Topic: For Arimidex (Anastrozole) users, new, past, and ongoing

Sep 7, 2020 02:51PM - edited Sep 7, 2020 02:53PM by flashlight

Hi Flowerlover2020, I know what you mean I just turned 69 in May. I am on Tamoxifen because of osteoporosis. In the past I was on Fosamax for 3 -years. The Tamoxifen has its own set of side effects because of that I only took half a dose for awhile. I took gabapentin 100mg at night and that seemed to help reduce the night sweats. I changed my MO and she wants me to go on Boniva monthly and switch to Anastrozole. I'm not sure I want to do that. I now take 10mg of Tamoxifen in the AM and 10mg in the PM and that seems to be working for me. I also take magnesium for the leg cramps and fish oil for the dry eyes. Right now it is the insomnia side effect. So far I'm dealing with it, but it is always in the back of my mind to quit. You can give it a try and see how you do. Good luck to you!

Sep 7, 2020 03:07PM mysticalcity wrote:

Wondering if anyone on anastrozole for a longer period of time has developed Entropion (your eyelid turns inward so that your eyelashes and skin rub against the eye surface--generally it is the lower eyelid) . I was recently diagnosed with this and at first my MO said it was not from the anastrozole. . but then as she was talking about things that can cause the Entropian said "things that can factor into Entropian are things like dry eyes" . . you could see she was rethinking that. . . Then she said she has not heard of it as a side effect before, but said there might be a possibility the anastrozole played a part because it dries everything out. . . has anyone on anastrozole ever been diagnosed with that? I've been on it for 2 years and 3 months at this point.

Sep 7, 2020 04:50PM PinkLonghorn wrote:

Hi Flowerlover2020! I was 55 when I got BC diagnosis. Had lumpectomy, chemo, & radiation. Started anastrozole in April 2014. I've always taken vitamins & supplements & have continued to do so., some of which hopefully mitigate some of the side effects. I've had side effects, but nothing that I haven't been able to manage, sometimes with help: hot flashes at night, moodiness/anxiety/depression (started bupropion in 2018 and it made a HUGE difference!), dry eyes (were dry B4 anastrozole b/c of blephorospasms [eye lid spasms] & got Botox shots to stop the spams [lasted 9-12 months]; haven't gotten Botox in several years; use couple of Systane products every day), bone/joint stiffness (yoga, exercise, & massages help), fatigue, weigh gain, insomnia (was already taking 5 mg zolpidem & continue to do so). My oesteopenia was very slight & hasn't changed. My cholesterol is slightly elevated from before BC, and I continue to take Red Yeast Rice/CoQ10 to help keep it lower. At the 5 year mark, my Dr wanted me to take it for another 5 years, and I only agreed to take it for 2 more. I will re-evaluate in April. So far, I've chosen to tolerate my SEs and get help for them, where I can. I probably will not continue anastrozole, once I hit the 7 year mark next April.

I agree with some of the other posts, and encourage you to try it. Because we are all different, this med will affect each us differently. Each of us needs to weight the degree of SEs versus quality of life.This forum has been very helpful to me, so I'm glad you found it!

Sep 7, 2020 04:58PM Flowerlover2020 wrote:

Thank you Pink Longhorn. It sounds like you have been on this med for a long time so it’s comforting to hear that the side effects can be managed. My MO didn’t tell me about side effects when we discussed my taking it so I was pretty surprised when I started reading blogs about all the negative ones. I’m feeling a little better now about at least giving it a try. I sure don’t want the BC back! I am also glad I found this forum

Sep 7, 2020 05:02PM PinkLonghorn wrote:

Shame on your Dr for not mentioning side effects! I've been blessed by a Dr who gives me all the details and works with me on what I choose to do. Let us know how you do!

Sep 8, 2020 03:15PM Flowerlover2020 wrote:

flashlight, thank you so much for including that link. Its so incredibly helpful! I hadn’t seen that before and it clearly shows how the side effects of all the drug therapy’s compare. It really does look like Anastrozole has the least amount of side effects of them all. Of course it also depends on everyone’s own interaction with them. I have decided to try the Anastrozole. I took it today. I really appreciate yours, and everyone’s help with this decision.

