For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hi apatient, I don't have any positive effects, but in my case, the negatives are very mild. I have two suggestions,
1. Start taking generic claritin soon so it's in your system when you start arimidex.
2. Stay on top of any side effects and let your doctor know. I had peripheral neuropathy flare up but it wasn't a side effect and there is tx for it.
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apatient I hear you! I was super nervous, too, and it's different for everyone. In my case, this medication is hugely important to my treatment plan, so I'm committed to it. It will reduce my recurrence risk by 50%.
I am very encouraged by the thread (on this forum) called "Doing Well on Aromatase Inhibitors," where people share their positive stories: https://community.breastcancer.org/forum/78/topics...
About 10 days after starting, I started having extreme fatigue. It is a bit better 4 days later. Because of the daytime sleepiness, I switched to taking the pill at night. I'm sleeping quite well, as a result, and I'm feeling a little less daytime fatigue. I realize that other side effects will probably arise. My oncologist has an RN who is my direct contact to ask for help to manage side effects, so I feel well supported. My doctor and this triage RN have said side effects often recede in a few days or a few months. This means staying patient while our bodies adjust, I guess! My MO also promises that there are other ways to manage the challenges, such as 2-week "vacations" from Anastrozole to "re-set" my body's responses, or switching to another AI if need be, so my doctor is committed to helping me manage staying on this important medication.
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Apatient, when I started anastrozole 4 years ago I didn't anticipate any problems but I did ask my then-MO what we'd do about them. He said we'd handle them if they cropped up. They haven't. I don't have any problems that can be attributed to anastrozole. I was losing hair and creaky prior to taking it and I still am. Don't anticipate problems that may never happen. If they do, then you'll find plenty of suggestions here to help. I am a firm believer in generic REGULAR Claritin for stiffness. It really helps. I had tried it off and on over the years for my allergies and it didn't work. My PCP said I can take Claritin and Benedryl (which does work on my allergies) since they are totally different. So I do. I did notice a difference when I stopped the Claritin. Hopefully you'll be like many of us and not have any problems.
HUGS!
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Point well taken...until I started reading this blog, I didn't recognize any SEs. I'm 75 (in a few weeks) and feel all the natural aches & pains of aging and credited all to my age. Now, I see that many are also SEs for the Anastrozole that I started in early September. I think reading this blog may have influenced how I assign those multiple issues and, perhaps, that "ain't good"? The one SE that is very clearly identifiable as an AI SE is HOT FLASHES! Frequent and miserable...but, I'm very lucky that they don't interrupt my sleep. For the rest...well, chalk it up to age.
Am scheduled to begin phase II Verzenio trial in the next few weeks. It will be interesting to see if more SEs pile on?
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Thrdage, it would be very helpful if you would fill out your profile and make it PUBLIC (that's a separate step and tab). Then all the information about your diagnosis and treatments would be right there. We rely on that when we make suggestions.
I haven't had hot flashes with anastrozole. I barely had them when I went through menopause. I'm sorry that you are having them.
What is the Verzenio trial you are doing?
HUGS!
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Hmmm, I thought I had posted my info...but I see that I didn't. Will correct.
Verzenio has been approved for individuals with metastatic BC; so Phase 3 is testing "high risk, node positive, early stage, hormone receptor positive, HER2 negative" BC women to see if it is helpful in reducing recurrences. I start the 5-yr. trial after a battery of (additional) tests--Bone Scan, CAT Scan, ECG on 12/7. The trial doesn't pay participants but will cover expenses that are generated by trial participation. I'm single without dependents, so I figured--what the hell, why not? If it helps anyone in the future, I'm game.
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Thrdage - Thank you! I've thought a lot about whether I would be willing to do a clinical trial and am not certain I would/could. So thank you thinking of those who follow us.
