For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Thanks Peregrinelady & HikingLady for your responses. Good advice! I've left a voicemail and an email for my doctor's office. I haven't heard back from them yet. I'm really nervous being at work. Not only for me but also for my husband. Shortly after I finished all of my treatments he had a heart attack. He's also in the food and beverage industry so he's working also. I actually worry more for him than I do for myself.
I hate this virus. Tomorrow is my grandson's 2nd birthday and Monday is mine. I won't get to see him on his birthday and I won't get to celebrate mine. I hate this virus more and more everyday.
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anastrozole --been on only one week. Major digestive upsets. Worse heart burn I have ever had with severe pain,dizziness, vision only blurry grey, unable to eat. Bed ridden for 1 1/2 days. I don't understand the link between estrogen and my digestive system.
Do the other post menopausal drugs have the same effects? Five years is impossible at this rate.
Thank you.
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Augustkm When I started on my AI, my MO told me that in his experience, difficult side effects usually lessened over time. How long does that take, I asked. He said, in 2-6 months, I should feel better, and to please hang in there. At the very beginning, I had all sorts of weird things: dizziness, nausea, exhaustion, severe joint pain, etc. It all got a ton better in 1-2 weeks. By 3-5 months, almost none of that, ever. I feel okay now. I feel best if I get 1 hour of good exercise each day + drink lots of water.
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Hello!! I have received my bottle of Anastrozole and it is sitting on the counter. Debating whether to start in the morning or at night. I just can’t decide. I already have hot flashes and night sweats and some joint pain. My PCP gave me Gabapentin and I took my first one last night. I like what Hikinglady said that symptoms may lessen after taking for a while so I just need to buckle up and start!! Here’s to 5 years starting now!
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I take mine in the morning with breakfast. If I take it with an empty stomach, I feel unwell, nausea, etc. I did have difficulty walking upon waking at the beginning, but now only if I sit too long. Exercise does help.0
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I always took mine before breakfast. Zero nausea or anything else.
HUGS!
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Kkukowaski - I take Arimidex, brand name , during breakfast with other Rx and supplements. No digestive issues, but the stiffness and trigger finger in my middle finger left hand continue to plague me. Other fingers and hand seem ok. SEs and what helps lessen them vary a lot. Some people do not seem to have SEs, others, a lot. Sometimes a different generic, brand name, or different drug help. There is another forum on this site that I see from time to time where Anastrozole users who are doing well post. The first time with a generic anastrozole, stiffness in both hands with several fingers locking up was almost immediate. After several months I switched to Tamoxifen. When a new BC found on the other side was found last year, my DR switched me to Ibrance and Arimidex. I take brand name Arimidex, and find the SEs (joints) are much less than they were with a generic. I think turmeric helps as well. I take GAIA "joint". There are several other formulations of GAIA and other brands as well. Also use turmeric in cooking. Hydration and staying active are also important. Acupuncture might help as well.
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 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Urgent Care looked for clots, none found, told me to see my regular DR. Who referred me to a lymphatic therapist.
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. New 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 to remove lower bowel obstruction, no cancer found, hooray
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A low dose of Cymbalta (20mg 1xday) eased my joint pains almost immediately. I had them in a lot of places.
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Kkukowski- you got this! Take it when its best for you. I'm a night owl, alarm on phone set for 12:30 AM, that's when I take mine. I had some SE, but 3-6 months out I leveled off and now just live with it. Nothing horrible, but I will be glad when I'm through. ❤
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Hello,
I feel I must share the following information if I could possibly help someone from going through the hell that I went through since being on Tamoxifen. All I want to do is to ask you to be aware and to advocate for yourself. I believe I had the worse adverse effect that anyone could possibly have, my current doctor stated that I am the Worst Case he has had - he has treated other people with the same type of reaction.
I broke down my symptoms in categories to make it easier to read.
I had every side effect for Arimidex and Tamoxifen which are listed on this website.
