Side effects with Anastrozole/Arimidex

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pp729
pp729 Member Posts: 135

Hi all.  My mom started on Anastrozole about 6 weeks ago.  She has a tingling sensation in her arm and hand.  (She does have an issue with a "trigger finger" on that same hand, but this feeling is very different that the symptoms of TF). 

Has anyone experienced this taking this aromatase inhibitor?  I have asked her to call her onc to check in on it. 

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Comments

  • steelrose
    steelrose Member Posts: 3,798
    edited April 2011

    Hi...

    I've been on Anastrozole for a few months, and I'm experiencing the tingling in both hands and feet now. My hand is tingling as I type this! I haven't asked my oncologist about it yet, as it just started. I thought maybe I was sleeping in a funny position because my hands were asleep when I woke up. Just wanted you to know that your mom's not alone. It does sound like it's related to the drug.  

    Maybe someone has more info.?

    Rose.

  • pp729
    pp729 Member Posts: 135
    edited April 2011

    Thanks steelrose.  Checked the website for Anastrozole and this is a possible side effect.  My mom called the oncs office -- spoke to his nurse who did not feel it is related to the drug.  Suggested she take Aleve.  Will continue to monitor.

  • nora_az
    nora_az Member Posts: 720
    edited April 2011

    I am on Anastrozole, in fact I just started it a week ago last Thursday. I've yet to have any side effects. I am keeping my finger's crossed.

    I am wondering why some people go on Tamoxifen and other's on Anastrozole. Is there a clear reason?

  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2011

    The tingling feeling is called neuropathy and mine started while on radiation then of course on Arimidex and Femara it continued and after stopping both those drugs it continues to this day - mostly in my feet and not annoying anymore because you can get used to anything - I've tried lots of drugs including neurontin which don't work they just make you feel drugged - I think walking, running or any exercise helps out so does getting back to a normal living pattern - you just don't have time to think about it.

    Sandy

  • Marcidouglas
    Marcidouglas Member Posts: 44
    edited June 2011

    Ok the verdict is in for me, YES it does make you gain weight!!!!  I gained 25 pounds on chemo & radiation which ended 10-1-2010 and I have been trying really hard to lose weight since my reconstruction surgery on March 16, 2011.  I am walking/running everyday for 2 miles and either the Wii fit or a toning class at the gym and have not been able to lose anything.  About the time I would lose 3-4 pounds a couple days later  I would weight more than the 3-4 pounds.  I have been having joint & bone pain along with the swelling & weight gain so my OC told me to go off it for 2 weeks and start on Arimidex because the generic was causing the same symptoms in other people taking it.  I am 10 days off Anastrozole and I have lost 9 pounds in that 10 day period, so YES it does make you gain weight.  I feels so much better and I am glad to know it wasn't me because I have been working so hard at cutting out my sugars, white carbs and adding more fresh frutis & veggies.  I am so excited but still dread going on Arimidex.  I have been on Tamoxifen & had to stop because of unbearable leg pain and now Anastrozole, and I have a very high pain tolerance.  I hope they can give me something that I can stand.

  • hollyann
    hollyann Member Posts: 2,992
    edited June 2011

    I have been on Arimidex for 2 1/2 years now....i have tingling in my hands and feet......I had started out on Tamoxifen but had severe side effects, including weight gain, severe joint pain and the worst of all tumors in my uterus and on my ovaries which resulted in a total radical hysterectomy only 8 months after starting it.......Luckily the tumors were benign.....My OB/GYN onc thought it was cancer and had me and my entire family scared witless.......

    I then went on Femara for about 6 months but again I had the severe joint pain...This time it was so bad I had a hard time getting up from a seated potition and also had trouble getting around when getting out of bed.....I could not stand for long periods of time either......And my job requires me to stand a minimum of 4 hours at a time.....I take an antiinflamamtory 1 to 2 times a day now and that really helps with any soreness I may encounter........

    Since being on the Arimidex i have more mobility, less stiffness and actually have managed to lose 20 pounds...I still have really bad leg and foot pain at night but it is tolerable now...I wish you all much luck with these meds.........

    Edited to add i still have the tingling in hands and feet.....Hopefully when I stop in december of 2012 it will go away.......

