Jul 15, 2020 05:00PM flashlight wrote:
My MO said if I was going to travel by plane I would have to take a Tamoxifen holiday.
Hormonal therapy medicines can be used to lower the risk of early-stage hormone-receptor-positive breast cancer from coming back, shrink or slow the growth of advanced-stage or metastatic hormone-receptor-positive breast cancers, and lower the risk of developing breast cancer in certain women who are at high risk. They work by lowering the amount of estrogen in the body or by blocking the effect of estrogen on breast cancer cells.
Note: This is a safe place to share YOUR experience, not to be influenced or influence others. Please contact your doctor about any questions or concerns you may have if you are currently taking hormonal therapy.
Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020
Posted on: Jul 10, 2012 07:46AM - edited Nov 15, 2017 02:07PM by Moderators
I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.
I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.
Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.
Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More
Posts 17431 - 17460 (17,617 total)
Jul 15, 2020 05:00PM flashlight wrote:
My MO said if I was going to travel by plane I would have to take a Tamoxifen holiday.
Jul 15, 2020 09:09PM - edited Jul 15, 2020 09:12PM by ZEKE
Hi thanks my doctor warned me about stroke blood clots heart attack and cataracts with Tamoxifen.
I am scared but also scared that if I don't take it the cancer may return. I could not take any of the other hormone therapy drugs I tried to stay on them and Just suffered. With Femera I could barely walk. I asked my doctor if I could stay off it for a month to get my legs back before I go on the tamoxifen and he said ok. I will start it at the end of this week and see how it goes. I did hear the biggest complaint was weight gain on the tamoxifen.
Thanks for your reply!
Jul 16, 2020 03:48PM Laurencl wrote:
I have been on anastrozole for almost six months with some minor SEs ( joint stiffness). Today I noticed minimal hair shedding (hair in my brush). I am one year out off chemo this month and I know it sounds silly after everything (chemo, mastectomy, radiation and delayed reconstruction due to covid), but this is upsetting. Wondered if others have experienced this.
Jul 22, 2020 11:35AM mysticalcity wrote:
Yes--there is a whole topic on it: https://community.breastcancer.org/forum/78/topics/859567?page=9#idx_251
Anastrozole unfortunately can have that side effect--I had quite a bit of hair loss in the first year while on it. I took pictures each time I washed my hair of the huge clumps that came out. The good news is it seems it stopped/definitely slowed down in year 2 on anastrozole. The nurse practitioner at my MO office said that is usually the case--that it stops/slows down. I also think it seems to have filled back in a bit with baby hairs. I also started taking various daily supplements as soon as it started happening---they are noted in this study and I do believe they helped:
Lastly some on the hair loss topic thread used the LED hair loss caps and several thought that helped quite a bit. You can read more about that on that thread I posted link to above.
So it is very upsetting--I know that firsthand--the good news is that there are things you can do to help and it does seem to slow/stop after a period of time.
Jul 23, 2020 12:36PM petite1 wrote:
Hi, Ladies. I have had pretty good luck with Arimidex for the 7 months I have been on it. A few times I have had the sharp pain, I called it an electrical shock on my surgical side, but I think it is from the surgery and radiation. My finger joints on my right hand get stiff. My middle finger locked up last night. I have exercises I am suppose to do, but it was difficult with that finger. This morning it seems ok. I was on statins before BC, but did notice an increase on my labs last month. The PCP did not change my dosage.
Jul 29, 2020 12:06PM PontiacPeggy wrote:
Micky110, nausea? I had no nausea at all. Not when I started nor for the 5 years I took anastrozole. I don't recall anyone mentioning that. Please keep in mind that many women have no trouble taking anastrozole with few if any side effects. Of course there are women who do have problems. But I wouldn't anticipate having problems. If they crop up, we're here for you and so is your MO.
