For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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GinaMarie—-
My oncologist strongly recommended I not go on Tamoxifen due to the increased risk of clots, since I had developed a pulmonary embolism during chemo and am now also on Eliquis. His recommendation for me was ovary removal surgery followed by Armidex. For my situation it was definitely the right choice, (especially after the pathology of the removed Fallopian tubes showed a precancerous lesion that no one was expecting to find there. Good news is I healed quickly and have had no significant side effects with the Armidex.0 -
Great tips. Thank you! B.
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Hello Everyone,
I finished my radiation and just started Arimidex 2 weeks ago. Besides minor stomach upset my only other side effects have been hip and neck pain. My neck aches constantly and my hip only at night when I am in bed. Everything I've read says joint pain doesn't usually set in from the medication for a few months so I am worried..of course. I have to stay off doctor google who tells me my cancer may have gone to my bones. Has anyone else had joint pain immediately after starting? What has your medical oncologist recommended?
Thanks
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Paulinke - I started with letrozole and switched to anastrozole after 6 months. I started to have aches and pains shortly after starting letrozole. I have found that keeping active helps. I walk 2 miles every day and try to do stretching that my physical therapist gave me. I’ve had my trigger finger and hip injected and have had PT for lower back issues. I see my orthopedic doctor Friday and will discuss some recent shoulder pain. I figure this is my new normal, so I’m getting use to it. Usually I the orthopedic doctor orders an X-ray or MRI and it eases my mind. My oncologist would order MRI while I was in active treatment or refer me to the appropriate physician, but now that I’m done with treatment I either follow up with my primary care doctor or see my orthopedic doctor.
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As someone who already has baseline joint arthritis I cannot imagine joint pain being any worse on these drugs. I will be starting Letrozole in about a month. I applaud all of you who kept up with exercise during infusions. I am still on Herceptin and feel no great enthusiasm to try to exercise. Never was like this at the beginning of this year. Had an active job running around.
I am making my yearly retinal appointment soon for a checkup as all these drugs are known for retinal traction issues. More problematic (per MDs) is Tamoxifen. I will give the AI a try when the time comes and see what happens. I am older and QOL is more important than not being able to function while living alone.
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After starting anastrozole (Accord brand), I immediately had trigger finger, hip, knees and back pain; I felt like I had aged 30 years. Someone on this site recommended Teva brand anastrozole; I changed to Teva brand and have not had a problem. Yoga and walking also help with the stiffness. I take a 24 hr Claritan everyday and drink Honey Chai Tumeric tea by Yogi. Keep trying new things until you find what works for you. AI's are doable. Goo!d luck
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Racheldog - I wasn’t able to exercise during TCHP, but gradually started once I started to regain strength after my mastectomy and starting just HP. I also developed neuropathy in my feet and walking seems to help alleviate some of the discomfort associated with the neuropathy pain. I started slow and worked up tothe two miles.
Didn’t know about eye issues and AIs. Just had a visual field exam this morning and setup my annual eye exam.
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Hi NsBrown. I already have both a family history and my own history of retinal tears that required laser photocoagulation. So I am acutely aware of those AI issues more so than other folks on here. I emailed both retinal docs and it seems to be Tamoxifen that can cause more maculopathy per them. But I really will ask more when I go in for my annual eye exam next month.
My vision sure seems different after being on all these treatments and I have held off on new glasses until things settle out. Thanks for the encouragement about the exercise. I hope to get back to at least doing my stationery bike! Slowly have slipped back in vitamins again. Herceptin is kicking my butt this time with fatigue. I am glad I opted for doing each modality separate. Not concurrently but sequentially.
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I've been on Arimidex for 7 years, and will be on it for another 3. I have not had any adverse reaction, except my PCP mentioned that my cholesterol was up. I have never had high cholesterol. This is a new doctor who did a detailed blood panel, so I'm not sure I have been tested for cholesterol since my diagnosis. Anyone have issues with that?
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Yep, that is another SE (hypercholesteremia) that is definitely in the columns and literature about the AI drugs.
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HomeMom: Before starting on an AI, my cholesterol was already high (like 220-230) but every time I asked my PCP about maybe starting on a statin he always said it wasn’t necessary. My LDL was low, the ration of HDL to LDL was good, I had no other factors that would put me at risk for heart issues etc. Then I had my latest labs done for my MO (who added in a test for cholesterol because she knows it bothers me ) and it was 272. My PCP called 2 days later - “I guess we’d better get that statin started”, he says. My blood pressure is going up too. The joys of AIs.
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JanieHS - My BP is up too. It's been a little elevated the last two years 157over 90 ish. and she never said anything. Last time I was there it was 177 over 120. She came in and said 'What's up with your blood pressure?!" She has never said that the AI can contribute to that. So at the PCP he took it twice, once when I got there and once when it was time to leave. It went from 160 over 120 to 140 over 90. He was going to put me on BP meds until he took the second one. I am taking my BP whenever I can and am at rest to track it for him. I don't know what to think anymore. Plus he has me getting blood work again and coming back in 3 months.
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I just started Anastrozole and didn't know it was a generic for Armidex! Does it make you drowsy? Do you take it in the morning or evening? I find that it makes me a little tired. Maybe I have to get used to it? Thanks in Advance!
