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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.

Comments

  • jan2802
    jan2802 Posts: 2

    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.

  • july31
    july31 Posts: 17

    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.

  • 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.

  • july31
    july31 Posts: 17

    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.

  • dimples90
    dimples90 Posts: 57

    @july31

    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.

  • july31
    july31 Posts: 17

    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.

  • jan2802
    jan2802 Posts: 2

    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.

  • july31
    july31 Posts: 17

    @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.