For Arimidex (Anastrozole) users, new, past, and ongoing
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thanks! My 6 mo with my MO is coming up i 2 weeks
Will get blood work. My cholesterol has steadily climbed
The Mo wants me on something but my pcp and hesrt Dr disagree as my ratios are ok. But if its gone up again I may reconsider
So far I am being stubborn about not taking a. One med
I have osteopenia in most areas and 1 point from osteoporosis. Such a domino affect..
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Hi everyone! I rarely post or come to this website much anymore because I am out happily living my life. Im 4 years out from treatment , 2 years on Tamoxifen (too many side effects) 2 years on Arimidex. Im 54 and in the best shape of my life. I lift weights 5 times a week, cardio on my Peloton bike 5 times a week. Hike , walk, live my life. Light lymphedema in my left arm does not keep me from doing anything. i deal with the potential bone loss from Arimidex with excercise !nd supplements. I take I a calcium magnesium zinc combo called Bone Up, tumeric, vitamin D3 and Turkey Tail mushrooms. I eat well, rest , and roll with the menopause side effects which have gotten better over time. It gets better, keep active, eat well, dont drink too much, live your life.
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HikingLady, Thanks so much for the information and support. Dexa scan coming up in a few weeks, mri on spine, and more doctor appointments- seems like it never ends.
Susansfca, you are really rockin it! I’m getting up tomorrow and putting on my workout clothes! So nice to hear the positive.
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Hello Ladies,
I could use a little advice. I was on tamoxifen for 6 months. I had many of the usual SE's (dizziness, aching joints, back pain, rash, etc) which all eased up or stopped over the six months. Well, I had a hysterectomy 8 months ago and started Arimidex. Well the joint pain increased within the first couple of months. The back pain returned, but not daily. I also seem to have developed one finger on my left hand side that gets stuck every morning. However, my right hip and right knee are the most troublesome. The pain isn’t too bad in the morning but as the day goes by and I’m working and moving around it gets bad.I've had a full body scan about a year ago during my early months of tamoxifen which was clear. It did show some arthritis in my right hip and in my back. I'm also experiencing some dizzy spells about once a week, but a sense of lightheartedness frequently throughout the day like when on tamoxifen. I had a clear brain scan in November 2018. Anyone else have these side effects increase when switching to Arimidex from tamoxifen. Thanks for any information/advice.
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susansfca THANK YOU for this positive report! I love the 'living your life' attitude, and a really cheering survivor story. This is really inspiring and hopeful and helpful!
Humblepeace I already had some arthritis before starting Anastrozole. On it, I have slightly achier and stiffer joints. I feel better when I start moving again after sitting. It's best when I get my hour of daily exercise and worse if I don't. My thumb joints are weaker and don't work as well as they used to; I have some new jar-opening work-around techniques. I sometimes take an NSAID, which helps a lot with the mild pain and joint stiffness. I have an Rx for Meloxicam, which lasts for 24 hours. My experience being on the AI is that it makes my existing aging stuff just a bit more noticeable.
Your dizzy spells sound worrisome; be sure to report that issue to your triage nurse or whoever can advise or your MO. Try drinking a bunch more water? That has often helped me with various side effects. My nurse relatives say that as we get older, we don't get as thirsty as we used to, so we can easily get dehydrated, and that can affect all the body's systems.
The 'finger stuck' is something that I've read can happen--there are definitely joint problems that can arise with AI's, like "trigger finger," and there are a lot of solutions out there for that, like PT and surgical repair, which my PT friend assures me is less awful than it sounds---a simple solution, actually. He just had that surgery and it was an easy fix. So, be sure to report all these things, and keep advocating to your MO so you can find solutions to the problems that worsen your quality of life.
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Susansfca- Loved your post- thank you for inspiring so many of us that need it! I saw the NP at my oncologists office last week. Her answer for everything was exercise lol. So I'm trying to kick it up by moving more. I know there's an exercise board, but maybe we need a separate one for those of us trying to jump start our moving!
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Suansfca, A big Thank You for the enCOURAGEment - so inspirational for all of us. I love to celebrate stories like yours with my family and friends; it keeps me on track to where I want to be. And I totally agree, we must all find the best way of living our new lives. Focusing on the positive, minimizing the negative. Here is to everyone's Spring renewal for a better way of life!
