For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
I'm 56, have been taking AIs (trying different ones, now back to Arimidex) for about 2 years now. I have some joint achiness and hot flashes, the former managed with exercise and the latter with low dose Gabapentin and Effexor.
It's not perfect, but it's certainly doable. For me the benefit is significant, and I consider myself to be doing well and also post on that thread.
0 -
I had a mastectomy and with a low Oncotype didn't have to do chemo or rads. I did 5 years on Tamoxifen because my doctor pointed out that it reduced my risk of recurrence by 50%. Since I didn't do the other types of treatment I'm glad I had the medicine to do even if it was a bit of a struggle. But with exercise, water and supplements very doable. I know some doctors mention small percentages but still, a 50% reduction is huge to me. Even if I just have a 9% risk, dropping that to 4-5% is totally worth it.
0 -
Exercise seems to be helping me. I drink water when I feel a hot flash coming on. So far, so good.
0 -
Karmabd- I set the alarm on my phone to go off nightly at 12:30 AM. We're night owls. I had to set a time when I knew I'd be able to keep to that time. Example - some say take it with breakfast; which I eat at various times, never the same time daily. Do what is easiest for you to remember. Night vs day - various opinions throughout these posts. Try one and if you have problems, switch to the other.
Reader425- your last pill, woo hoo!
0 -
TinyDancer5, I also have been colder since starting my anastrozole Rx 1 1/2 yr ago, but have started having warm flashes. I agree I’d rather be cooler with many layers than figuring how to cool off!
0 -
Thank you for posting. I just began Hormone therapy this January. I am dealing with some of the side effects. It was good to read your post and note that there is light at the end f this particular tunnel.
0 -
Hi all, I haven’t been on here in a while but wanted to mention that I had many SEs from all the AIs, tried them all ended up back on anastrozole and have been for over 7 years now. The SEs definitely were different with each brand and when I could no longer get the Teva brand and had to take Zydus (sp?) my skin started to fall completely apart and many lesions on hands, arms and legs. Saw the dermatologist and he biopsied and said it just wasn’t what he thought but to use the urea cream and steroid cream and moisturizers and call if it got worse. Anyway, I finally fought for the brand name Arimidex and got it and my life has changed. I also took 3 weeks off. It is the only thing that changed. I don’t take any other meds. So if you are having problems with anastrozole, get your oncologist to prescribe the name brand and give it a try
0 -
My body seems to be adjusting. No hot flashes, sleeping better and not joint pain for few days.
0 -
Butterfly12 - I take gabapentin for neuropathy pain but it has been great for AL joint pain. I tried Cymbalta for the pain - when it was really bad at about 4 months in. I could not tolerate it. Now at 7 months, I only have stiffness in my hands and trigger thumbs. I can live with this.
0 -
Annie60,
Thank you for your reply. I take 100 mg of Gabapentin at night and it helps a lot with joint pain. If I feel like I'm building up a tolerance which takes a while, I wean myself off and start again. I'm always worried about SEs from these meds but as long as I'm taking Arimidex, Gabapentin is part of my drug routine
0 -
BennyBear: did the cortisone shot help with your De Quervains? After 4 months, I got the cortisone shot as the pain was intense, I just got it a few days ago and my thumb seems a little better but no relief on wrist and arm. I think I now have trigger finger in my right thumb as it is clicking and gets stuck. Not sure how my doctors can say it's not related to Anastrozole?
Hugs!0 -
ItsHandled444 - anastrozole definitely associated with joint stiffness/pain and trigger finger. Middle finger on left locks up when unscrewing lids, pulling on lymphedema sleeve etc. Other fingers a little stiff, but do not lock up. Tumeric supplements (GAIA joint) and in diet (use black pepper); Acupuncture; magnesium, seem to help. Sometimes acupuncturist uses electric current with needles in finger. Brand name Arimidex seems to have fewer/less intense SE than generic. Buy direct from manufacturer $2/pill. Through insurance $8/pill - go figure.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric(Curcumin), Gluchosamine-Chondroitin,BoneUp(multi with Coligen),Thorne (another multi), Melatonine(at night).
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
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the 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, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray
0 -
@BlueGirlRed Congrats on good path report, that must be a great relief.
I have some joint pain in left hand and the occasional trigger middle finger from the Anastrozole as well. Thanks for posting about the black pepper and also about the meat, never thought about adding the one or cutting back on the other. Have been thinking about the acupuncture, going to try to find one nearby. May I ask how does one go about getting the Brand name Arimidex direct from the manufacturer?
thanks!
0 -
I wear braces on both hands for my thumbs and wrists when I work out. Tendonitis and arthritis in both. And I've slept w soft braces when they're both acting up during non gym time. I believe correlation to SE of the AI or loss of estrogen from AI.
Long story short, we were in NY due to a death in the family. I left the braces in FL. (Snowbirds) My thumbs hurt like crazy from working out at the gym 4x. My own fault, but we left in a hurry and they were the last thing on my mind.
Moral of my drama, see a orthopaedic surgeon if your hands get bad, hopefully they'll start you with braces, which have helped me.
0 -
AutisismMom1 - I'm still sending hugs to the first person who posted information about buying Arimidex directly from manufacturer. You might want to check what your insurance would charge, also maybe try 30-day first, see if it makes a difference. Your DR sends Rx to the Eagle Pharmacy in Florida, they contact you. https://www.eaglepharmacy.com/
0 -
Go to the AstraZenca website. There is info there on how to get the name brand.