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    I took Femara for 2 months and had HORRIBLE se's. I'm on my 4th day of Arimidex and I'm hoping for the best. My mom took it for 5 yrs. and had no se's. Fingers crossed!

  • LoriLarson
    LoriLarson Member Posts: 1
    edited October 2011

    I have been on arimidex for 10 months, I am 53 years old but feel like I am 90.  I just stopped taking it and have an appointment with my oncologist in 30 days to re-evaluate.  I am scared to stop taking since my cancer was hormone positive.  I was premenopausel and still having periods up until the day my ovaries were removed 11 months ago.  I was diagnosed in July of 2010 and had a bi-lateral mastectomy in October of 2010 followed by the removal of my ovaries and several breast reconstruction surgeries.  Before all of this I was very fit and active but now I can hardly get out of bed in the morning my body aches so bad.  So I just stopped taking the arimidex and hope and pray that I am doing the right thing.  Any comments from anyone?

  • otter
    otter Member Posts: 6,099
    edited October 2011

    Lori, this is a very old thread.  No one has posted here since July, more than 4 months ago.  I think you'll find things much more active if you check the "Hormonal Therapy" forum. There's a thread there on Arimidex that has plenty of information.

    As for the question you've asked, I have no good answer.  Aches and pains are pretty common with Arimidex and the other aromatase inhibitors.  They seem to be worse for some women than for others.  I am sorry to hear you're having such a hard time with it.

    But, I doubt anyone on these boards can tell you whether you're "doing the right thing" by stopping taking the drug.  For some of us, it's the only thing between us and a recurrence of our cancer.

    Please try the "Hormonal Therapy" forum for more information about Arimidex side effects and how to deal with them.

    otter

  • Islgl10
    Islgl10 Member Posts: 1
    edited February 2012

    I have been on anastrozole for close to 2 years now. Have been experiencing arms and hands falling asleep, tingling etc. but when I put my arms into a different position it fades. My onc suggested I try the real Arimidex as I've been on the generic, and things became pronounced. I was on it for 6 weeks and I noticed the minor aches in my shoulders became excrcuciating so that I couldn't sleep.

    I've developed a trigger finger in my right thumb and the sleeping hands and arms are worse.

    I saw an orthopaedic for the shoulder who sent me to a physical therapist after diagnosing rotator cufft tendonitis. I'm in a neurology office as I write this awaiting an EMG test to determine if the nerve conductivity is normally functioning in regard to the tingling, the chiropractor that I see thinks I have pinched nerves however I will still need to take MRI's to confirm that there is no bone deterioration in the cervical disc area and the hand specialist that I need to see will tell me what to do regarding the trigger finger. An MRI will also be taken on the shoulder.

    I am a fitness instructor and physical education teacher who is becoming depressed that my quality of life is now compromised.

    I was deliriously over joyed that the chemo and radiation was completed and started the anastrozole with zero knowledge regarding what horrific side effect lay ahead.

    I was told by a complimentary medicine doctor who by the way prescribed numerous supplements to support the bone loss issue, that I should leave no stone unturned when investigating thes new physical ailments.

    I am convinced that the anastrozole has caused all the above. I was an active 56 year old athletic woman before the diagnosis and up until 6 months ago. It seems the side effects peak after a year or so give or take a few months.

    I haven't done a push up in weeks and Am inconsistently in the gym due to appointments!!!!!!

    I have an appointment to discuss all the above with the oncologist at the end of the month and hopefully he'll allow tamoxifen which his PA claims has no bone, muscle tendon pain.

    I'll try one more drug, if things don't improve I may have to take my chances.

    So sad.

  • mommarch
    mommarch Member Posts: 584
    edited February 2012

    I started on the Anastrozole on Dec. 8, 2011, I had so much pain I could not stand it, I would have to take a pain pill to get rest at night and my ONC did not like that I had bad depression and I am not a depressed person.  Then on Jan. 17th they started me on the generic for Amorasin (sp)  that also caused terrible pain and burning pain in my back.  I am to start Tamoxifin on Feb. 27th.  If I have problems with that I am not taking anything else.

