For Arimidex (Anastrozole) users, new, past, and ongoing
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Lauramv Check out this very heartening thread, with people who are doing okay being on an AI
https://community.breastcancer.org/forum/78/topics/854403?page=42#idx_1234
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Hugs to you, PontiacPeggy. I wish I could be as healthy as you, HikingLady. Lauramv, you may not have any trouble at all, lots of women have no trouble.
As far as me, I still have a beer or two (or three) on the weekend (alcohol is not good for hormone positive women just in case you hadn't heard that). Someone posted on here to take folic acid if you have a beer, not sure if that is true or not, but I do take folic acid - I bought it when my counts were down with chemo, and there are thousands of tiny pills left, so I still take it. I met a man with lung cancer in the infusion room who talked to me about organic sulfur (aka MSM) and I take glucosamine/chondroitin/MSM for joint pain, as well as tart red cherry. We should all take our calcium and vitamin D to ward off Prolia - I bet that is thousands of dollars too! Good for you, SpookiesMom and your zero for Ibrance!! Very happy that is working out for you. I asked my surgeon at my last visit if I should keep taking all the vitamins, and he told me if I eat healthy - fruits and veggies, I don't need to (vitamin
.Lauramv - you more than likely won't hear from those who don't struggle with their AI on here, but they are out there, and I am hopeful you will be one of them. If you need a place to come for encouragement or support, we will be here. Hugs to you, and everyone, Lisa
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Thank you ladies for the response! I’m a week in on Anastrozole and biggest issue is finger joint swelling and pain. Hoping this subsides soon! I try to eat healthy, but will really cut back on the sugars and carbs! MO wants me on ten years, so need to make this work! Thank you! Appreciate this forum !
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Reader--I love when you guys who have been on this a while check in. We're all really anxious to hear how your body changes over the next few weeks. Congrats on <almost> being finished!!
Laura--I know exercise helps. Anything to move those joints. I do a mix of weight training, cardio, and yoga. I have arthritis in both knees and hips but must say my joints don't give me much trouble.
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Laura my 1st week was oh no with the joints, but it did get better. I walk and do weight bearing/cardio work out a couple of times a week. I am a little stiff in the mornings but once I get going I'm fine. Keep moving!!
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christiekoe, lgbert, lyyn4jas - and all others experiencing joint stiffness and other SEs from Arimidex. They are different for each person, it seems, which effects and how severe. Joint stiffness is the major effect from Arimidex, for me, particularly my middle finger on left hand which locks up. What seems to have helped me with Arimidex, is staying hydrated, staying active and stretching. Magnesium also helps. Eating less meat also helps. Some people report that CBD with or without THC helps, but it did not help me. Also taking the brand name seems to produce much less stiffness and trigger finger than generic. The brand name is $2/day if you buy it directly, and with my insurance was $8-10/day, go figure, it is a racket. https://www.eaglepharmacy.com/ Good luck.
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 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
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, if needed.
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.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology.
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Ingerp you are most welcome. We are all in this together in some ways and support is essential. I also did quite well for a long time. The last year has been more difficult and my DEXA is due. So I'll definitely stop back in.
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I am about to start Arimidex as well, and was wondering if there is a good time of day to take it. I understand it should be a time of day that fits into my movements, and easy to remember, but is there any other reason to decide on when to take it?
I am also fighting a cold, and wonder if I should wait until I am past it, so that I can identify side effects, if/when I have them.
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Try what time works best for you to remember to take it. Some say it interferes with sleep. If it does, switch the time.You can start taking it when you are ready, doubt having a cold would make a difference.
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I found that I could not take it on an empty stomach, so I take mine with breakfast.0
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I agree - take it when it fits with your schedule. I take it first thing in the morning with my thyroid pill. I've never had any problem with the empty stomach. I read early on that those who have other prescriptions do a little better with taking them because it's part of a routine. So figure out what something that you do daily at about the same time of the day, and jump in.