Bone pain: I started out having severe chest pain my sternum and severe myofascial pain syndrome. I started on Percocet 4 times a day and ended up on Morphine, this has been going on for more than 5 years. My sternum feels like SWISS CHEESE. My doctor called it CHEST WALL PAIN. The pain was in my back, my ribs, my shoulders, my arms, legs and the 2nd worst area is my pelvis/hips (I can feel the head of hip in the socket - it bone crushing and extreme heat/swelling) feet and hand, my head even hurts. I had a bone scan before going on the medication because of the side effect of the medication (I was excited my oncologist was be proactive) Now my doctor never checked it after I started having problems. I had Another doctor ordered a repeat bone scan in December which shows I have SEVERE BONE LOSS IN WEIGHT BEARING BONES and MY CHEST. NOW HAVE OSTEOPOROSIS! OH, I almost forgot my second and best Plastic surgeon stated he NEVER had someone with such severe muscle contractions in their chest that it squeezed so much that the contractions actually pushed my breast implants out of my chest during a breast implant removal. That's right I lost the breast implants that I was fighting so hard to keep - so I could still feel like a woman. (looking back I should have had them removed immediately since I was in so much pain so quickly after having them put in.
Muscle Cramps: Beside, sternal bone pain I had severe muscle cramps. It started in my lower legs between the two bones. It would take up to an hour to rub out a cramp. I was on fish oil, large doses of calcium and magnesium with limited success. I had a physician finally test for muscle damage, the result for a normal high is 300 and my results were 3900. After the test, an Oncall doctor called me making sure I didn't have symptoms for a heart attack. She stated that's good because your lab was a little high (REALLY 3300 times higher than normal) I was told to drink water to protect my kidneys. I just found out it's too late, I have kidney damage. The muscle cramps they were in my feet (my feet would curl) the cramps had unfortunately expanded to other areas: thighs, chest, upper back, hands, arms, and abdomen. The abdominal pain was so bad I was throwing up and I couldn't even breath it was so bad. No suggestions from my doctor except for putting me on 8 mg of Zofran 3-4 times a day. I was grateful for that.
Migraine headaches that didn't not responding Imitrex.
Edema/Swelling: My hands, feet, chest, face, and eyes were swollen (I was initially treated for lymphedema). My skin was/is so swollen that they are shiny, my skin will or could burst its weeping (leaking). I don't want to and I can't bend my toes and my fingers due to the edema/swelling. My thighs and knees are so swollen it hurts to bend my knees and even to walk. Shoe size changed: two full size and still are tight
Hot flashes initially minimal then proceed to be dripping wet. (don't go on an Antidepressant or benadryl for this). It's written in the Tamoxifen literature not to take these medications.
Constipation: I was so constipated it was 7-10 day between movements.
Exhaustion and sleep deprived: I was so tired and weak because I only got 2-4 hours of sleep.
Vision: My vision is so bad, I can hardly see what I am typing right now. I have had 4 eye exam in 6 months with multiple prescriptions changes.- I have headache when trying to use my phone/computer or reading, in the evening I can't even see what is on TV while sitting 6-10 feet away.
Hands and feet hurts so bad I have extreme difficulty in bending and walking.
The pain was so bad I didn't think I could do it anymore, I told that to my oncologist and my pain doctor. If it wasn't for the fact I was expecting grandchildren, I don't know what I would have fought so hard to get help. - I was really thinking about just giving up. however, I had/have a fantastic counselor/therapist as well as great: myofascial massage therapist and many different acupuncturist have helped (so them3-4 times a week for years).
My Oncologist dismissed me for more than 6-7 years, even told me that she NEVER HEARD OF PEOPLE HAVING BONE PAIN OR CRAMPS, She was only concerned about me having HOT FLASHES and how I was handling them. I had an incident where I was screaming on her floor of the clinic (it was so bad that people came running into the room) the pain had been unbearable for 5 months. I was placed in a PET SCAN, nothing was found to answer my pain, however, I had a thyroid mass which turned out to be stage 3 Thyroid Cancer. The most interesting part of this is I had thyroid testing before my mastectomy and everything was normal. I believe I developed this cancer as a result of my immune system being so stressed, that I developed cancer.
