For Arimidex (Anastrozole) users, new, past, and ongoing

I'm close to five years on AIs. Got eye exams yearly, and every year since starting AIs (first Anastrozole, now Femara) eye changes were marked: dry, Rx changes, two years ago a cataract was detected. My ophthamologist says AIs commonly have these effects. Speeding up aging? drying everything up?

Hear, hear MissouriCat! I try not to lose sight of my luck in having a treatable form of this disease.

Isn't the variety in this affliction amazing , amazing that these variations are all given the same name?

Melmax - I take mg Arimidex brand name, which I think has fewer/not as bad SE than the generics. Even though the drug people will tell you that generics and brand name are the "same". Still have stiffness in hands, and one finger on left very prone to locking up. Also taking Ibrance.

AnnC2019 - thanks for links to Eye issues. Have checkup on Monday. They have monitored for glaucoma, been border line for a while. I think cateracts have increased over time. Age? Rxs? But not "bad" enough" to consider surgery. Biggest thing I have noticed is that a single focus glasses for distance really screws up near vision. Tried "progressives" and could not master them. Night vision does not seem as good as it used to be, and headlights at night really scatter.

Take supplements. Multi, BoneUp, Mg, D, C, Gaia joint turmeric, glucosamine-Chondroitin.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

6/18/2019 Swelling in R-arm, opposite side from where lymph nodes removed. Ultra sound showed no clot, referred to my DR.

8/2019 CT, Breast/chest , neck/thyroid ultra sound

9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)

9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery

2/7/2020 . CT showed tumor in Axilla shrunk , but also showed something suspicious in lower bowel. So....... another biopsy scheduled. DR said it should have shown up in the PET scan earlier, could be an artifact since area hard to image

All of my discomforts about being on Anastrozole got better in a couple of months and they've stayed at a very tolerable level since then. I have found that drinking a lot of water helps me with headache and joint pain issues. Be sure to mention all your discomforts, including the headache and its onset dates and a full description to your MO, so he/she can help you troubleshoot some solutions.

Definitely stay hydrated to help with headaches.

I was ex’s Effexor for the hot flashes, did help some.

Mimikyu - I did a lot of research and decide to try Cymbalta, also. I start tomorrow. I am praying it makes a difference.

Annie

Wanted to thank you all, too. I gotta start keeping my beloved Arizona Iced Tea by the bed during sleep hours. And I'd read elsewhere about Claritin improbably helping with aches/pains -- I had some around here for occasional allergy wheezles, and literally just popped one with my nighttime meds before opening up this board.

It's just getting difficult to look at that anastrozole bottle and think, "but you really have to take this whether you want to or not."

AI's are not good for joints. My carpel tunnel was before BC and mainly in my thumb though. Some of us have found generic Claritin is helpful for joint pain. Others have cut down on the carbs. My sister swears it's the gluten, not the carbs per se. (I'm going to try that when I get back from a vacation in April). Ibuprofen helps inflammation too. You may also want to try a different AI.

Keep your chin up, straighten that crown!

Mimikyu - I haven't posted here in awhile, but am now finished with my treatments and got to ring the bell at the end of December. I started with Anestrozole just before finishing treatments. I do have the neuropathy associated with the chemo, but it is tolerable. What is not tolerable is the side effects of the Anestrozole. About three weeks ago I started with the bone and muscle aches making it hard to walk, sit and get up, or even lay in bed. I find it hard to turn my head more than a few inches to either side. However, I don't have the headaches you have, but I assume that yours are associated with the neck problems. I thought it might be from the radiation, but when I had a follow-up visit with the radiologist she said it was probably the Anestrozole as that was one of the side effects. She set me up with a PT a couple of days ago but that made it worse. I called the oncologists nurse to have them call me b ack last Thursday. Today is Monday so I called again and still haven't heard back from them. I stopped taking the pill as of today and it is close to 6 pm so don't think I will hear again today. I'm furious!! If I have to live like this for 5 more years, as I am now 77, that will be for the rest of my life. I'd rather take the chance of the cancer recurring than go through this for 5 years. I did try the Claritin but no relief. Feel like I am 100.

Thanks for the claritin info. I started back on the other day....allergy season never ends in Fl, so hope it helps in other way

Is the joint pain/problems permanent? Even after the five year AItreatment is over and you stop taking it?

I also had chemo first. Se lasted 1-2 months, then eased down to tolerable. Cat Mom is probably correct, those without se don’t come back. Some like Peg and me hang around. 😎😎

Hello, I soon will be taking Anastrozole. I have been on Tamoxifen for 4 years, recently had an Oophorectomy and now it is time for Anastrozole. I was wondering if it would make any difference in the side effects if I take it in the morning or at night before bed? I'm not looking forward to bone/joint pain and I know everyone is different.

TP get usually get chemo before AI's. I started mine about 6 weeks after Taxol and had another 7 months to go on Herceptin.

Joint pain is very common with AI's. I was taking chrondrochin/glocosime and Calcium with vitiam D before BC as I had had several orthopedic procedures. My dex scan was good though. Have added biotin and turmeric as supplements. Claritin and ibuprofen may help. Also stay very hydrated and try to get some exercise. Do some stretching before you even try to get out of bed. Many have found a low carb diet helps.

Also, we seem to react differently to the AI's and many have found that the generic doesn't work because of the fillers adding to the SE's so pay attention to the brand generic you are getting. I changed from anastrozole to letrozole at about 6 months.

Having said all that, I stopped the femora in late January, feeling like 74 going on 80. QOL is an issue and I really don't want to die of dementia at age 96 like my mother did. Mammogram, visit with MO and BS in March but it is going to take some VERY convincing arguments to get me to start again.