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BadLuck - it really is a "catch 22" with BC, the treatments/drugs used on BC and the drugs used to counteract SEs from those drugs. Check this forum for those who had good results switching generics or switching to the brand name for Anastrozole/arimidex. I did get an Rx for the brand name, and even got a 30 dose bottle. It had been several months since I had taken anything, and my fingers were feeling better, so I did not try it. A few months later I asked my oncologist about Tamoxifen, even though I was way past menopause. She gave me an Rx and I have been using it. Whether or not it is doing any good, who knows. There do not seem to be any metrics for either AIs or tamoxifen, just studies that X percent of those taking it for Y years had Z percent less recurrence. I did get an increase in leg cramping (calf muscles), with tamoxifen, sometimes quite painful. The magnesium glycinate and potassium seem to keep that at bay now.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinal node removal, negative. – 1. 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 sentinal 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 do 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. 2/2019, trigger finger and stiffness much better.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
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BlueGirlRedState RE: Tamoxifen vs AI's
My oncologist told me that for me, the AI lowers my recurrence risk by 50%. It moves me to a 90% chance of being cured/10% recurrence risk. If I can't tolerate the AI, and have to switch to Tamoxifen, the benefit is a 40% reduction of risk of recurrence. I'm not sure if that's just me and my diagnosis or whether that protective % benefit is the same for everyone, but the idea was that Tamoxifen also has a lot of benefit, and can be a good option for someone post-menopause who can't continue on the AI. So, you're probably very protected. I took Tamoxifen for 5 years after my 2003 breast cancer, and I didn't have any difficult side effects.
I am doing fine on Anastrozole. Some joint stiffness. Very infrequent and slight hot flashes. No pain. Weak thumb joints, so I'm babying them. I exercise daily, and the more muscle tone I have, the less complaining from my joints.
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I've been on Anastrozole for 6.5 years and each year the side effects get less. I would say the SEs now are 65 to 70% less than they were early on. The first two years were really rough, I'm not going to downplay that as some days I could hardly walk. But I knew i had to do it to cut my risk by 50% which is what my MO told me in my case. I am now at 7.5 years out.
My sister has been on Anastrozole for 4 years, and she has less Side effects as well as time goes on. Our MO told both of us - 10 years or maybe the rest of your lives as long as your bones hold out. We are full of gratitude every day that we can cut our risks by this drug. We can predict the weather and have joint pain, but to be honest, I have learned to live with it in the joy of surviving a very aggressive cancer. I was only able to take Herceptin for 3 months due to heart issues, so I truly than God every night when I take the drug.
As I side note, I have a friend whose mom is 86 and just diagnosed with a tumor the size of an orange, and cannot do chemo. The tumor is too big for surgery at this point. Her MO started her on Anastrozole to try and shrink it enough for surgery. Within ONE MONTH, the tumor had shrunk 25% just by taking Anastrozole! That was absolutely shocking to me!
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I've been on Anastrozole for 6.5 years and each year the side effects get less. I would say the SEs now are 65 to 70% less than they were early on. The first two years were really rough, I'm not going to downplay that as some days I could hardly walk. But I knew i had to do it to cut my risk by 50% which is what my MO told me in my case. I am now at 7.5 years out.
My sister has been on Anastrozole for 4 years, and she has less Side effects as well as time goes on. Our MO told both of us - 10 years or maybe the rest of your lives as long as your bones hold out. We are full of gratitude every day that we can cut our risks by this drug. We can predict the weather and have joint pain, but to be honest, I have learned to live with it in the joy of surviving a very aggressive cancer. I was only able to take Herceptin for 3 months due to heart issues, so I truly than God every night when I take the drug.
As I side note, I have a friend whose mom is 86 and just diagnosed with BC has a tumor the size of an orange, and cannot do chemo. The tumor is too big for surgery at this point. Her MO started her on Anastrozole to try and shrink it enough for surgery. Within ONE MONTH, the tumor had shrunk 25% just by taking Anastrozole! That was absolutely shocking to me!
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I am one who thought I was doing ok on Anastrozole, but due to joint issues, hair loss and a fractured elbow I stopped it after three months. I was switched to Exemestane and added in Fosamax. Last appointment I was told in my case there is onlya 2 percent improvement with the AIs.
Got my bone density results and they have dropped 10% after only 6 months on these drugs. I now have osteoporosis and am very upset, I really think each one of us needs to be given a personal risk benefit analysis so we can make the best decision for our bodies.
Basically I have doubled my fracture risk not to mention all the other side effects for 2% improvement in recurrence rates. Not sure it’s worth it for Me!
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thanks denise-g
Thats uplifting and huge news about your friends mother!!
Perhaps one day the AI can replace chemo!!
Im struggling along. I take Arimidex
My joints ache, i get flu like symptoms that come and go
Im a point from osteoporosis, and my cholesterol is climbing
So far i have refused the bone meds, heart dr is monitoring but as yet doesnt want me on a statin
I take the arimidex first thing in morning
I try to exersize , walk , take vit D , algaecal, probiotic,
multi and veggie juices. I have other supplement I fit in when I remember..
Anyway Im encouraged by the news it shrunk the tumor..
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Personally I think chemo was a walk in the park (minus the hair loss) compared to Arimidex!
It may be that I’m a bit younger and was peri-menopausal and had my ovaries yanked then placed on Arimidex 2 weeks later. Ouch! Even my new oncologist I just brought on board winced at that! The estrogen drop is just off the charts in these scenarios!
One week Arimidex- free; what will it bring?
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I am having brain fog but cannot remember what does AI stand for?