  • emzeee
    emzeee Member Posts: 2
    edited March 2012

    I started Anstrozole about 5 weeks ago, I have tingling and burning in my arms & legs, I have severe body pain, ache in my hips and joints and I swell in my hands and feet. I quit taking it almost 2 weeks ago. I could not stand the pain any more. I am 32 yr single mom of 3 young kids, I hurt just as bad as I did during Chemo. Being stage IIIa I don't want my cancer to ever come back but I could not stand the extremely painful side effects.

  • emzeee
    emzeee Member Posts: 2
    edited March 2012

    I am so sorry, I feel as if I have been robbed of my life after cancer...I hate the side effects are horrible and it is hard to explain to others the pain that we feel daily. I hope we both feel better soon!

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2012

    emzeee, the main Breastcancer.org site's information about side effects of aromatase inhibitors includes this:

     "If you're experiencing side effects from taking one aromatase inhibitor medicine, tell your doctor. You may be able to take a different medicine. Arimidex and Femara have similar chemical structures, while Aromasin has a different structure."

    You'll find more support and members' personal experiences in the Hormonal Therapy - Before, During and After forum.

  • cjjj84
    cjjj84 Member Posts: 7
    edited April 2012

    To Isgl10...I have a similiar problem. I have been taking Anastrozole for about 2 years, and my symptoms are pretty minor compared to some I have read. However, for me they are a problem because I am an aikido instructor and practitioner. The situation was compounded because when I discovered I had breast cancer I was recovering from a severe foot break that necessitated my being off my foot for about 4 months. I am experiencing muscle weakness and stiffness, and knee pain. I haven't been able to get up from a roll with any ease for two years, and rolling is getting harder and harder. I am jogging, but just can't get any speed up. The fact that I am 68 doesn't help, because my doctors think it's amazing I can do this stuff at all. Unfortunately, I know most of it is side effects.

     Unfortunately, I can't get any info about training or running on Anastrozole, because almost all the google results for those terms give you sites on taking steriods!

    I completely understand your exerience. I would be interested in knowing if you had good results switching medications, and how you are doing now.

  • mommarch
    mommarch Member Posts: 584
    edited April 2012

    I posted on 2/24 and I started taking Tamoxifen on Mar. 1.  I have been on it for two months and really have no problems with it.  I went to my FP and they put me on cymbolta and ambien and I am feeling much better.  I had not had a good nights sleep in a year.  I keep trying to not take the ambien some nights but I sleep for about an hour and then I am awake until 3:00 AM .  Dr. says at this time in my life I need it.  I am only taking 5 mg, I wake up refreshed and ready to go.  I take one cymbolta a day and it has really helped.  I did not realize I was probably depressed until one day I could not quit crying and when you go to work and break down that is not good. 

    I still wear out real easy, so after I work 5 hours a day I go home and stretch out and relax and that helps.

    emzee, I told my ONC that the AL meds were worse than chemo.

  • pupmom
    pupmom Member Posts: 5,068
    edited April 2012

    Yes, this is the only SE I"ve had from Aromasin. It sometimes becomes very painful at night but I feel slight tingling all through the day. I've heard Glucosamine can help so I will try that. It's not something I cannot live with, so I will stick with the drug as long as I need to.

  • emmapoo
    emmapoo Member Posts: 1
    edited May 2012

    i am 55 yrs old and finished a 5 year course of Tamoxifin with no side effects.   I started Anastrozole since Jan 2012. Quickly I experienced joint pain everywhere. My doctor felt the symtoms were not severe enough to stop the meds. I went from a active, vivacious women to aches and pains daily. It is a chore to get out of my bed daily. Now in May, I have body rash on my arms, legs and torso. They areas are red and very bumpy. My ONC and dermatologist felt it is medicine related and had me stop the drug. I was told my skin ailment may get worse before it gets better. I am trying to search for images of this skin reaction on the internet but can't seem to find it. My joint pain still persist.  Wondering when things will get better. It scares me to be on no meds since breast cancer runs in my family. I just lost my sister 2 years ago to breast cancer.