Jul 29, 2020 12:48PM BlueGirlRedState wrote:
Micky110 - I do not experience nausea with Arimidex, so no tips on what helps. Cancer, its effects, the success of treatments, SEs are all over the board. A huge spectrum. There are several threads on Anastrozole/Arimidex on breastcancer_org. Maybe someone has posted there. Below are just a couple of the threads. With so many threads it can be hard to find specific information, maybe do a search on hormonal therapy, AI, anastrozole, Arimidex and nausea. THe AI might be called different names, spelling, upper/lower case etc. I do not know how "fussy" the search engine is.
Jul 29, 2020 09:38PM Tobyholicdeb wrote:
I had the same problem with my fingers locking up. I had to have 3 of them operated on. My hair is falling out, I've gained 50 pounds, my joints hurt, lots of hot flashes and I've been on Anastrozole since 2014. Last year, the doctor told me if I could hold on for one more year, I could go off of them. So I was counting down the months but when I visited him in June. He said it would be a few more years. I was shocked that I went out to my car and cried for 1/2 hour until I could drive. I know, I'm lucky to be alive but when he had my hopes up about getting off of them, it felt like I was "sucker punched". Has this happened to anyone else? By the time I get off of these pills, I'm going to look like the Pillsbury Dough Boy.............bald and fat
Jul 30, 2020 01:23PM BlueGirlRedState wrote:
Tobyholicdeb - I'm sorry that you are experiencing so many SEs and the oncologist is recommending that you stay on AI for several more years. Initially brand name Arimidex did not seem to have the SEs of the generic Anastrozole, and they are not as severe, but my hands are stiffer, and one finger on left locks up. I have been on Arimidex/Ibrance for almost a year now, no metastasis indicated (Sept 2019 PET), but this is the 3rd time for BC. Hoping the Ibrance knocks the S****** out of it. Oncologist has indicated that she would probably Rx both drugs for years, even if there is no longer any evidence of cancer. There are several threads on AIs, hormonal therapy on breastcancer_org, and people do post what seems to help them. Everything from hand exercises to a variety of supplements such as turmeric, glucosamine, comfrey, CBD salves (with/without THC). Searching the site can take time to find what you want, but I find it helpful to hear from others eperiencing the same thing.
Jul 30, 2020 04:39PM flashlight wrote:
Tobyholicdeb, Maybe get a second opinion or try a new MO. I recently switched and it has made such a big difference in my treatment. I read another post about hair loss and she had been on anastrozole for 5 1/2 years and stopped due to her bone loss. Another the doctor decreased her dose. Maybe there is another solution if you want to continue on this med. Best wishes...
Jul 30, 2020 09:00PM count_it_all_joy wrote:
Zeke - I had a really good experience on Tamoxifen. Six years. Initially, had some odd side effects like face tingling, hands and feet burning, leg & feet cramps every night, hot flashes every few minutes, etc. Yuk! But things settled down, and I found my ways to deal with what stayed. Mg & b12 for hands and feet. Face tingling just went away. Tonic water (quinine) on ice with lime, and Mg took care of nightly leg cramps. Didn't gain weight or lose hair, that's always good! I'll be interested to hear how your joint pain resolves. Hope you are feeling better all the time, and have a good experience with Tamoxifen.
Jul 31, 2020 08:48AM flashlight wrote:
Tobyholicdeb, If you put in hair loss on anastrozole or something like that in search different post will pop up for you to read. Have you had your vitamin D level checked?
Jul 31, 2020 12:14PM BlueGirlRedState wrote:
Tobyholicdeb - be patient with searching. People post SEs and what has worked not worked on so many threads and in so many ways. "Remedies" for SEs work well for some, and not for others. I think biotin helps with me with weak nails, not sure if it does much for hair. Getting vitamin levels checked as flashlight suggested is a good idea for overall health. You might check what people do for hair loss on the chemotherapy blogs - even though it is a different drug causing the problem - some post on bringing hair back, keeping it healthy. Hair thinning for me seems to have reached a steady state, but my nair does not grow like it used to or feel as nice.