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Hello, all and thanks for the input. I was lucky and my IDC was caught very early (by ultrasound - not on mammo). I am 70 btw. I had a 1cm tumor, grade 1, ER/PR positive HER neg. ONCA score is only an 8! My oncologist is recommending Arimidex (generic since the brand is $1500 a month - WHAT???). I am not sure that I want to undertake those side effects for a change in recurrence rate from 6% to 3%. What does that even mean?? I had bilateral mx and now am coping with tissue expander pain and "discomfort". I used to do yoga 4x a week and now can't even lie on my side with these things in... but I digress! Please give me input on YES or NO for the Arimidex generic... I am so confused at this point - I thought after the double mx I would pretty much be free and clear. BTW the breast surgeon simply said - "wow - ONCA score of 8 - you want to take a pill? You don't want to take a pill, right?" Then I saw the oncologist and she made me feel like if I don't take it, it will be my fault if it recurs somewhere else in my body. I have rambled on enough - I realize how lucky I am and really admire those of you you have had to endure so much more... thank in advance for all your input.
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Hi. I am new to this thread. I started Arimidex in December and had little or no SE until now. The hot flashes, especially at night. My left wrist felt like it was broken and then OK 2 days later. This morning my lower back hurts. My Cholesterol is up. My BP has increased. My hair is thinning and facial hair is increasing. My GI system has become very sensitive. Any indulgence causes problems. I had lunch with one of my friends yesterday with a sweet treat and didn't even get home before having to use the bathroom. I have to be on this med for 5 years. Any helpful suggestions?
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Dayna—cutting your probability of recurrence in half is pretty significant. I think the less estrogen you currently have in your body (probably not much at 70), the gentler the AI will probably be. Some people seem to notice a difference in different formulations of the pill but the SEs are more likely due to the lower estrogen, which will happen with any of the brands. I can't say I've had zero SEs, but they are tolerable.
I’ll add that my BS said that AIs have the “biggest bang for the buck.” In my case, it has a greater impact on probability of recurrence than radiation or chemo.
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Your body still makes estrogen in the adrenal glands throughout your body. Anything to keep the beast from coming back is worth it IMO.
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Dayna1234
If I had your diagnosis, onco score, and double mastectomy at 70 yrs old - No I wouldn’t take it. That's just me. You do you.
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Dayna1234 In your place, I'd ask my oncologist to clarify exactly how much your AI reduces your overall lifetime risk of recurrence. Cutting risk in half is great. Of course, you'll need to weigh that against any side effects that come up. All of my side effects were much easier a couple months after I started my AI, as my MO had predicted would be the case.
Ask for a game plan, going forward. My fears about being on an AI made me ask a lot of What If questions. My MO said that if one brand were difficult for me to tolerate, I could take a two-week "re-set" vacation, which often helps a lot, or switch brands.
I'm not finding the side effects to be difficult to manage, if I get daily exercise, stay hydrated, etc. In my case, the additional "benefit" (= reduced % risk of recurrence) is very large, so I'm committed to being on it. I have occasional warm flashes, and some joint challenges, but it's nothing extremely difficult to accommodate.
petite1 That stuff sounds challenging. Be sure to rule out other reasons for your discomforts; sometimes we coincidentally come up with a new health issue, and maybe it's NOT the AI causing it. As I've gotten older, sweet treats wreak more and more havoc with my GI tract, so I haven't had that worsen taking an AI, but if you suddenly have new stuff going on, it seems important to establish the cause. All of my issues got better within 4-5 months of being on my AI. I also have higher cholesterol. Sigh. That might be solvable with medication, and meantime, I'm doing an experiment (with my PCP's approval) for the next three months. I'm eating oatmeal or homemade granola every morning, which once upon a time (6 years ago) lowered my cholesterol a whole bunch in just 3 months. We'll see.....
How I'm managing the joint discomforts: I have to do 1 hour of daily exercise. If I don't, ALL of my joints yell at me. This is probably just my arthritis getting worse as I age, plus being on the AI. I've come to think of my hour of daily exercise as another pill to take, but I don't mind this one. I get in the pool every morning for 1 hour and do 'deep water aerobics,' which is vertical exercise with resistance ankle cuffs + foam barbells. Feels good, like I'm an astronaut, weightless in space. For me, the AI bullying me into daily exercise is an acceptable challenge.