Sep 8, 2020 11:35PM SeeQ wrote:

Darlene63, I'm pretty new to the site, and it took a little while to get used to the long, and sometimes really old threads. I found if I saw a thread that looked interesting, I'd read the at least first few responses, and then - if it was a really long thread go to the last page (and maybe back up a few pages from there). You'll see some topics that you want to go further back, because there's good experience or information there.

I'm sorry I can't answer your question about the armada - I just don't have the experience. I've been on the arimidex for about two months now, and it seems like the hot flashes might be slowing down during the day. I still have waves of them in the evening after dinner, and a major hot flash at about 3:30 almost every morning. My MO suggested he could put me on Effexor (I think?) if I wanted, but I'm going to try to wait it out a few months and see if it's just an adjustment period. I'm hoping the cooler weather that is around the corner will help. It can't hurt.

There are some really nice ladies here who truly care about each other and offer support and share information. You'll like it here. It's not the club we wanted to be in, is it?

Sep 9, 2020 10:49PM PontiacPeggy wrote:

CeliaC, thank you for letting me know that I was able to help you. It really makes me feel good. I think it I helpful to know that for many of us AIs are quite doable. Sometimes it is hard to see that forest for the trees. Having BC is such a negative that it is hard to see anything but negatives with our treatment choices.

I'm so glad you are doing well!

HUGS!

Sep 10, 2020 06:24AM Dreamhome wrote:

I'm so glad to have found this site and this forum. All of this is new to me and overwhelming so it really helps to hear from women who are willing to share their experiences.My lumpectomy surgery is scheduled for September 22. If my lymph nodes are clear and the chemo test doesn't indicate otherwise the only treatment I will have is hormone therapy (the absolutely best I could hope for!). No radiation is recommended as of now because of my age (72). I wasn't warm and fuzzy about my first oncologist so got a second opinion (the second doctor is awesome and will be my choice going forward). One doctor recommended Letrozole and the other Arimidex, but indicated that all the aromatase inhibitors are basically the same. I would like to know if anyone has tried both and had better luck with one. When I read about the side effects, it is scary. I've always been strong and healthy and optimistic so I plan to do everything I can to manage any side effects. Any tips or encouragement would be appreciated. Best wishes to all of you.

Sep 14, 2020 12:49PM BlueGirlRedState wrote:

Flowerlover - not everyone gets SEs and there is a wide spectrum of SEs for those who do get them. If one generic does not work, you might try another or even brand name. You might want to see if Tamoxifen is an option (also has SEs). You might be told that generics are the same and the same as brand name, but they are not. Friends on very different drugs tell me the same thing. The first time I tried generic AI, SE immediate with joint stiffness and trigger fingers in both hands. Took a break, then switched to Tamoxifen. I am now taking brand name Arimidex. SEs not as bad as generic, but there. Hoping the next bone scan does not show any worsening. Does anyone know why the same machine needs to be used for an acurate comparison of bone scans ? Oncologist tried to explain, but it did not make sense. I buy brand name directly, Insurance would chage 5x as much, I pay $2/day. https://www.eaglepharmacy.com/drug/arimidex

Sep 21, 2020 06:28PM msbail wrote:

Hi, I read your post with interest. I am 72 and have my first appointment with my MO October 1. I am scared of side effects. Surgeon mentioned anaszastrole several months ago. I think that is the preferred for lobular. Five years is a long time to commit to this drug. Please tell me about yourself and what you have decided to do as far as the AI is concerned. Thanks.

Mary Baile

Sep 21, 2020 07:20PM PontiacPeggy wrote:

Hi MSBail, glad you found this forum. I had few problems with anastrozole. I took it for 5 years, starting at age 69 and finished a year ago in October. I'm now 75.

My path has been unusual since I started everything in Michigan in the summer of 2014. I did my surgery, radiation and started my anastrozole there. My MO was okay. Then in June 2016 I moved to Spokane, Washington, and found a new MO whom I absolutely adore and trust 100%.

While I was on anastrozole, I did take Fosamax for the entire 5 years. I started with mild osteopenia and ended up with it the same. I don't tolerate calcium so didn't take that. Only supplements I took (and still take) are vitamin D3 and folic acid. I did add regular Claritin after a few months because that seems to help with the normal aches and pains we get as we age and anastrozole makes them a bit worse (and truly never bad, just annoying when I'd get up). I used the Teva manufactured anastrozole for most of the time I took it. Then it became unavailable. I didn't have trouble with any of the other manufacturers product (which rather surprised me). Some women do find that they can't tolerate the generics but have no problem with the brand name Arimidex and I gather there are ways to get it more affordably.