  • lucybooz
    lucybooz Member Posts: 1
    edited July 2012

    I've been on Anastrazole (1mg) since May, 2011.  I have noticed the aches, hot flashes, and hair loss, but my concern is the discomfort - not really pain - in the breast that did NOT have the cancer.  I've read where one side effect of Anastazole is breast tenderness, but I guess I'm wondering if this should be since it's been over a year that I've been taking it.  I'm examining that breast daily but feel nothing out of the ordinary. It's real easy to "panic".   Has anyone else had breast tenderness while taking Anastrazole?  I had my last mammogram in February and all was well, but yet I worry.

  • lorithelion
    lorithelion Member Posts: 17
    edited August 2012

    I first was put on anastrozole. I was already on an antidepressant. Within 6 weeks ,I was so depressed that ,not only was I crying all the time,but I couldn't hardly get out of bed.I went to my MD because I thought that my antiDepressant was not working.He increased the AD and put me on abilify which only made things worse. I was feeling a sense of doom by that time. I went back to the MD to reqest a referral to a Psych MD to manage my AD meds. He gave me a file of referrals and told me that his clinic did not make referrals to mental health specialists and that I was on my own. I could never get a referral. Finally, I was so desperate that I showed up at my oncologist's office in tears. They allowed me to see the triage nurse. I told her that I had changed ADs several times and came to the conclusion that it was the AI that was causing this severe rx. She told me to stop taking the AI and to keep my appointment with my MO. When I finally saw the MO, I was still a wreck. He got me a referral to a Psych MD. and would see me in a month to discuss another AI. In the mean time I saw the psych MD. and he put me on effexor. By that time I was feeling better. When I saw the MO the next time, he said I should  start aromisin in another month. I said that I did not want to get depressed again. He said that I should work with him and try it because it had a different chemical structure. I started it April of 2012. By the end of 6 weeks I had started to break down crying uncontrolably at work. I was also irritable and snapping at people. My manager wanted me to take a leave of absence. I realized that I was depressed again. Also, my knees and thumb joints began to ache. I Called the MO. He told me to stop the aromisin and see him in a month. Within 2 days of stopping it I felt so much better. When I finally saw MO he said I could try femara, but he left the choice up to me. I said reluctantly that I would try it.Soon after I saw the psych MD. He told me that if I was not completley over the depression, I should not start the femara because the more times I got depressed, the harder it would be to reverse it. I relayed this to the MO and he said it was ok to wait until the depression was totally resolved to try the Femora. That's where I am now,still weighing my options.All these Doctors say stay on track with the AI's .One can managed the side effects. I ask, Have they ever experienced the hell of depression, or the horrible joint pain and fatigue.I bet they would be more empathetic if they had experienced this living hell. What is the use of reducing the recurrence rate if one's life becomes so miserable on these AI's?

  • allyannea
    allyannea Member Posts: 20
    edited September 2012
    lorithelion, you are not alone!  I have stuggled on the hormonal treatments (Aromasin, Faslodex) with mood swings and major depression.  I was on Femara for a short time, but the cancer progressed.  But I did not notice the same mood problems that I had on the other drugs, FWIW.
  • Crystala
    Crystala Member Posts: 1
    edited December 2012

    I am up at 6 am on a Saturday morning because I couldn't sleep due to tingling, numbness and a achiness in my hands as well as reflux. I looked up arimidex side effects, thinking it might explain the persistence and frequency of the reflux symptom, and was shocked to find the tingling and numbness you all described in the first entrie i read!!

    I have had both symptoms (tingling AND reflux) in the past, now both are worse. I had assumed the numbness and throbbing in my hands (almost exclusively while in bed or while knitting) was positional, caused by tension, hunching,etc. I have been undergoing radiation and the discomfort of the position seemed to have triggered some cervical or spinal pressure. I had been looking forward to the end of radiation (December 18) for relief, but now am not so sure! It could be the arimidex, I guess. I will continue to try other therapies - stretching, Pilates, massage, a "Mother Earth" shoulder trigger point pillow - to try for relief.