AI's usually cause worsening of bone density: I had osteopenia already diagnosed before starting my AI at age 61. Therefore, I'm on a bone med infusion, Zometa, every 6 months. This particular bisphosphonate also protects against bone mets. Double benefit for me, and as a breast cancer patient, I qualify for this to be covered by my insurance. The infusion takes about an hour, and it makes me a little slow and icky feeling the next day, but it's just twice a year. I will have DEXAScans every 2 years to check how bones are doing.
Managing the emotional and psychological stuff: Mentally, I waver between "I am so pissed that I have to be on this icky drug" and "Thank heavens for evidence-based medicine and this AI that gives me a really good shot at living a longer life." The two sides of my brain often have rich debates about these two positions. Every day, I have to choose which voice shouts the other one down. Thank heavens these inner voices aren't audible to others, or I'd be put away!
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I would just add some women have no trouble whatsoever - and some can take the generic medications with no problem at all. And there are different generics, talk to your pharmacist and switch if the one you get gives you side effects. My doctor and my pharmacist friend at the hospital both think generics and name brand are the same, and I found the Accord brand suits me better, but that is just me, some women like other brands. I did manage to get name-brand with a Good RX card at CVS, but this was after I tried all the generics.
Lots of good advice from others above. This path is doable with the help of others, and suggestions. And if you have a bad day, we are here for you.
I've only been on it almost a year now, and for me, things (knock on wood) are getting better.
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Hi all, I love how active this thread is! I just started arimidex about a month ago after a year on tamoxifen (this was always the plan, just waiting to confirm that I was officially menopausal). I definitely have some more achiness, joint pain, etc., though I am not too worried about that. What I am worried about is that I have been feeling more and more depressed and having kind of wild mood swings where I get upset and cry about things that aren't really a big deal. It is really out of character and making me feel like a crazy person!
Has anyone had side effects like this on arimidex that then resolved? My MO wants me to stop for 2 weeks and see if it gets better, but with my risk profile I'd rather carry on if there's a reasonable chance it might go away with time (but not too much time!).
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beeline - yes, I had similar symptoms early on. I'd argue over much of nothing, be fighting and know I was acting irrational but couldn't stop the feeling of being infuriated. It did subside probably 3 months out from start of AI. It was almost like PMS. Best of luck to you. 🍀
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I, too, was more emotional at the beginning. Cried easily when I least expected. I leveled out after the first few months. I also had a oopherectomy which is a double whammy of estrogen loss.0
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HikingLady, Had oatmeal this morning. Simvastatin has kept my cholesterol in check for years. I assume the PCP will increase it. I have been exercising about 30 minutes a day, plus 30 minute walk. I had trouble with the exercise yesterday. I had to gently work on stretches and yoga. My back is still hurting this morning. Once the pool warms up, I will use it daily. 48 degrees in sunny Florida this am. In much younger days I had terrible hot flashes and was very glad to see them gone, but they are back. ugh Thanks for the encouragement.
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Hi, I have also just started Arimidex and have taken it for 3 weeks now. I am also experiencing very low moods especially in the evening. I am taking Paxil and Gabapenten for hot flashes which so far has really helped. Not sure if the mood swings are due to the Arimidex or the fact that I have been diagnosed with cancer again after 15 years of being cancer free
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pabl48 - I'm sorry for your recurrence. Sending you big hugs. Lisa
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My mood swings, and especially my anger, was much less on femora than anastrozole. But hair thinned more. I found that the generic manufacturer did matter.
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I had no mood swings. But I had no problems going through menopause either. I took the Teva generic for about 4-1/2 of my 5 years on anastrozole and then it wasn't available. I was pleased that I noticed no differences between the Teva and the other generics. I also had few SEs. My hair was thinning and receding before BC. It has continued. I also stopped Fosamax when I stopped anastrozole since my Primary said there is no benefit after 5 years of it.
HUGS!
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Good morning. My back is not hurting. Hope nothing else starts hurting. I have not had mood swings, as yet.
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Good morning, and yay your back is not hurting! Hugs, Lisa
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Good morning. Slept well without hot flashes and nothing hurts. Someone mention taking Claritin. I took one yesterday. I did have a better day.
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Thanks everyone. pabl48, so sorry about the recurrence.
It is good to hear the mood swings/low mood subsided for many!
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