Has Letrozole Led to an Unexpected Autoimmune Diagnosis?

I started in September as well. My joints are very achy, I pulled a muscle in my arm 4 months ago that hasn’t gotten better, I have severe joint pain in my hand and now my knee is bothering me. I’m trying to exercise but I keep getting hurt

No tests have been done but I’ve been on Anastrozole for 14 months and am experiencing joint pain and swelling in left elbow and left knee. Don’t see my oncologists PA until the end of April

Oncologists should be aware of the potential development of autoimmune reactions in breast cancer patients treated with aromatase inhibitors. https://pmc.ncbi.nlm.nih.gov

Louise, I can’t find the article, can you give the exact title?

I just copied a portion of the article. I Google Aromatase inhibitions and autoimmune

I am on a clinical research with either Letrozole or a drug called GDC 9545. I don’t know which one I’m on, but I have extreme pain in the joints, especially my left hip and my right knee. I’m wondering if Letrozole could be the cause?

I believe the extreme stress cancer or any other major health change can cause other auto immune or pain type syndromes. Will it show up in bloodwork... Maybe. Do we go off to all these specialists the oncologist tries to send us to? It depends....what the specialist would do for the problem. If it's medication, are you even willing to take anything else? It's so hard

It’s really scary. I have my pills but can’t bring myself to start taking them . I read so many bad things from people who have.

Sylvia- I am right there with you. Oncologist says I need to be on hormone blockers for 5 years. I’ve read about all three options and am not happy with possible side effects from any of them. My oncologist’s perspective is we can give you other drugs to counteract side effects. Not the solution I’m looking for!

Absolutely not. I’m just taking my vitamins which include DIM and a couple of others which are supposed to guard against cancer. Healthy diet and exercise together with a positive attitude.

Silvia, what is DIM? I’d also love to know what vitamins you’re taking that are suppose to guard against cancer! Thank you!

I take letrozole and have joint pain that some days is pretty bad I have did and also have ILC both in left breast 95percent estrogen and progesterone positive.. so am frightened not to take this horrible med. I also take grape seed extract vitamin that is supposed to be a form of Aromatase inhibitor. I also looked up polyphenols. Hope this helps

Hi Leigh B, I’m obviously not a cancer expert, so wouldn’t be qualified to prescribe any treatments as beneficial. However in my research I came across a book on Amazon called ‘Cancer Secrets’ by an integrative oncologist, Jonathan Stegall MD. I gleaned a few tips from his book especially from chapter 7 which is about supplementation in cancer prevention and treatment. DIM was one of the supplements he recommended, along with a few others such as probiotics, D3, E, melatonin and zinc. There’s also a great chapter on healthy foods. I found the book very helpful and easy to read. Hope this helps.

I've been on astrolazole for 3 months with no issues so far i was told it's the one that's well tolerated

I took DIM for awhile before I got cancer and I was told by one of my doctors not to take melatonin

Hi Laura, what reason did your Dr give you for not taking Melatonin?

Sounds like my breast surgeon who had negative remarks about everything except surgery.

I was scared to death about taking tamoxifen but having a 9 year old there was no option. 7 months later I have lost 11 pounds and have zero side effects. That said, the first 2-3 months I was definitely tired and had brain fog but I stuck it out and got past it. Now I would never know I’m on it. My oncologist mentioned there are so many women who don’t have side effect but we don’t know it bc they aren’t on most of these forums talking about it, just the people who are, trying to find comfort and relief. Makes sense. So, if my ANA came back high I would go see a Rheumatologist then talk about switching AI Good luck.

Jennifer you are amazing and inspiring

Thank you all First available appt with rheumatologist is November!! On a waiting list… Getting additional bloodwork in coordination with my PCP and she is trying to get me in to rheumatologist sooner Thanks again!!

Has anyone had pain under breast after lumpectomy? Burning pain, rib area ? It’s been 12 years after radiation and pain is getting worse.

About 6 months after radiation, I got blood hematoma under my breast and got feverishly sick. Had it biopsied and diagnosed with morphea ( deep tissue and localized form), my radiated area has been constantly peeling and creating open wounds. I've tested negative on all autoimmune blood work. Had to thru hyperbaric oxygen therapy to close my steph infections that are antibiotic resistant. Can't go thru a mammogram cuz of pain. This affects all my organs , it's not superficial. Took a hormone blocker shot and started the pills maybe for a week then stopped, about year n half ago. The side effects are more harmful than good. I control my hormones, which are made by your brain but controlled by your gut. Stay clear of hormone disrupters like; chemicals exposure, especially industrial. I have all my water filtered, don't use plastics for anything that's consumed, eat mostly organics , little starch like some bread, use only 3 oils, eat many foods that are anti parasitic, probiatics, I take methylated multi vitamins ( body health has a good one) , had all metal fillings removed, don't ingest fluoride ( which is in our tap water ), don't use bleach etc....I made many changes....hope this helps......oh, I had no chemo, my radiation was preventative not life saving ( big regrets) , I have metal toxicity and allergic to cobalt and nickel which is used as alloys in surgical clips thus I believe is the culprit for my autoimmune. Allergic to steroid cream used as treatment for my autoimmune.

Than you for this information!

Yes after taking Letrozole for 3 years. I was diagnosed with an autoimmune disorder called CVID a rare blood disorder. Then I had genetic testing and I have it genetically. I also found out a lot of people who get breast cancer they actually have autoimmune disorder undiagnosed. Which puts a strain on your immune system and your body has a hard time fighting off cancer cells.

I m taking amastrazole for one month. Zero side affects and lost little weight.