0 -
Others have also posted about a GoodRx coupon that you can use at places like CVS to get brand name.
0 -
Hello Ladies!! Will be starting Als soon, pros and cons please, not sure on which one I will be on, any advice would be great!! Thank you
0 -
Maggie007 - talk to your DR about AIs,options, SEs, how to mitigate and why she is recommending the one she/he prescribes. Brand name vs generic, choices. What does your insurance cover. Not everyone gets SEs, and they can be variable. You can probably find a list of drugs on this site. I take Arimidex(AI) with Ibrance. I seem to have fewer/less intense SEs with brand name vs generic. You can get brand name directly from producer. This might be an option for other drugs as well. I think turmeric supplements and in diet help with joint stiffness (common SE), as well as acupuncture, exercise, stretching. Frustration - AI effectiveness does not seem to be monitored
0 -
Go for it and monitor any SE's that you might be having. I ended up taking a break and changing to Letrozole. My body is responding more positively to this one. My oncologist said they're all the same, but for some reason people respond differently- so keep your lines of communication open.
0 -
Keep in mind your SEs are likely related to the loss of estrogen, which will happen regardless of which one you’re on. I started on Anastrozole because my MO said that’s the one her patients have had the fewest problems with. I tried Exemestane for a month late last year just to see if I’d notice a difference and I really did not. Just anecdotally, I’ve read about more hair issues with Letrozole.
0 -
Started Anastrozole six months ago. Only troublesome side effect until this past week was worsening insomnia. Interestingly, found some relief - better quality sleep by switching from flannel night gown to short nylon gown. Thought I was home free except that mild bilateral shoulder pain became intense in rt. shoulder three days ago. For the mild discomfort, oncologist had recommended acupuncture. I'm wondering if anyone has had relief from acupuncture. I'm afraid I'm past that. It took Percocet (an old prescription) to reduce the pain to manageable levels. I see my MD tomorrow and will tell him that I stopped taking the Anastrozole this weekend and don't plan to resume. Does it make a difference which brand name it is?
0 -
Maggie007 - Hi there, from N KY. Hard to say how AIs will affect you. Some have more SEs/more severe SEs than others. Try not to have any pre-conceived notions about SEs. Do have a detailed discussion with your MO about SEs. I have been on them for almost 3 years, & while I have had SEs, they are minimal/manageable. Pros - Lessening the risk of recurrence!
Check out the link below for an alternate topic that I also follow - "Doing Well on Aromatase Inhibitors."
0 -
Good morning, ladies. Exercise is the key. I didn't do any yesterday and spent too much time on the internet and the joints are bothering me.
0 -
harleysmom, yes you may want to try another brand and give it more time. I switched from accord brand to TEVA and noticed a difference for the better. It did mean switching pharmacies several times. I'm much better in the mornings and hurt worse at night. I think its because I finally stop from being on the go.
My bone density was normal 2 years sgo when I started this drug. Just rescanned and now osteopenia. I work in a gym and run several days a week plus resistance training/yoga. Have taken vitamin D and calcium all along. I'm a bit bummed but I'm still more scared of recurrence than I am of joint discomfort. At least for now anyway
To be honest I was at my worst at the 7 month mark. Everyone is different. Definitely weigh the pros and considered and talk with your MO. Good luck deb
0 -
harleysmom - the generic as well as brand name might make a difference. I did not try a different generic or a different AI, but did switch to brand name and get Arimidex from producer. Acupuncture mostly has helped with stress/anxiety, sometimes joints feel a little better. Planning to try it with electric current again for a particularly troublesome finger. PLanning on looking into cranial-sacral massage and "heart mapping" as well, two people tell me it helps with non-cancer issues. Once person told me a therapist trained her how to give cranial massage to spouse who has sleep issues related to dementia.
0 -
Hello
I have just found this site. I was looking for to see if there were any lawsuits out there against the manufacturer of the drug Arimadex. I took this drug for 5 years. I did have a few side effects while I was taking this medication but the real side effects of the drug Arimadex did not start until I had quit taking. I now have severe lower back pain, my thighs experience a constant shooting pain that almost feels like they are being shocked. My vision is blurry and so is my thought process more often then not. I also have noticed that these small eczema like sores (mostly on my face) that take forever to heal. There is a place on my lower spine about the size of a large marble and as hard as a marble and it feels like it is attached to my spine. Is anyone out there experiencing any of these symptoms?? HELP
0 -
Dear LongtermSE,
Welcome to the BCO community. We are sorry that these side effects have brought you here and glad that you reached out for help. We are certain that some of our members will respond with their experiences and in the meantime you might take a look at this information gathered on our main site about Arimidex. Please stay active here and let us know how we can be a help to you.
The Mods
0 -
@itshandled, sorry missed your post, just had surgery and so haven’t been online.
yes the cortisone really helped. It’s notperfect but way better!
0 -
harleysmom- I had acupuncture for bad lower back issues years before BC dx. It took my pain away - I have 4 bulging disks (L2, L3, L4, L5) that caused enormous pain. My recommendation is to try it, nothing to lose except hopefully the pain.
0