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Apatient-I have been on Arimidex for about 4 months and have not noticed any side effects, except occasional hot flash here and there. Good luck
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apatient - Some suggestions for starting out with Anastrozole. I stopped taking it after several months because of SEs. Several months I started tamoxefen. Suggestions
1) Keep a daily log of how you are feeling, good or bad. When you feel this, changes in diet, sleep, exercise, including supplements. If you experience SEs, what/when where. This will help you talk more intelligently with your DR, as well as helping you to identify any issues. I wish I were doing this rather than relying on memory. For example, for me, I think a sudden increase in the amount of meat I was eating seemed to aggravate SEs, but since I was not tracking diet, I'm not sure. I think turmeric helps, both supplements and added to food helps, but i'm not sure.
2) SEs really vary, some people do not seem to have any, while others have multiple and severe SEs. Some things that seemed to help one person, do not help another. For example, for me CBD or CBD/THC did not seem to help with sleep or joint stiffness, others report it really helped. Several people on this forum report that switching the generic or switching to the brand name helped.
3) Surfing for info can really be time consuming, and sometimes it is not always clear what is valuable and what it bogus information. You can fill your brain to the point where it explodes. Be sure to stay active and do something you enjoy every day.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. ALso often add turmeric to meals. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine
2009 ER+ left breast. 52 yrs. Lumpectomy, 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. 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.
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BlueGirlRedState-
I second you on the Turmeric, but there seems to be some conflict out there whether it’s safe for ER + ladies. I really wish I could get some clarity on this. The GAIA supplement you are on is effective.
Does anyone have input??
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My MO was totally ok with me taking turmeric. I also took the Gaia brand which worked great!
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I know I complained about not getting the TEVA brand, but after another week the side effects on Accord seem to be gone, too.
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Snickers mom- and I am Snickers mom as well- my parents live in the Villages full time. Have fun!
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tnd22 - let me know next time you come down to visit your parents! It would be fun to meet.
Ann
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Well, looks like the Teva anastrozole shortage has hit Spokane too. My Walgreen's said it would be the end of December before it comes in. So I'm filling with Apotek anastrozole and hoping the fillers are innocuous. I have had no trouble with Teva's.
HUGS!
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good to know about the Teva shortage. I got Teva in Aug and Accord in Nov. I’ll run out of the Teva in a few days. Hoping nothing changes.
apatient- I was on tamoxifen, then had hysterectomy including ovaries and switched to Femara. Saw MO in July and he switched me to arimidex/anastrozole. The joint pain, muscle pain, fatigue, memory issues, brain fog, and hot flashes are MUCH improved and definitely tolerable. So I would say I’m doing very well on it.
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Interestingly enough, I tried the Teva brand because of so many people here preferring it, and had much more severe aches and pains. I am satisfied with my Accord brand. Good luck to all in finding the pill with the least side effects.
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DWiseley, HikingLady, PontiacPegg, Lula73, rwns, BlueGirlRed—
Thank you so much for sharing your experiences and advice. I appreciate it so much. I feel a lot less nervous now!
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Hi there, I've been on the hunt for TEVA Tamoxifen as well. Here's what I found out. I called MAYNE, they produce TEVA'S Tamox.
NDC 51862-0446-01 ( the 01 is the number of pills...I was told, that's for 90/20mg) BUT, they distribute another formula from ACTIVIS, these companies are all intertwined. And that formula is the one that most pharmacies have been sending out. It must cost them less etc... I am in the Northeast and the Mayne uses the following wholesalers to supply pharmacies. McKesson supplies Walgreens/Rite Aid and probably lots of others. They were able to order the TEVA Tamox for me. The other wholesalers supplying pharmacies according to MAYNE, are as follows:
In the NDC the four digits 0446 should be the same if it's TEVA. If there is a change in formulation, additives etc, it will be reflected in a change in those four digits.
Cardinal, Kaiser, Amerisource, Berger and Dogsmith... apologies for misspellings etc.. she was talking fast:/
I hope this was helpful, best of luck everyone.
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Hello Ladies,
Just started anastrozole last week. Yesterday, my lower jaw, back teeth started hurting and very sensitive. Mostly on the bottom left but occasionally, the right side, but then goes away. At times the pain goes away but it comes back. I was wondering if this is an atypical side effect? Anyone? Thanks for any input.
