Quitting Arimidex after 10 weeks

I know it sucks and you're tired.There are other AI's to try. It took about 5 months for me to get the dosage right/tolerable. I tried all the extra cr*p prescriptions for hot flashes, too. Did you try a muscle relaxant so you can rest? Sleep is very important. Try to stay on the AI. It's very important part of post-treatment. You're in charge of your treatment. Hang in there.

I know this will sound crazy but trying a different brand as well. The drug is the same but the fillers are what are quite often causing all the pain. I was on tamoxifen, horrible. Tried a different brand of it, almost zero SE's for close to 6 years. Same with letrozole, on the generic I was crippled. My MO suggested I try the name brand Femera, it was life changing. I was on it for almost 3 years with very few SE's.

Hi everyone...all good answers. Switching to another brand or different drug might help. Working with your MO to find a solution is a good idea. That being said I completely agree with the original poster that if BC was a male dominated disease we would be much further along in finding better treatment options and maybe even a cure!

Debal- my issue with arimidex was fatigue- full body. I was convinced that my thyroid had stopped working (my mother and both sisters have underactive thyroids). My PCP humored me and ran all the thyroid tests and i saw an endocrinologist. 100% normal. I realized that the symptoms came on about the same time I started arimidex. Took two weeks off and felt better almost immediately. So we switched to aromasin. As mentioned before my only side effect was insomnia which went away when I changed the time of day i take the pill.

There really is hope for fewer/less severe/no side effects by switching brands and/or switching AIs. The different AIs (letrozole, arimidex, aromasin) all do the same primary thing - they inhibit the aromasin from converting androgens releases by the adrenal glands to estrogen. The difference maker and why docs will switch from one to another is that while they all do the same thing, each one is a different molecule which inhibits the aromasin in a different way than the others. That’s where the differences in side effects come in to play, and why switching from one to another can produce different side effects/severity of side effects. With that being said, most docs would prefer that you stay in the AI for 3 months to allow it to reach steady state in your blood stream and for your body to acclimate itself to it. When switching from one to another docs generally want you to stop taking it for 2 weeks before starting the new one to allow for the body to completely clear the previous AI. I started on letrozole and side effects were better than tamoxifen but still present: lots and lots of hot flashes, fatigue, joint pain, achiness, brain fog, fatigue. MO switched me to arimidex and WOW! What a difference. Just a few hot flashes per day, no more joint pain or achiness, reduced brain fog and fatigue. Much more tolerable and provided it stays that way I can definitely see taking it for 10 years no problem.

It sounds crazy to hear that a medication made by different manufacturers can have significantly different effects. After all, the pharmacy is always pushing generics and they claim they’re all comparable to one another as well as the original brand name med. The truth is that the generic manufacturer versioncan have up to a 20% variance in efficacy (20% more effective or 20% less effective) than the original name brand. This variance is considered acceptable by the FDA. In the real world, this variance can increase/decrease side effects as well as efficacy in each of us as an individual. In addition, each manufacturer uses different buffers/fillers as well which can cause side effects on their own. Many ladies do very well on the Teva brand of the anti-hormonals as they use the least fillers. I had Teva arimidex the first 3 months with no joint pain, very few hot flashes, no brain fog - just issues finding the next word sometimes. Then the pharmacy refilled with Accord brand. On Accord I had lots of hot flashes all day and night (more than even with the letrozole), greater fatigue, brain fog, and the joint pain i experienced on letrozole was back. I switched back to Teva and voila! All those new side effects disappeared.

Hope this helps explain why switching manufacturers and from one brand to another can make a huge difference.

I too found it incredibly frustrating that nothing was done for the bone pain I had on Arimidex and then Aromasin. I remember one night I woke from a sound sleep, tears running down my face. (Not sweat). I would lay there, panting and gasping from pain, just hoping I’d faint. Oncologist switched me to Tamoxifen after almost 8 months on AIs. Now that I have sleep and digestive issues (both directions) under control, I can say there is less pain. Not zero, but less. I had a total hysterectomy at age 46, so it was a decent option.

It made me so angry (I was told things like just be positive! Just be grateful, and you’ll feel better; have you tried breathing? Etc). I am grateful and yes, positive, but still....You are right to be mad about it. If oncologists are worried about non-compliance, and they should be, it would be nice if they worked harder on helping with SE.

Dee

I'm new to the forums. I appreciate the comments on hormonal therapy. I've had an unpleasant journey on trying to find the right treatment that I can tolerate, and now that I'm finally settled on something tolerable, insurance doesn't want to cover it! I started on tamoxifen, but it interfered with some of the other meds I was on and caused migraines and high blood pressure. Since I hadn't started menopause, I had to get injections to put me into menopause so I could take some of the other medications. I had one zoladex injection and started on letrozole. Then insurance changed and I was switched to lupron injections and stayed on letrozole. I had a hard time on letrozole...really bad joint pain from the waist down (it was incredibly difficult to get out of the car I was so stiff after sitting!) and I was so tired all the time I found myself dozing off at my desk. My med onc moved away which turned out to be a good thing. My new doc had a long quality of life discussion with me because I was done feeling like I was 90 at 53. We even discussed removing my ovaries. She kept me on lupron injections but switched me to exemestane. I still have some issues, but compared to letrozole, this is heaven! At this point, I took my last exemestane tablet today. I have to find out about the injections on Monday. I feel very blessed to have had an "easy" cancer and hate to complain, but this part of the journey has been the most difficult. I feel like I'm not fighting cancer as much as I'm fighting a beauracracy. Thanks for listening. ;o)

Thanks dtad. We've been divorced 35 years, and both remarried, but he's still part of the extended family.

keeshondmom, being both er and pr positive tamoxifen should be close to AI drugs are far as effectiveness. I would come right out and tell the doctor you wish try tamoxifen due to side effects. If you are prescribed then make sure you are monitored for the uterine lining on a regular basis.

As I understand this, they work in different ways. The AIs reduce estrogen production. Tamoxifen binds to estrogen and prevents cancer cells to use it. Somebody with more knowledge than me can explain it better I’m sure!

Thanks Ladies!

Dee, great explanation!! I had that somewhere in my mind now it has gelled completely. Thank you so much for your thoughtful post!!

You’re most welcome, CBK! It’s a pile to remember...

Dee

Gussy...so sorry you are suffering side effects from Anastrozole. Just wanted to say that everyone is different and side effects can get worse over time. IMO you should definitely see your MO to discuss your options. QOL does matter too. You might be able to switch aromatase inhibitors. Also some people find it helps if they switch manufactures. One thing for sure is you need to sleep! It's so important for our general health. Good luck and keep us posted.

Gussy, have you tried Magnesium glycinate? I also had trouble sleeping on AIs & magnesium glycinate has made a huge difference for me (some of the other forms of magnesium can cause gastric upset so be sure & get glycinate). And, as dtad mentioned, you may want to switch AIs. My SEs on anastozole were so severe that I didn't think I'd be able to complete five years on it. After a month's vacation from it (& feeling much better within days!) my MO switched me to exemestane. It's not without SEs but they are tolerable. Good luck in your search for an answer!