Oh a Yeah this is HUGE: I was placed on medications that are RED BOX/Label meaning you should not take them while on Tamoxifen/Arimidex some of them are: Antidepressants, Seizure medication: Gabapentin/Topamax, Celebrex/Benadryl, Diazepam Morphine specific for pain medication and some other medications as well. it's written in the Tamoxifen literature that you do not mix these medications.
I know some will think that this is impossible, No one could have this much problems. I would agree, HOWEVER, If my doctor would have looked at the drug label before placing me on them this would not have happened. MOST IMPORTANTLY if they would have stopped the medication at the first adverse effect it would not have snowballed. (I had asked the doctor who prescribed those medications if he had ever treated a cancer patient on these medications they stated yes, later I found out they had not - which they had told other Nurse and practitioners in the clinic)
I did advocated for myself BUT my DOCTOR (ALL OF THEM) did not want to hear it.
My oncologist even was telling me I was too difficult for her and was thinking of dropping me until another Dr. diagnosed me with the WORST case of ADVERSE DRUG REACTION. They didn't educate me on any potential side effects except for possible hot flashes and pulmonary embolism.
Then they stated, "Oh, you didn't have a good reaction to being on Tamoxifen so we should take you off" I had just told them I had stopped two months prior.
They just placed me on medication to correct the side effects. NO ONE LOOKED ATTAMOXIFEN (That was the only constant medication during this entire period of time. I ASKED, they TOLD ME NO! IT COULDN'T BE. THEY NEVER HEARD OF ANYONE COMPLAINING OF BONE PAIN OR MUSCLE CRAMPS. They never went to this site, where they would have seen your comments, telling about your bone pain and other side effects.
I LOST MY JOB as a NURSE. I LOSS ALL MY RETIREMENT FUNDS.
I am in SEVERE EXCRUCIATING PAIN constantly - my medication does not bring my pain down pass an 8-9/10,
I HAVE SEVERE BONE LOSS - HAVE OSTEOPOROSIS.
All I want to do is to Please ask you to Beware ----Don't TURN OUT Like ME
I wish I would have known about this website. It is so helpful
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So, you have written on the Arimidex thread. Were you ever on Arimidex or Anastrozole? What was your diagnosis? How long were you on Tamoxifen?0
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1verypainful - so sorry to hear about SEs and conditions that should have been detected earlier. I hope you find relief from pain and other SEs. SEs are so variable as are DRs experiences/knowledge, but they absolutely listen. Instead of denying and dismissing a person's complaint that a given drug or cancer could be causing problems/SEs, they should at least consider what might be or if there is a different drug. My DR does listen, I've never felt dismisssed. I am taking brand name Arimidex and Ibrance, with some SEs. Brand name Arimidex much less SE than generic anastrozole. Have also taken Tamoxifen. The first time I took, would get occasional nasty cramp in calf, which could happen at any time. Bone scan shows some loss, which could be age related as well as drug. I am probably due for another bone scan in a few months, hopefully Arimidex has not robbed me.
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 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Clot suspected, Utra sound showed fluid, not clot.
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, stopped Tamoxifen.
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. Surgeon said PET scan measures activity, and since it was not cancerous, why the PET did not see it, but the CT did.
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I started taking anastrozole over a year ago. Ive done a hold for two weeks at one point in time for headache reasons they went away and when I started taking it again the headaches didn’t come back. In September I had an oopherectomy and my Onc seems to think the lack of estrogen is causing the joints in my fingers to hurt due to arthritis onset and lack of estrogen. I’ve had stiffness in my right hand( morning only) for about 2-3 months. I’ve also developed upper back pain on the left side (cancer side). My ONC ordered a chest CT to look at everything an didn’t see anything to be concerned about. I’m wondering if I should try switching to name brand Arimidex to see if that would help. Wanted your thoughts too. Thanks!