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Iamnancy, aromatase inhibitors. I understand.
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I have just finished 5yrs taking of Arimidex have been clear of breast cancer for the 5yrs I didn't have CHEMO, only Radio, Have only a few symptoms stiff joints but the heated pool helped a lot , I am now told i can stop taking arimidex , but i do have the option just is a ? i need to think about as I didn't have any glands removed they said its ok to stop the medication. There seems to before and against coming off the medication .
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Ane5TT Thanks for sharing this update. If you decide to put your DX and TX in to be seen publicly (My Profile/Settings), we can see more information about what you've been through. I appreciate, very much, hearing about your good outcome.
I'm doing fine on my AI, and have adjusted to a few new body facts (stiffness, etc.). My body does get quite perturbed with me if I ever skip my daily hour of exercise.
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I have been taking generic anastrozole mfg by Teva since Sept 2017. I've been able to get the Teva from various CVS's but I think I've exhausted my supply and after a day of phone calls I can't find Teva anymore. Instead of trying another generic by a different company, I signed up today with Eagle Pharmacy to get Arimidex delivery. My question to those who have gone from generic to brand name- did you see a difference in side effects? Did they lessen / get worse? Just curious. I don't want to get another generic as I've done well on the Teva with the exception of joint pain, but anxious about the switch. Definitely don't want side effects to get worse with the brand name so wondering others experience. I'm nervous switching from the devil I know. Thanks for any insights!
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LeesaD - One of the ladies on this thread or another similar one (Coach Vicki) switched to the brand name and found it less troublesome than the generics.
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Leesa Walgreens by me has Teva brand! I’m in NJ right next to the City.
My experience switching from Teva to brand Arimidex was slightly better with side effects. Virtually the fillers, if you compare them, are the same.
I think you won’t have a problem. Good luck to you!!
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CeliaC and CBK- Thank You both so much! Fingers crossed 🤞
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leesa, Ive been taking Arimidex from Eagle since Oct 2017 my joints are achy in morning when I wake but after im moving Im ok I take pill first thing in morning
My only fear is the osteoporosis, if I recall you get prolia shots? Hows that going
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hey Coach,
Was wondering how your bones are doing?? Im verging on osteoporosis.. still trying not to take a bisphosphimates any advise ?? I see my onc for my 6 mo follow up this wee
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MamaOz I was diagnosed with osteopenia before starting AI, so my MO has me getting a Zometa infusion every 6 months. I've had just one so far-- #2 will be in May---it made me feel like the flu the next day, and after that, zero side effects. MO says it will counteract the bone deterioration associated with AI's.
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I too had osteopenia before so they started me on fosamax after the first few months. But I have developed full blown osteoporosis with 10% bone loss after six months of drugs. This may be the deal breaker for me. Hope the zometa works better for you hiking lady. Because of dental issues my dentist didn’t want me taking the infusions.
Just make sure and get your bone density rechecked sooner than later!
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bennybear thanks for this info and the cautions.... I will keep up on this. Yes, I've heard about dental problems. Ugh. Plenty of things for us to stay aware of and self-advocate about.
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MamaOz- thanks for the info. That’s how I feel now too on the generic so hoping it’s at least the same on the brand name. As far as Prolia.... I’ve had three shots so far. Before the one I just had in January my endocrinologist gave me a bone density test The results showed I went from osteopenia to osteoporosis in both hip and back. The results were compared to the bone density test I had before starting chemo back in May 2017. I started the anastrozole Sept 2017. So the anastrozole has definitely hurt the bone density and the Prolia so far has certainly not prevented it. My endo says the Prolia should stop the bone loss but the test results have not shown that yet. Will see what happens when I see him in July for next shot. I am starting to notice some issues with my mouth. Teeth in particular. I feel like my bite has shifted and it’s new. Like when I bite down my bottom and top teeth don’t line up anymore. Not sure if it has anything to do with the Prolia but I’ll discuss with my dentist in a couple of weeks when I see him and see what he thinks. So not really sure if Prolia is doing it’s job or I just have to give it some more time. How are you doing? Hope all well! Can’t believe it’s been a couple of years now since this all started.0
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Hello, Friends! I am just starting Arimidex (started last Monday), and it is probably too early for side effects, but I have had none so far. The plan is for me to also have infusions of Reclast every 6 months for 3 years, since I am osteopenic, and also Reclast has be shown in recent studies to prevent recurrence. Though my stage of cancer was fairly early (borderline 1A/2A), my grade was intermediate, as was the result of my genome test. With surgery, chemo, radiation, Arimidex and Reclast, the doctor thinks she can achieve a 90 percent level of long-term recovery. I am nervous about the possible side effects of both Armidex (bone density) and Reclast (possible jaw/teeth problems). I am 64, and was in great health before BC was diagnosed in early September. Chemo was terrible for me, and I am glad there were only 4 treatments; radiation was apiece of cake. We'll see what this stage is like!
Best to all!
Edith Mary
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