Side effects from aromatase inhibitor other than joint pain.
I started on Anastozole (Arimidex) a little over a month ago. I know there are two others that are often given to post-menopausal HR+ women, Aromasin (exemestane) and Famara (letrozole). The joint pain and menopause like symptoms are what are mentioned most in articles. Although I've had some wrist pain, which I understand can be a SE, so far I have been fortunate enough not to have any real joint pain or menopause symptoms. What I am having are some gastro issues, especially heartburn and more concerning is that I'm seeing issues with my blood tests results, especially as it relates to Blood Pressure, Glucose, Potassium, and cholesterol. I never had any issues with any of these before taking this drug. I haven't found a lot of non-medical articles on these issues. I really hate taking this drug and would have never taken it if it wasn't recommend by everyone. My doctor originally said 5 years but everyone that I know that has gone on these drugs is told the same thing and then ends up taking them for the rest of their life unless they insist on going off of them.
I already exercise daily and am not overweight. I'll try and do more exercise and give up what few foods I actually enjoy to try to help mitigate any issues. Not sure what I'm asking here other than any ideas on what else I can do to combat immediate non-joint issues and long term side effects and if people really think continuing to take these drugs for years is really worth it? I start radiation treatments next week and am just trying to figure out what I should be doing I guess.
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hello
I took that drug for over a year and the pain started out manageable. For me it increased to the point of being unable to open a jar with my left hand along with a list of 8 other side effects. I took my self off after being told they ‘weren’t’ side effects because I had been taking it over 12 months. I changed Dr. who recommended aromasin. I will post a question about this drug. The original Dr said 5 years then later 5-10 years on the meds…..I just don’t know who is deciding, the Drs. or drug companies because no tests are being done, in my case, when these conversations are held.
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Thanks. Seems like a lot of guess work with little actual info on time to stay on the drugs or research on counter the SEs. I am especially worried about how my glucose and potassium levels have leapt up in just a couple of months. I only know this because I checked the results in my patient portal. I tried asking my oncologist about my heartburn and he said it wasn't a side effect. I would point out that he hasn't asked my once how I am tolerating this drug and shrugs off my questions. I really don't want to have to go on a bunch of new drugs to combat the side-effects of this one, I am also looking into changing oncologist.
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Hi @july31
Thx for posting this new SE thread on anastrozole. The lab is calling me in for tests, but I think it's for a baseline before Verzenio.
I will watch for elevated glucose and potassium.
I started anastrozole last week, and have hot flashes and night sweats already; the shakes. Alot of "gas" and biiiig belches,too.
(sigh) it's really frustrating, because when first dxd in October 2019, after surgery and radiation, I made it only into mid 2020 with the letrozole, then exemestane (severe allergic reaction after three days). I moved, got a new oncologist, was on tamoxifen and got SE from that! It would have been nice, had I have been able to stay on them as directed because in my case, BC came back as stage 4, I just learned, this past month. But who knows, it might not have made any difference at all. There are sooo many stories!Thank you again for your information. It's made me realize that in the least, I should go and ask the pharmacy for a "drug sheet" on this medicine.
Take care, and please keep keep us posted.1 -
I'm so sorry your cancer came back. Hopefully this time they will find a way to help you. When I tried asking my oncologist about the gastro issues, heartburn, belching, etc. he said Anastrozole didn't cause it. I had to do my own research. While the menopause-like issues and joint pain are difficult and potentially even more harmful the longer you take this stuff I'm just really concerned that they don't mention or are even aware about some of the other SE. Seems like they just throw stuff at you and don't give you any real info. I started radiation treatments this week and, although everyone is very nice, I just feel like a piece of meat during the process. I wish they would remember we are not just breast but people with a whole body we have to be concerned about.
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I completed 5 yrs of AI in 2023. Anastrazole affected me in the same way with GI symptoms. I remember complaining in exercise class about having heartburn and bloating. Started taking Prilosec occasionally. Mentioned it to my onc. She never heard of that side effect. Thought it could be fillers used. I quit when I started having horrible diarrhea that interfered with traveling. Think it was 6 mos on that AI.
My onc started me on Letrozole. Stayed on that for most of the 5 years. Did try Exemestane too.
All 3 of them caused joint pain for me. My blood pressure, glucose and cholesterol slowly increased during the time I was on AI. Was it because I was aging? Was it SE of AI? My PCP and Onc did say that cholesterol could increase because of the drugs. Not sure about the BP and glucose. My electrolytes were never affected. I stayed very active during treatment.
My numbers have not decreased since I completed treatment.
For me, the hormonal therapy benefits outweighed the risk because of the 3 positive nodes and my recurrence risk. I wanted to make sure I did everything to try and prevent a recurrence. Not everyone is in the same situation.
There is a test called BCI that can be done when 5 years are completed to see if there is a benefit to continuing. The result for me was no benefit so I stopped.
Have you asked your onc to try a different AI to see if you tolerate it better? Has your onc gone over your risk of recurrence if you don’t take an AI? You should be aware of all the facts so you can make an informed decision. You should be heard by your onc but ultimately it’s your decision.0 -
Thanks for the info on the BCI test, I'll stick with the Anastrozole for now I just want more info. Since I was diagnosed at the end of July I have met with my Onc twice. The first time was right after I was diagnoses and didn't know what to ask. The second time was when I was trying to decide whether to do chemo. He was not helpful and rather condescending. I am now in the process of trying to switch oncologist. Problem is the best ones where I am are all in the same group so it is taking a little time. Discussing using the AI and the SE will be topic one when I do.