Aug 1, 2020 10:41PM ZEKE wrote:
count it all
Hello! Thanks for your feedback. The good news is that I have been on the Tamoxifen since July 17th.
My joint pain finally went away and I can walk without pain again! I do get hot flashes once I awhile but so far so good on this. It’s completely different then the last three that’s for sure!
Aug 8, 2020 05:36PM sparky13 wrote:
I started Anastrazole 2 weeks ago and I am already dealing with joint pain. OTC meds are not really helping. I am trying Glucosamine/Chondroitin and Curcumin supplements. I've heard that gluten free diet can help with symptoms.
Has anyone had any success with a gluten free diet?
Aug 9, 2020 10:34AM Stellawt57 wrote:
Yes Sparky, eliminating gluten helped reduce my joint pain! I also take curcumin and have bi-weekly acupuncture treatments, these treatments also help with others side effects that I’ve experienced. When I started acupuncture treatments I went 2x weekly then 1x each week and now bi-weekly. Several others have shared that they take Claritin for relief of joint pain. I hope this helps.
Aug 9, 2020 01:34PM BlueGirlRedState wrote:
sparky - brand name Arimidex seems to have fewer and less intense SE than generic anastrozole, at least it did for me. Less meat seems to help as well. Turmeric also helps. Use powder with pepper in meals as well as supplements. Dietary seems better than supplements. Acupuncture also helps, recently trying electro-stim with acupuncture. No experience with gluten free. Brand name Arimidex $2/day if i buy; $10/day through insurance; generic, pennies/day
brand name Arimidex https://www.eaglepharmacy.com/drug/arimidex
Aug 10, 2020 07:49PM HikingLady wrote:
I had joint pain, stiffness, fatigue, and it was all difficult the first few weeks after starting my AI. After maybe 2 months, I felt pretty normal. This is exactly what my MO predicted would be the case, based on his years in practice and many patients' reports to him. I am sharing this, because it all did get better, and when I started on Anastrozole, I was grateful that people chimed in on this thread with cheering and positive reports. Everyone's different, and often, we feel better after a few weeks on the AI.
I continue to have sticky joints--they do get a little stiff, and I have some occasional joint aches, but I did already have arthritis---I don't think it's tons worse on my AI. My thumbs occasionally lock up. I am stiff when I sit too long. All of this is mildly irritating, but not horrible. I feel much better when I get 1 hour of exercise and drink a lot of water every day.
Aug 10, 2020 10:49PM Whatjusthappened wrote:
I just had some lab work done and my cholesterol has gone up since starting anastrozole. Not surprising, since that is a common side effect, but upsetting nonetheless. Who has had success getting their level down without statins, and how did you do it? Beyond the obvious eating less cholesterol, that is.
Aug 11, 2020 12:55AM fluffqueen01 wrote:
Sparky13-I had to switch from tamoxifen to Arimidex when I had a wonky Pap result. On Tamoxifen, I didn't really have side effects other than hot flashes that were so bad all day, I would almost have anxiety attacks when I felt one starting.
On Arimidex, the flashes were much more manageable but I had a lot of joint pain. My PCP put me on Cymbalta, off label, saying there were lots of studies of how it helped with joint pain. Oncologist agreed. It was a game changer. I also switched over to the actual brand Arimidex, not a generic. It is more expensive, even with the assistance program they have, but I feel like it made a huge difference. I pay $180 for 3 months. I will go on medicare in December and I think then I won't be eligible for the program, but I also think I can go off Arimidex then if I want too. I am mainly taking it now just because she lets me take premarin for relief from the down there issues, as long as I stay on ARimidex
Aug 11, 2020 10:47AM PontiacPeggy wrote:
FluffQueen01, I'm rather surprised that your MO is prescribing Premarin since you are apparently ER+ (as you are taking Arimidex). I have never heard of that being done, not that I'm an expert. Many studies have indicated that HRT can contribute to breast cancer. What has your MO said its use? Or did your PCP prescribe the Premarin? To me, again I'm no doctor, it would seem that Premarin would cancel out the benefits of Arimidex.
