Doing Well on Aromatase Inhibitors (AIs)

OK, I have been on femara for 5 years so far. I am to continue at least another 2-3 years, maybe more.

I have had SEs, not saying that it has been entirely without drawbacks, but the main SE is that I am still alive after a pretty grim DX.

I have had no weight gain or serious complications. My joints sometimes ache, especially in my feet, and it is annoying, but not so bad that I can't deal with it. Eating a healthy diet and getting enough exercise seem to counter-act most of the SEs I have experienced. It also helps me to focus on the things I want and need to do, instead of focusing on, for example, achy feet. It does mean that I have had to give up wearing heels. I love shoes, so that is a bit sad. But life can be enjoyed in flats as well

Just remember, if you start experiencing SE's, there are other drugs. I started out on Arimidex, but couldn't handle the side effects. Changed to Aromasin and things got much better. There are still side effects, but nothing I can't handle. So don't get discouraged if the first one doesn't work out. Just change to another one and KEEP FIGHTING !

My worst SE thus far has been the combination of slower metabolism and increased appetite. Pain & stiffness are pretty minor (comparable to arthritis I was already developing); no hot flashes, just a little fleeting mild warmth that a ceiling fan will take care of; my hair is thinning, but no more so than before bc. Had a trigger thumb but a shot took care of it (and I had one on the other hand a decade earlier). I was osteopenic before starting letrozole, and have had a Zometa and a Prolia treatment since then—only way to find out if letrozole harmed my bones is to wait for my next density scan in Nov. (and if my osteopenia hasn’t worsened, no way to tell if it was the bone treatments working or the letrozole not being as harmful to my bones).

Glad to see this tread. Was wondering about those who haven't experienced SE's and those who might have used strategies that minimize certain types of SE's. Haven't yet met with MO but have been told with ER+/PR+ 100%, AI's are crucial to prevent systemic recurrence. Arimidex mentioned as likely med.

I have concern because of a pre-existing mood disorder. I've extremely stable for a long, long time, with one medication (a med typically used for epilepsy that stabilizes mood) but typical antidepressants, trigger problems for me.

• Have any folks with major depression, esp. BP 2 depression, come through without SE's. Was this serendipitous?Are there any steps you took to minimize mood SE's?
• In the hormonal therapy comparison chart, only one med —not an AI but Tamoxifen – is listed with mood or depression SE's. Are those with depression more vulnerable to mood SE's or so some experience mood SE's but not enough folks that it's listed in the comparison chart?
• Did any of you see a psychopharmacologist or other specialist for consult to help with choice of hormonal medication **or** for protective strategies (meds or otherwise)?
• Any complementary techniques help?

I have pre-existing problems with joint and orthopedic pain, especially arthritis in knee and some related issues with spine (stenosis and disc problems).

• Are those with pre-existing joint issues more susceptible to joint SE's and I should ask about back stenosis and related disc issues.
• I believe there are approaches to try to prevent osteoporosis.
• Any approaches that seem to protect joints (for those with arthritis) and head off problems?

I'd appreciate any insights.

This is very helpful. Thanks.

On anastrozole (arimidex) for the last 3+ years, started two weeks before radiation. I am doing quite well on this drug and have no major side effects to report apart from increasing osteopenia that I do not feel. Started Prolia a year ago and had two injections so far.

I exercise 4-5 times a week and take vit D3 (no calcium. ) Plan to continue on anastrozole as long as the docs want me on it.

Hi Butterfly,

Thank you for creating this positive, and hopeful topic! It's just what I was looking for, now that I had to stop tamoxifen (on for 14 months) for uterine issues. My doctor suggested Arimidex as a replacement.

Is anyone familiar with the advantages of using the Arimidex brand over a generic? When my maternal aunt had BC 20 years ago, she was able to take the actual name brand (Nolvadex) and NEVER had a side effect. I know it may be wishful thinking for me to assume the Arimidex brand, and not a generic, could be better tolerated.

Does anyone get their prescription by mail from Astra Zeneca's facility in Florida? I think it may still be available.

I can't tell you how great it is to read about those of you who are doing well on the drug. Appreciate any advice.

Thanks so much.

JaneyK

Those of us on Medicare Part D must pay outrageous amounts if we want the brand-name original version of the AI we’re prescribed, because very few if any Part D carriers even have them in their formularies. If I could have gotten Femara for $30/mo. I would have jumped at the chance. It would have been $700-900/mo from a U.S. pharmacy, and I paid $588 for 3 months’ worth via CanadaDrugs.com. I have found that Roxane’s version had the mildest SEs (and the fewest inactive ingredients—no dyes or coatings), then Femara, then Teva. Unfortunately, all my pharmacist can get now is Accord—and the CVS and Walgreen’s can’t even promise me that (“you get what we get” comes their reply).

I ameliorate the SEs by taking my letrozole at bedtime, along with two arthritis-formula acetaminophen to hold off pain, and 3 mg. melatonin and usually .25 or .5 mg. Xanax to help combat insomnia. I run the ceiling fan in the bedroom to hold off warm spells. And I take 200mg. of celecoxib (generic Celebrex) in the morning.

I have been on maintenance therapy ever since I had PPD 32 years ago. One of the advantages of an AI over Tamoxifen is that most antidepressants do not interact with AIs. And since antidepressants—especially SSRI/SNRI/SDRI types—work differently for different patients and must be tried out before finding one that works, that’s a huge advantage. I have been lucky to be able to take Wellbutrin (or bupropion, its generic) since 1999, and it’s fine with letrozole. Had I gone on Tamoxifen instead, I’d have had to switch to an antidepressant that isn’t contraindicated, and—as first occurred back in 1985 with tricyclics and eventually Desyrel—would have been thrown back into the “trial & error” pool of allowable antidepressants.

Probably depends on your estrogen levels before starting an AI, and therefore how precipitous the drop in estrogen thereafter. And different people metabolize drugs at different rates. It’s pretty much a crapshoot, but the further out past menopause you are, the more gradual the appearance of SEs should logically be. What complicates matters is that for those of us in our 60s & 70s, other symptoms of aging—such as osteoarthritis and slow metabolism—begin to appear & accelerate, and it’s hard to attribute how much of that is the AI vs. how much to the gradual and natural reduction in estrogen production. It seems to be especially tough on women who recently went through chemopause or had their ovaries removed—the double-whammy of relatively sudden deprivation of both ovarian-produced estrogen and that converted by aromatase from androgens. I think the more used to estrogen deprivation you are, the easier a time you’ll have. But your mileage may vary.

I swear by Finn Comfort walking shoes, especially the rocker-sole ones. Also Clark's Unstructured line, Vionic for sandals and (don't laugh) Hush Puppies for pumps (rubber soles, not-quite-flats but dressy enough). Alegria for clogs, because they have great removable orthotic insoles. Used to wear Mephistos (nearly 20 yrs) before my bunion & bunionette got so big that all their closed shoes were too narrow in the toe box. For sneakers, Hoka Conquest. Crazy-expensive (but not as expensive as the Finn Comforts or Mephistos), but like walking on marshmallows. Have one pair of Stuart Weitzman kitten-heel strappy gold sandals but wear them maybe once a year, an hour or two at a time.

Alegrias are usually under $100—and if you “like" their Facebook page you'll get on their mail list with access to clearance sales. My one beef with them is that the leather edges can be sharp, and my feet blister extremely easily.

You get only one pair of feet, and there are no reconstructions.

I have used SAS for decades. They are made in the US and very comfortable, of course, depending on style.