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Update on Anastrozole
I changed oncologists, and she started me on Extremesene in August. By September, I was crying for no real reason, and by October, I was trying to figure out how to commit suicide without anyone guessing that that's what I did. Finally, in early November, one of my pastors noticed something and had a chat with me. During the conversation, he asked if I was on any new medications. He said I immediately needed to contact my doctor, and I did. I looked up the side effect sheet- guess what is listed first?
Everyone goes ballistic when someone says suicide. But what if it's the medication that messes with your brain? Within 2 days of not taking the drug, I was feeling less depressed. Within a week, days without crying. After 2 weeks, I forgot about all the sadness. When I looked into my health chart, I have a new diagnosis: Adjustment Disorder. Not given the wrong medication, Adjustment Disorder.
After being drug-free for 6 weeks, I met with the oncologist today.
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@jan2802 I'm so sorry you had to go through that. They really don't seem to be interested in any of the side effects, especially the long-term ones. I got a new oncologist and even though he was was more willing to answer my questions, he also said that he really thought I needed to be on Anastrozole for 10 years instead of 5. When I questioned how do they know if this stuff is actually helping I just got a "well studies have shown" type answer. I finished my radiology treatments about a week ago and and people keep wanting me to celebrate because I'm a "survivor." I feel a lot more like a diseased guinea pig that they are still experimenting on than a survivor. If we ask questions or complain they act like we are just being troublesome or overly dramatic.
I wish you strength and wisdom to try and figure out what to do and someone who will actually pay enough attention to you to help you through it.
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I wish we had the right answer. I’ve been on an AI for two years and Zoladex. My pain is so severe that I can’t open things, hold a mug, or even use my fingers. My pelvis hurts so much that it’s hard to lift my legs to put on socks or walk up the stairs. My knees are so achy that I can’t bend down. My big toes throb at night, and I feel constantly achy. My oncologist finally, after trying three different AIs, prescribed me a two-week break. I’m not sure what that will do, b/c I’ll have to go back on it. There aren’t any other options, and I’m frustrated that I can’t live like this forever. What can I take something for the pain that isn’t medicine?
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I spent 6 yesrs & 3 months on letrozole. SE's at first included not just the usual ones caused by estrogen deprivation, but GI as well. I found out that different forms (brand name Femara and various other mfrs' generics), while all containing at least 75% of the claimed dose of the "active ingredient" have laundry lists of "excipients" (besides the listed "inactive ingredients"): fillers (to help compress the powdered form into pills, preservatives, dyes, etc.—any or all of which can be irritants (or in the case of organic ingredients such as the milk sugar casein, be allergens or trigger systemic intolerances). I found that the forms that were the most "transparent" in terms of non-anti-estrogen SEs were Roxane and Teva—both of which were discontinued.
But though the letrozole kept me (knock wood) from progressing, it caused first elevated LDL cholesterol and triglycerides, which necessitated going on a statin…which then raised my glucose & a1c to prediabetic levels. My primary said that just because the AI caused the hyperlipidemia and the statin caused the hyperglycemia, didn't mean that these effects weren't real, lasting or dangerous. At a certain age, we learn that we can't fix one thing without breaking something else, ad nauseam, ad infinitum. I got the hyperglycemia under control with weight loss—kick-started on near-keto and then a GLP-1 (Zepbound). But that—while it normalized my a1c, cured my sleep apnea, obesity & even overweight (now BMI of 24.2, having started ar 34)—has GI side effects. The weight loss temporarily exacerbated the hair thinning that the AI started, and makes me less tolerant of cold temperatures, even indoors.
Again, at our age we have to spin the wheel of side effects and decide what we can live with.
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@chisandy I'm not overweight, but because high cholesterol runs in my family I have always tried to eat carefully to keep it down. When I went through menopause it was harder because I did gain a little weight them but I pretty much gave up anything actually tasty and kept in control. I refused any sort of hormone replacement drugs because of the possible side effects. Now because of the cancer I'm on this hormone drug that may cause my cholesterol to go up. It is so frustrating because i feel like all of the work I did to be healthy all these years is being undone and when I try and talk to the medical people they just sort shrug and say if I have issues they can put me on more drugs, the very thing I tried to avoid. I just don't feel like they even care about the long term impact of al of this on our minds and bodies.
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I just had an appt with my Onc's PA. I tried to talk to her about my concerns about the long-term side effects of Anastrozole and she did everything but pat me on the head and give me a lollypop. I am so tired of having my concerns marginalized. All they want to talk about is joint pain and only those in your hips or back, even though joint pain in wrist and ankles are evidently common. She then tried to scare me into starting Prolia. The possible SEs of it are more scary than osteoporosis. I actually know someone that had the femur break while on it but they act like those things don't happen. They want me to take the Anastrozole for 10 years which at 67, means I will probably take it for the rest of my life even though I have no confidence that it is actually doing anything helpful. If I start the Prolia I will also be on it the rest of my life. I swear I think these medical professionals all have stock in these companies or something. I just read her notes in my Patient Portal and I'm not going to say she lied but she and I definitely have a different understanding of what was said on more than one thing. This is my second Onc so I'm not going to bother to find another but it is all just so frustrating. Sorry for the rant.
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