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Aromatase Inhibitors, the Drugs We Love to Hate, An Update

About a year ago I wrote two posts about the dark side of aromatase inhibitors, also known as, the drugs we love to hate. You can read Part 1 here and Part 2 here. Those two posts continue to be two of my most read posts and I frequently get emails about them, so I thought it might be time for an update. I won’t rehash what I covered in those posts, but as far as my personal experience goes, it’s been about one year since I stopped taking anastrozole (Arimidex®) and made the switch to exemestane (Aromasin®).

I feel a sense of responsibility to share not only when things are going poorly, but also when things are going better. And I can honestly say that so far (knock on wood) things are going better for me after the AI switch up. The decision to switch AIs was a good one for me and I am sharing about it because doing so might be an option someone else out there could consider before throwing in the AI towel.

It’s crucial for me to emphasize that obviously I am not a medical professional of any sort and my intent with those two posts (or any post) was never to suggest that someone should stop taking a recommended medication. I would never do that.

Rather my main intent was to stress, as always, that no one should ever suffer in silence.

No one’s side effects should be dismissed or brushed aside as just things one needs to live with. Too many women (and men) do still suffer in silence and hesitate to bring up side effects that are difficult to talk about and/or manage.

That attitude of, well you’re alive aren’t you; maybe you should just be grateful, content and quiet is out there. I have actually had such a thing said to me (not in those exact words) by a physician no less.

The question most commonly asked by healthcare professionals in regard to follow-up with AI meds might be, are your side effects tolerable? It’s the one I am asked at every oncology appointment anyway.

This is such a loaded question. I think it’s also sort of an unfair one as it can place guilt on a person by making her wonder why she isn’t more capable of tolerating the ‘ inconveniences’.

Have you ever been made to feel guilty about about not tolerating side effects? Not a good feeling is it?

Instead, I would like to see physicians say something like, tell me about your side effects (if any) and which ones you find most difficult to manage. I want to help. Let’s see what we can figure out together to try to make things better.

And as always, the mere validation of a patient’s feelings, pains, concerns, fears, side effects or whatever it might be, means more to patients than most physicians might imagine.

Every individual is unique and every person must evaluate and decide how to answer that ‘is it tolerable’ question.  For me, the side effects of Arimidex® became anything but tolerable.

Since starting Aromasin®, my joint pain has lessened substantially, though it has not by any means disappeared. I am back to exercising regularly and can walk without debilitating discomfort, which is what I experienced while on Arimidex®. I still have chemo-induced neuropathy issues in my feet, but the discomfort in my feet and joints is not what it was before the swap.

The primary side effects for me at this point are weight gain, hot flashes, hair loss, osteopenia (this one is most upsetting) and sleep issues; all highly annoying things, but tolerable. I guess. For now.

An important suggestion I do have for anyone on AIs who is dealing with joint pain is to be sure to have your vitamin D blood level checked and monitored. For quite some time following chemo, mine was horribly low and may have been partly to blame for my general ‘not feeling well’ state and also may have contributed to intensifying joint pain. Low levels of vitamin D can cause joint or bone pain and a feeling of malaise. A helpful post on this topic is this one, “Our Friend, Vitamin D,” by friend and fellow blogger, The Accidental Amazon. Do check it out. Your calcium level needs monitoring as well if you’re taking Vitamin D supplements, because sometimes D supplements cause a higher than normal calcium level. This happened with me.

My oncologist and I have already begun the conversation about the possibility of me staying on an AI for more than five years, but frankly, I can’t think that far ahead. I’m still trying to focus on making it through the first five.

I still have one more year to go.

I hate the little white pills some of us are forced struggle to take. I hate the side effects and how they inhibit my quality of life and how I feel when I look in the mirror these days as a direct result of taking them.

AIs are definitely the drugs I love to hate. But I hate cancer and the idea of giving it perhaps a better opportunity to reappear even more.

If you are struggling with side effects from AIs (or any drug) and contemplating discontinuing use, you are not alone.