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Hi Julesm59
I'm not sure whether anything is typical! I have been on anastrozole since april, 2018. I haven't noticed anything except one day out of the blue my knee was just unbearably painful. I have had 3 surgeries on that knee and have arthritis but it never bothers me. But this was unbearable and came on so suddenly. My orthopede gave me a cortisone shot which immediately calmed it down. The oncologist confirmed that it can come on that suddenly and can affect just one area/joint. This is such a strange side effect! Not sure if it was the meds, but we will see when the shot wears off. I hadn't tweaked the knee or anything, so I'm not sure what to expect.
So with regard to your side effect, it seems like anything could be possible in terms of bone/join pain....
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Thanks MMRD,
The knee pain has to be terrible. That is unusual that would happen, I'm glad the steroid shot help though...The most unusual thing about the jaw pain is that where it is at, I have two teeth that have had root canals and are capped. Really shouldn't be feeling pain. I guess I will call the dentist tomorrow. He is a sweetheart and if he knows anything will be happy to advise. If not then I will call the onocologist or nurse for assistance. I have never had pain such as this except my heels. Which I have had pain in for two years. When the onco told me the side effects of the medication, I basically stated, oh, I already have pain there and there and also there. She just shook her head. I do know pain. Thanks for responding.
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Julesm59- in my non medical opinion, LOL, you might have some sinus issue coming on. Often when I'm getting a sinus infection, my teeth will ache. Hoping whatever it is, it stops for you soon.
TEVA anestrozole: I called a different CVS, low & behold they had it. I got a vacation override to pick it up. Now I'm set for about 40+ days and will deal with next refill in FL, and hope for the best.
Onward!
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Julesm59 - I had dental problems after 1 year on anastrozole - had 4 root canals in 6 months! MO said there is no connection, but it seemed highly unusual to me. Everything is stable once again. In any event, your dentist should be able to sort this out. Good luck!
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Would like to thank you all ,I got my armidex brand name from Eagle pharmacy for $30 .. so far no side effects or anything unusual to tell . whish you all good health and happiness .
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I've been on Arimidex for 1 1/2 years, and what was a slight neuropathy in my feet has suddenly gotten more severe and spread all the way up my legs, numbing and weakening them. I had surgery and radiation for a stage 1b aggressive tumor but never took the chemo drugs known for causing neuropathy. So far my neurologist doesn't know if this neuropathy is caused by metastasis, paraneoplastic syndrome or something else. Has anyone else experienced this?
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Hi Mstein1970
I would go off the Arimidex for a few days or more, to see if your symptoms subside. I had such pain in my left hip, femur bone pain plus generalized aches that I felt like I was 95 years old. I have been on Arimidex for almost two years. I have been off of it for a week, I could not take the discomfort any more, I am 95% better since I have been off it! I don't know what I am going to do, it feels so good to feel good again in so many ways. I plan to talk to my MO. I did have a lot of foot pain as well.
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Mstein., I had chemo 3 years ago for colon cancer which caused neuropathy. It got slightly better over the last few years until this dx and tx. I started having terrible angry bees like pain in my fingers which worsened in the cold. It was as bad as it was on oxalaplatin. I even felt like frozen knives were in my fingers. All of this occurred soon after my surgery, right when I started taking Anastrazole. I spoke to my MO about it and he looked up the side effects of this drug and said it doesn't cause neuropathy, but it can cause something else that I can't remember, but it can trigger neuropathy. He prescribed gabapentin which is working well.
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Dwiseley...just want to add that I have read several posts about aromatase inhibitors causing neuropathy. I don't know if its a proven side effect but I would definitely stop it for awhile to see if it helps. Good luck and keep us posted.
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Hi All -
It has been a while since the last I posted. I am back again because unfortunately I may have developed some difficulties with Anastrozole that I have been taken since last Feb. It has taken me a while to convince my clinicians that it is this newer medication that could be behind my difficulties. Anyhow, long story short - I have stopped taking this medication with permission since last Friday's dose. How long do you think it would take for the medication to clear my system. I was one it for just about 9 months. I have appointments with my PCP, and dermatologist this week as well.
MarieBernice6234
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