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Hi Jibber - I take the generic and haven’t had any drowsiness from it. I take it with my dinner. I’ve been on it 3+ months
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HI Jibber, I take anastrozole in the morning with breakfast and haven't had any drowsiness. Been taking it for 3.5 years.
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Hi Jibber, I take anastrazole at night before bed, just easier for me to remember it. I’ve been taking it for 3.5 years.
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High colesterole is one of the side effects for Anastrozole that I had read. I'm not to happy about that, cause it can cause heart issues!
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I am going to try it at dinner this time and see how I feel. Thanks!
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Thanks for your feedback!
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Thanks for your feedback!
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Hello - I just started on Arimdex 5 days ago - no major aches or pains - but staying awake is a challenge!! Sheesh! I think I will switch to taking it at night too... put this drowziness to better use!
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I like reading all the post they are helpful. I will complete radiation Tuesday and start Arimidex I hope it works. It’s all still scary info nice to hear from others on the same thing
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LadyGwendolyn and Bunnybr, sorry you have to be here, but welcome to Breastcancer.org! We are here to help you navigate your way around, find support and get the information that will help you along the way. We're looking forward to hearing more from you soon. Please, keep us posted on what we can do to be a help to you.
Warm wishes,
From the Mods
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Feeling the need to vent and I know you ladies will understand. I apologize in advance. I've been on Anastrozole for almost a year now and while it hasn't been pleasant, my side effects seem to come and go in waves. Some weeks I can barely climb the stairs, others I can easily put 15000 steps a day on my Fitbit with daily walks and exercise. Some days the hot flashes are hideous and then they disappear for a couple of weeks. The one consistent thing is my insomnia. It has been absolutely terrible since the start of the meds and I had planned to speak with my oncologist about it at our next visit, but then something strange happened about a month ago. I started sleeping a LOT. I can't make it through the day without at least one or two naps and I am sleeping a solid 8-10 hours a night! My headaches have also increased in intensity and my vision is just off. It actually has me quite worried as I know my body and this is not normal for me. So today at my appointment (the first one I've had with her since January), my oncologist says "of course you are tired, you have cancer and you have had multiple surgeries, chemo, radiation, etc." and not to worry. If it continues for another 3 or 4 months, we'll do some labs. Really?? I"ve been out of "active" treatment for almost a year now. I should be happy, but I honestly feel like something is wrong and I guess I had just hoped she would take me seriously!! She also decided that I no longer need MRI of the breast area since I had the second mastectomy, but my last MRI was "inconclusive" as the metal in my tissue expander blocked them from getting an accurate view. I was looking forward to having a clear one to ease my mind in March. I'm feeling very frustrated with her at the moment and just needed to speak to an audience that gets it....lol.
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Sabby, I'm so sorry... If you keep having these issues, I'd keep bugging your MO. You know your body better than anyone. Maybe keep a journal or diary of how you're feeling, etc., and let your MO know. Be pushy. Sure, you've recently finished treatment, but things like headaches can be especially concerning.
Keep after it.
Carol
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Sabby - talk with your MO and get them to understand that the headaches and vision issues are new. Keeping a journal is a good idea, to see frequency/intenstity/when, maybe if anything is triggering. Don't let them dismiss it.
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Sabby, If I were in your situation, I'd be discussing the vision problems, headaches, and tiredness with my PCP as a starting point. These could be manifestations of some other issue unrelated to cancer, and your PCP is probably better positioned to guide you towards understanding/resolving these changes than is your specialist MO. You are absolutely right to take action - you know your own body, you know when changes are significant, and if the MO isn't being useful in this particular situation, then work with a doctor who is able to take a whole body approach to helping you.
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Thank you for the support ladies! I forgot to mention that she suggested maybe I was just depressed and should join a support group...
I do intend to speak with a general practitioner about this and I have already made an appointment with an ophthalmologist. I also sent an email to my endocrinologist yesterday to see if perhaps he'll run my labs as it could possibly be a thyroid complication, though my numbers were perfect in June. Anyway, I have every intention of figuring this out. I waited too long for that second opinion on the lump I found in my breast two years ago and by the time I finally went to another doctor nine months later, I had lymphovascular invasion and 4 positive nodes. I'm not messing around with my health anymore! I appreciate the suggestions and really value having a forum like this to find understanding support
. Wishing you all the best! Cheers,
Sabrina
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Sabrina you can also request a different drug. If this isn’t working for you, and to me it doesn’t sound good, ask to try a different one. I had the insomnia but it disappeared 3-4 months in. Some MO’swill also tell you to take a break of 2 weeks or so off of the drug. Then you’d know for sure if it’s the drug or something else. HUGS to you, wishing you the best.
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It’s still very early days…(started Arimidex on Sept 16). But so far, ok. Definitely stiffer and sluggier but I just have to move … lift my arms, roll shoulders, extend legs… basically get the blood going, and the fatigue/urge to nap recedes. Fortunately I’ve got a lot of things to keep me moving/up and about. Will resort to ‘reading’ via audiobooks. I love walking while listening 😊. Stephen Fry apparently lost 14 (?) stone via heading out on long walks and listening to audiobooks. !
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