thanks for being there and prayers for all the incredible women on this message board who are fighting their own battles.
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LondonGreen, I am sorry about the loss of your husband. I have met some wonderful people in the radiation waiting room and infusion room with lung cancer. It is a nice thing you have written a book to help younger children - those things are so helpful!! I met a lady in the infusion room with her wig cap on, she had taken her wig off, and we talked about her grandkids and how they reacted to her not having any hair. It is through those that have been through it that we gain our best information! And I totally agree, it is the hormone pill for me that has caused me the most trouble! My last infusion I sat next to someone going through their first infusion, she has her2+ too, and I did not mention AIs at all. No need to burden anyone with that quite yet. It is a challenge for me to be the best role model I can for others.
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You and I are in the same position. I just stopped taking the Arimidex yesterday. I took them for 5 1/2 years. I was orig. told it would be 10 years but they now say there is no evidence that it will help. Your diagnosis is even similar to mine. IDC low grade, no lymph nodes. I was diagnosed in June of 2014. I am hoping stopping the meds helps me lose weight although I was already heavy before I started taking them so I can't really blame it on them.
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Angelia50, You and I are virtually identical as to Dx date. I had an Lx plus radiation. Started Arimidex in Oct 2014 and went off it Oct 2019. I changed MOs because I moved from Michigan to Spokane Washington. My MO here said in my case (and age - 74) he said there few benefits and more negatives. My PCP had me stop Fosamax as it has no worth for me beyond 5 years. The mild stiffness I had is gone. My hairline is still receding and my hair thinning. Part of it (all of it?) is genetics
HUGS!
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kale437 - sorry to hear about joint pain/stiffness. It seems to be one of the more commonly reported SE. For me, I think it is a less with brand name Arimidex, but still there. I get brand name through Eagle Pharmacy in Florida (DR sent the Rx). Insurance would charge maybe $8/pill or more. Buying direct, $2/pill. Health Care reform has a long ways to go. I think turmeric (curcumin) supplements help, also use turmeric and black pepper in food almost daily.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/27/2020 - CT showed that axilla tumor shrunk from 2.3 to 1.1
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I had a vision problem today and it was different than the ocular migraine problems I experience every fews years. My lower vision had a dark line that came and went a few times. I saw the doctor immediand now need to see a retinal specialist. There was a spot on my eye. Well, I immediately looked up anastrozole to see if it can hurt vision and found out it can cause retinal hemorrhage's etc. I don't know if this is related yet, but frankly scared the hell out of me. Lose my vision because of this drug? Has anyone had any eye issues since taking anastrozole?
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Hi Ladies! New to this group, because I'm new to anastrozole. Just finished 5 years of Tamoxifen, and hoping to make it through some years on this. Rushed tonight, but I just have to throw a question out there. I am only on day 5 - is it even possible to experience mood swings this early?? I'm a pretty even keel person, but really struggling to be myself today. Just feeling a little zoned out and struggling to participate in our family night tonight, which is normally a happy thing for me. It feels silly even asking this early, but this is the place for silly questions, right??
Looking forward to spending some more time reading, I can see there is a lot of experience to be gained from here.
Mary
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Hi AZ - more than I would describe mood swings, I was just bitchy most of the time on anastrozole. Much more even tempered on femora. Don't remember how soon it started - I was still recovering from taxol neuropathy and didn't realize how short tempered I was until the switch. Many of us have discovered that the drug and/or the drug manufacturer do make a difference with AIs so track how you are doing and don't let your MO tell you "it's nothing."
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Me too, just bitchy. Lasted a few weeks, then went back to normal crabby.
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Count
Yes... I’m with you all the way on insanity mood swings. I had ovary removal at same time, but the anger was incredible!!
So try to find a really good exercise program you are interested in and do it religiously, know adjusting to an Al takes months to years, acupuncture is known to help with side effects, and I’m a huge proponent of CBD oil orally and weight training.
Although a life long yogini these helped the above are helping me more. Hang tough.
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Count_it_al… - I've only been taking Anastrozole for 2 months. The first couple of weeks, I got triggered really quickly and I'm usually pretty even keeled. My family was a little on edge when that happened but it didn't last long.
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Hi all,
I am 50 years old, perimenopausal and have been on arimidex for a year and a half now. I also have Zolodex injection every 3 months to stop my ovaries. I am having a lot of sexual side effects. Zero sex drive. Vagina is so dry it is painful, even with lubricant. I stopped taking everything one month ago and I cannot believe how much better I feel. But of course cannot keep this up. Oncologist switched me to Tamoxifen yesterday and I am scared to take it. I don't know what to do... should I just stick it out for 4 more years? She said sexual side effects are less with Tamoxifen, but emotional side effects are worse. Advice???
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Thank you all for responding so quickly. Sometimes I start to feel a little insane when there is no one to talk to at the moment who would understand or have more than sympathy to offer.
I'm curious - you all mentioned feeling angry/bitchy.
My default bad days of PMS were rarely angry, more weepy/insecure/sad/just want to be left alone. Easier on my husband, harder on me! And I felt the same way last night. Do you find that your mood swings on the AI's mirror your PMS habits?? Planning to start a SE journal this weekend, and make better use of my gym membership than I have lately. Thanks for the suggestions to start off with!
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count it all - its been a while since I was first on Anastrozole, but yes indeed I would argue, start a fight, scream & carry on like the world was coming to an end, over much of nothing. And worse was, as it was happening I knew I was the irrational (crazy?) one. It passed but I think it took a few months, and yes, it reminded me of PMS.
The fast loss of estrogen is probably more to blame than the drug. You'll get through this!
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