I've had friends who have used Cymbalta like you are and had very good results. Glad it has helped you.
Aug 11, 2020 01:13PM - edited Aug 11, 2020 01:13PM by Kkukowski
Sparky: I have been in anastrazole since April 2020. Got joint pain pretty quickly. Especially in my shoulders. I was having difficulty getting to sleep or staying asleep. I started glucosamine and after 3 months of no change I stopped it and am now trying magnesium. In an earlier thread, someone shared a link to magnesium options.
I also take gabapentin and melatonin at night. The past 5 nights I have slept better. Not sure if it's because of the magnesium or the symptoms just get better after a few months, as others have said. I am just so grateful when I can get good sleep.
I have heard about turmeric but my Onc says that is not ok for me due to history of clots. My next option would have been CBD oil and acupuncture. I still may try acupuncture but am a little nervous about that.
Aug 11, 2020 02:02PM mysticalcity wrote:
I've had side effects but not too bad with Teva brand of the generic. I had read on this forum theTeva brand (outside of the brand name Arimedex) seems to have fewest side effects for a generic. Also I am taking turmeric, boswellia, omega-3 and magnesium which I have felt all have favorably impacted my side effects--my MO said the first 3 have been shown to help with the joint pain from the anastrozole. Kkukowski--maybe the boswellia or omega-3 would be an option for you to at least ask about??. . not sure about them with the blood clots. Also exercising--even just walking--daily helps me a lot with the joint pain/issues. I really notice a difference with no exercise.
Aug 11, 2020 04:37PM BlueGirlRedState wrote:
fluffqueen - You can probably stay on brand name Arimidex if you purchase directly from a pharmacy in Florida. I pay $2/day and do not go through insurance. Insurance would have charged 8-10/day. I am not in any program that I know of. Not 65, yet. I sure hope I do not get cut off. My DR sent RX request to them, they bill automatically to my credit card. https://www.eaglepharmacy.com/drug/arimidex
WhatJustHappened - I do not know if it is the cancer, cancer drugs, getting older, but my LDL is a little high and HDL a little low. Arimidex probably makes it worse. To me seems odd given my diet and activity level. This started happening before any cancer Dx, so maybe age or genetics? Maybe I get more plant based fat (olive, flax) than is good for me. Very little animal, but maybe I should cut down on dairy. I hike/walk daily. Sometimes swim. Maybe it is time to hit the treadmill again. I will put it on the list of questions for the primary and ND. Primary did suggest exercise to increase the HDL, but I am not sedentary. Also looking into intermittant fasting ( 5 normal, 2 restricted).
Aug 11, 2020 06:34PM count_it_all_joy wrote:
Zeke - glad to hear it! such a trial and error to see how we respond, and I'm happy your body is doing well with Tamoxifen. :) What are you looking forward to doing now that the joint pain is going away??
My MO took me off anstrozole, and just started exemestane last week. We'll see how this goes...
Aug 11, 2020 09:24PM JRNJ wrote:
I'm on the edge and ready to lose it. I took Aromosin for 6 weeks. Was in horrible pain from head to toe, with a bad headache, and everything felt swollen. Started immediately after taking pill, and stops within 24 hours of taking pill. I switched to Arimidex last week, every other day. Same symptoms right away, a tiny bit better. Less headache, more fatigue. Sounds like an allergy to me. I took an Allegra on Saturday and a Clariton yesterday and felt like the inflammation went away within 1 hour and I felt better. But antihistimines make me dizzy and give me bad insomnia, I haven't slept in two days. Getting my ovaries out 8/25. I'm hoping the Lupron is contributing to my misery and it will help when it is out of my system. I read on one of the forums that people do take Clariton for the bone pain. Any thoughts? Are these side effects or an allergy? Why do some people have no side effects and others horrible side effects? I don't think the Cymbalta will work, I also react very badly to SSRIs.