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Oncologist took me off anastrozole.
Dizziness, Hand stiffness, Sweating. No big deal. I knew this was Anastrozole.
Shortness of breathe, Nose and Chest Congestion, Cough, Headache, Weakness. I've also been taking an allergy pill with no change.
He said to stop taking the AI and let him know how I feel. It's been three days and no headache or dizziness. Still have cough, congestion, and short of breath. Thought I might have Coronavirus with no fever but he said no to testing and go to emergency room if my breathing gets worse.
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I just saw an interview with Ellen Degeneres and Pink, the singer, and Pink said she tested positive for Covid and she never had a fever.0
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whatjusthappened - persistent coughing. Several years ago I started taking lisinopril for BP. I wish I had told the DR immediately about the coughing. When I did, she said it was a SE for some people, and immediately switched me to a different drug. The coughing immediately stopped
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BlueGirlRedState, I'm glad you were able to get to the root of your cough quickly. I do know that most of the ace inhibitors can cause a cough, as can ARB's (angiotensin receptor blockers) for blood pressure, which I take. I've been on the medicine longer than I've had the cough though, so unless it's a new side effect, I doubt it's the main culprit. I tend to think that my cough may just be a cumulative thing- radiation, reflux, medicines, etc. Ironically, even the inhaler I use to help control the cough has a cough listed as a possible side effect.
Just out of curiosity, what class of BP drug did your doctor switch you to? A few months ago, I was switched to an ARB/diuretic combo because the ARB wasn't working by itself. I really don't like taking a diuretic, but my BP was really high. However, I've been exercising a lot this past month and it's amazing how much my BP has dropped. Sometimes I'll even get dizzy spells and I'll check it and it will be too low. I think I'm going to have to switch again.
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Hi Everyone,
I pray everyone is well during this very trying time. I had to come here for insight and experiences of others as I called my breast surgeon’s office today and was told that I may not be able to get an appointment or a referral for an ultrasound due to covid-19. I’m waiting to hear back tomorrow.
So, November 2019 five months ago I did my yearly mammogram in my left breast (right side mastectomy 2017). It was discovered by ultrasound that my left breast had a fibroadenoma and was found to be “more than likely benign” and I should return in six months for another ultrasound. Well, I made appointment to return in early March 2020 which was also cancelled. So, a few days ago I began to experience a bit of soreness/pain in this breast. I almost ignored it, but I remembered...wait you’re in menopause due a total hysterectomy June 2018. The pain is somewhat similar to what I used to experience during periods, but a bit more noticeable. Today I was experiencing more sharp pain and tenderness. I have also switched to aromasin in the last two months which has been no picnic. I thought Arimidex was bad, but this is itsnaughty cousin.Has anyone ever experienced breast pain due to AI’s?
Thanks everyone for your insight.
Stay safe in whichever state you live.
Humblepeace
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Hello,
I started on Arimidex over 2 weeks ago, but taking pill every other day. This week, Sunday, I started every day but had to skip today as I was up much of the night, hips are aching like mad(they do anyway, but it's worse right now) and the GERD has settled a little(taking Nexium now and it worked years ago very well) but I am not feeling like myself. Sluggish, just meh. Certainly, getting poor, less, disjointed sleep contributes but does this feeling of malaise eventually subside? I take two high blood pressure meds and one(metropolol) knocked me on my can 16 months ago, changed me from the Energizer Bunny, to a lazy-ish sloth. And I hate it. I am not 'myself'. I take the anastrozole in the morning...
Stay healthy and distant, everyone and thank you for any thoughts...counting down to May 11 lumpectomy and praying schedule goes forward...