I did not have any positive nodes so what my MO recommended for me might be different than for you. But he said 5 years was all that was indicated with my age and diagnosis. I even talked with the practice's breast surgeon (who is crackerjack) and she said the same. They also said, quit the Fosamax, too.

So October 17, 2019, I stopped everything the anastrozole and Fosamax. Also the Claritin.

I did not change my diet. I didn't change my drinking habits (a glass of wine with dinner most nights). I am horrible about exercising and nothing changed that. I have continued taking vitamin D3 and folic acid and I am taking biotin. I was losing my hair (hereditary) before BC and nothing has changed,thus the biotin which works wonders for my nails, not so much for my hair.

Some women don't tolerate one of the AIs and try the other 2. Usually one will be a good fit for them. So if anastrozole and you aren't compatible try one of the others.

I took my anastrozole in the morning before breakfast. I had read that for some people it kept them awake at night if they took it then. I never noticed ANY problem with sleeping any time, so it wasn't an issue for me. I didn't take any meds for anxiety or depression though things were terribly stressful for the 4 years before I was diagnosed with my husband's terrible medical problems and me being his sole caretaker (read: NO SLEEP). He died in 2015. I downsized the house, got it ready and sold it and moved to Spokane 9 months after he died.

Don't anticipate problems taking anastrozole. Many of us have no trouble or it is so minor that it's not worth mentioning. It's a great way to help keep BC from returning and that is worthwhile. If you do have trouble, then see what other choices you have.

Give it a shot. You have nothing to lose and can gain some peace of mind which is worth a lot. Good luck!

HUGS!

Sep 24, 2020 11:09AM PontiacPeggy wrote:

MSBail, I'm so sorry about your loss. It is definitely hard. Not sure I'm brave but I was determined to be near one of my sons. I saw how difficult it was for them when their father was on his last days and the hoops they had to jump through to come visit him. I didn't want that to happen when my time comes.

I'm no fan of winter but I've been coping with it for 75 years so I can manage more. Gee, Hawaii sounds good! I think winter is a small price to pay to be near my son. Wish San Diego was more affordable, however. We all have to decide what is most important to us and then forge ahead and not look back. For me, the move has been terrific.

I totally understand your dilemma on your house. I did not do any re-modeling when I sold my house. I had some work to do to make sure it would pass inspection and did that. But essentially as is. It was an old house but most things had been updated that needed to be like electrical, furnace fairly new, etc. I also took a hit but I was determined to move and was willing to do whatever it took to make it happen.

I never felt my treatments were onerous. Just another thing to get through, especially that last year with my husband when I was diagnosed and had surgery and radiation. Taking anastrozole wasn't a problem. Just another pill to add to my allergy meds, Pepcid, etc. And most of the time I didn't think about "why" I was taking it. It just was. I did what I had to do and concentrated on everything else that needed to be done.

I'm so glad you enjoy my posts. I hope that people realize that taking anastrozole does not have to be a challenge.

Good luck!

HUGS!

Sep 30, 2020 10:36PM - edited Oct 2, 2020 11:10AM by SeeQ

Humblepeace, those sound like they could be carpal tunnel symptoms. Do you wear a wrist brace? Do you wear it at night? My symptoms (numbness/tingling in arms) got better when I started wearing wrist braces to bed. Eventually, I learned to keep my wrists straight when sleeping, and I don't wear the braces anymore.

Oct 2, 2020 01:36PM AnnC2019 wrote:

Hi,

Does anyone take the generic Anastrozole distributed by Zydus and manufactured in India by Cadilla Healthcare? If you do, you might want to read the recent FDA warning letters for this company. They don't specifically reference Anastrozole but the whole manufacturing facility. I just picked up a 90 day supply before I read the warning letter. I want to switch to Arimidex now. Has anyone had insurance issues related to getting the brand?

Here is the link to their warning letter from the FDA:

https://www.fda.gov/inspections-compliance-enforcement-and-criminal-investigations/warning-letters/cadila-healthcare-limited-584856-10292019