You know your body best and only you can determine what is and is not tolerable for you. Your decisions are exactly that, your decisions. But remember sometimes switching drugs can make at least some difference. It did for me.

But AIs are still the little white pills I love to hate.

Are you on an aromatase inhibitor and if so, which one?

Have you ever switched meds and found another to be more tolerable?

Do you plan to stay on an AI for more than five years?

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Dottie

Tuesday 30th of July 2019

Hi Nancy: I am on Letrozole, though not the Femara brand. I've had 3 generics and the one I can tolerate best is by Breckenbridge Pharmaceuticals. I push through arthritis, but am finding some other very alarming side effects that are surfacing after 2 years on Letrozole. My nails are horrible. They're so weak and brittle that I can't even scratch an itch without them tearing into the quick. That sounds a bit petty, but I live in Florida and we're riddled with mosquitoes, black flies, gnats and yellow flies. Their bites itch like the devil! My gums are receding suddenly as well. I had to get a filling today where there was no cavity. The gum just dropped away almost over night. Lastly I just found out I have 2 ganglionic cysts on my left knee resulting from a torn meniscus which. It's my thought to request a PET scan and IF I have no hot spots showing, asking my oncologist if I can come off the AI. Even if she says no, I think the PET scan would be a very useful tool in going forward.

Shannon

Sunday 27th of August 2017

I'm glad I found this. I've been on Letrozole for about 3 years. I was just at the doctor and told him I'm glad I only had 2 years to go and he said no it's recommended for 10 years now! I don't want to think about that now, and I can't say for certain, but I don't think I'll be listening to that advice. The side effects aren't horrible, tolerable? I guess. I'm 55 and the normal things I used to do just happen a lot slower now and I hate it. Anyways, I feel good talking to other people who are on it like me, because I feel like some people don't understand and sometimes I feel I shouldn't complain, because it is saving my life, or is it?

Barbara

Friday 18th of August 2017

May I ask, how much weight gain? I am on hold from Arimidex and they are escripting Aromasin to my pharmacy to start in a week. But at the same time I have to lose some significant weight to get my blood pressure down and can't afford another massive gain like I had when I quit smoking (40 lbs in a month). I'm already dealing with a bad hip that seems to be due to the Arimidex and I am just about ready to call it all quits. I am a single woman who has to be functional and hold down a job and can't be dealing with all this.

Nancy

Friday 18th of August 2017

Barbara, I have gained twenty pounds since diagnosis. I am working hard to lose weight, but it's a struggle. I didn't gain more after switching to Aromasin, if that's what you mean. I do feel better on it than on Arimidex. My body could not tolerate Arimidex for some reason. I've dropped about seven of those twenty pounds. It's a slow process.

Beth Anne

Thursday 7th of July 2016

I survived a lumpectomy,chemo and radiation plus a thyroid removal during everything.I then had a meniscus tear.With that said, Iam going crazy on my second try at the 5 year drug! I am ready to call it quits and go on living the life I have.anyone agree?

Nancy

Thursday 7th of July 2016

Beth, You have to make the decision that works for you. And btw, I had a meniscus tear, too, during all this. My best to you.

Katharine

Saturday 9th of January 2016

Hi again An update from me in case anyone has similar issues. In my case, it was full body itching, with no noticeable rash. I found an endocrinologist who has published research showing that uses of generic adderall (the ADHD drug) can ease unexplained itching and pain caused by AIs, IBS and lots of other illnesses. He prescribed adderall for his wife when she had terrible bone pain from AIs that made her unable to use her hands, and it worked. He gave me 15mg and my itching started to dissipate within a week. After 2 weeks it had gone. Unfortunately, as I have now started to cut down to 10mg with a view to getting off the adderall, the itching is coming back. (I switched from arimidex to letrazole during the treatment to see if I could get rid of the underlying cause of the itching that way.)

So, thanks again Nancy for the blog and maybe this info will help people avoid the pain and itching associated with AI's. The doctor is called Dr. Jerome Check, in case anyone needs citations to persuade their oncologist or primary to prescribe adderall (in these very small doses, in comparison to what kids take for ADHD, by the way!).

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