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Toria,I had hip pain and and foot pain that eventually got better with time. I will say that I was on metaprolol for a month or so and it totally zapped my energy. The nurse told me that its purpose is to not let your heart rate go up so I felt like I was walking through quicksand. I switched meds and feel much better.
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toria1212 The joint aches and sluggishness got better for me after a few weeks, gradually, but definitely. I felt really quite okay by 2-3 months after starting my AI. I feel best when I get 1 hour of exercise (walking or working out), when I remember to drink a lot of water all day long, and when I don't sit for too long, and remember to get up and move.
I suspect that part of this "it takes awhile to feel better" thing is the body adjusting, part is the brain getting accustomed, and for me, when I got exercise going regularly, my joints were better supported by muscles and had less to complain about. For me, the AI is dehydrating. It's subtle, so I make myself drink water all day long, even when I'm not very thirsty, and that has helped a lot. As for the getting up and not sitting too long, the joint stiffness was shocking at first, and definitely has gotten better, perhaps due to all these reasons.
Sending good wishes for you to get the lumpectomy on schedule.
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thanks for the post Hikinglady!! I need to drink more water!! I started Anastrozole April 6. I do feel my joints or muscles to be more achey after sitting awhile. It is still manageable so far. Just walking down my stairs I feel and must look elderly. I get an hour of exercise before work, and additionally since my neighbor gave me their ping pong table, I get bouts of playing that with my 16 year old thru out the day.... phy-Ed for him!!! I am starting to sleep a little better at night.
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Red Box label warning. A few people have mentioned this and cautions with taking certain drug combinations. What is it and how do you know what combinations not to take? I given my DRs a list of Rxs, and supplements as well and have not been told not quit taking one or find an alternative because of drug interaction. I notice the the BP Rx bottle has both yellow and red, but nothing about drug interaction. Just dizziness, pregnancy, alcohol. The arimidex has a very skinny yellow to red bar on the bottom. Again pregnancy/breastfeeding warnings, nothing about drug interaction . The Ibrance, nothing on bottle, but with attached label, just take with food, breastfeeding.
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You can google a particular med for adverse reactions or ask your pharmacist to run it. 2 of my drs said I could take tumeric. I googled it, doesn’t play nice with Coumadin. I have history of leg & lung clots. Won’t take it. Sometimes we just have to do our own thing
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hi... i will be starting this drug in about 4 weeks. i am 35 yrs old.
any advice on what to take with it to combat any side effects? i am a runner and already have joint pain from that so i am scared
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berries - Is Anastrozole what they are starting you on? One quick bit of advice - Hope you will be fairly well recovered from your other treatments before starting any anti-hormonals. I did not start Anastrozole until one month after radiation ended.
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I started anastrozole the day after I finished radiation. I had no problems but I wasn't 35 either. I was 69. Berries have you had a hysterectomy or are you taking suppression drugs?
HUGS!
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BlueGirlRedState Thanks so much for the pharmacy site and SpooliesMom thanks for suggesting the manufacturer site!
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hi! i am on Lurpon for ovarian suppression, then will start amiridex.
maybe this is a dumb question, but why amiridex over other AIs? I am researching this and can't come up with a straight answer on why an MO will have their patient start on Amiridex over Letrozole or Fermera. I'm so confused!
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berries My MO started me on Anastrozole, which is a generic of Arimidex. It's been just fine for me now for 1.5 years so far. I asked him the same question---why this particular one? In his practice (over 20 years), he'd seen it be tolerated the best. Of course, the MO's want all of us to be living with the fewest side effects possible, which is correlated with staying on the AI and getting the cancer protection benefit. He made sure to tell me that everyone's different, and one person might tolerate one AI better than another, and so he was completely clear that if I had very difficult side effects, we'd try another option.
I felt kind of crappy at first. Tired, sluggish, achey. Gradually, over a few weeks, that all got better. I feel best when I drink a lot of water, and get 1 hour of good exercise each day.
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