  • BBs2
    BBs2 Member Posts: 2
    edited May 2013

    I began taking Anastrazole (Arimidex) in Sept. 2012.  It was a progressive joint pain in my knees, then shoulders, elbows, ankles.  By March I had a hard time getting in and out of bed, walking, no stairs, no kneeling, etc.  I was getting fairly disabled.  I was desperate.  I heard about a brown seaweed compound called LIMU.  It contains a supernutrient called Fucoidan.  I researched all over internet and found only positive comments.  It is $150 for two months of liquid supply.  Started taking it and in a few weeks I was about 95% better.  My knees still get a bit sore if I use them too much, but I can take grandkids for long walks, go up and down stairs, get on knees and play with them, etc.  Back to my old self!  This stuff is great.  It has totally changed my life.  My therapy is no longer a problem.  I don't even know I am taking the pill every day.  Read about it for yourself.

    Edited by Mods to remove the link to an "online marketing system" email address

  • CarolHutton
    CarolHutton Member Posts: 3
    edited July 2013

    I know it has been awhile since you posted this but I wanted to get with you on it.  I am a 71 yr old and have been on anastrozole for 14 months.   My left leg started bothering me several months ago and in May it got so bad that I have to walk with a limp.  My leg will not straighten out fully.  Not the knee.  No pain to touch, but standing or walking the tendon or muscle is so tight that the pain is extreme.  I have always had a high tollerence for pain.  Before this med and my cancer (had a double mastectomy in 2012) I at 70 yrs old took no meds was in excellent health, and still working.  I can barely stand up now.  I just went off the meds 10 days ago.  I am slightly better.  I will wait to see how much improvement I have over time.

  • CarolHutton
    CarolHutton Member Posts: 3
    edited July 2013

    I know it has been awhile since you posted this but I wanted to get with you on it.  I am a 71 yr old and have been on anastrozole for 14 months.   My left leg started bothering me several months ago and in May it got so bad that I have to walk with a limp.  My leg will not straighten out fully.  Not the knee.  No pain to touch, but standing or walking the tendon or muscle is so tight that the pain is extreme.  I have always had a high tollerence for pain.  Before this med and my cancer (had a double mastectomy in 2012) I at 70 yrs old took no meds was in excellent health, and still working.  I can barely stand up now.  I just went off the meds 10 days ago.  I am slightly better.  I will wait to see how much improvement I have over time.

  • JennyD
    JennyD Member Posts: 1
    edited August 2013

    I started Anastrozole about 15 months ago. I am a 55 year old preschool teacher that has recently had surgery for torn minuscus on both knees. My legs hurt so badly now that I have trouble even walking. I was diagnosed with stage 2 breast cancer on Sept. 16, 2011. I had a partial mastectomy, 10 rounds of brachytherapy radiation, and 8 chemo treatments. I thought I was through the worse part but now I can barely walk. Interesting to find out others have my symptoms. Calling oncologist tomorrow!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    I've been taking Arimidex for more than 8 years. I have ZERO side effects from it. And I'm still NED.

  • ulurudog
    ulurudog Member Posts: 3
    edited September 2013

    It took close to a month after stoping Anastrozole to regain use of my left leg, to be able to straighten it without pain, to actually be able to sleep a whole night through.  I switched to Arimidex, thinking it may have been the additivies in the generic that were causing the problem (since my oncologist nurse said my left leg pain was not associated with the drug, in her vast 5 years of experience); I lasted 1 1/2 months and then was back to where I had started - so stopped taking the Arimidex and within a week was back to normal.  This was 1 1/2 month ago.  I decided to re-start Arimidex because I'm not on anything at the moment, and lasted one day - I expect to be back to normal in a couple of days.  Just depends on how much is in your system.  And by "normal" I mean there is ALWAYS some pain, but not so debilitating.  I'm curious as to whether these nasty side effects ever go away.

  • ulurudog
    ulurudog Member Posts: 3
    edited September 2013

    I seem to recall some discussion earlier this year about lingering side effects of Anastrozole/Arimidex after stopping the drug.  Does anyone have any experience to share? 

  • Kheng
    Kheng Member Posts: 26
    edited May 2014

    I am on Arimidex since 19 September 2012, bone pain can be addressed by taking 600 mg-calcium caltrate or citrate with 1000 iu vitamin D3 and 1500 mg of glucosamine sulphate a day (if suffer triggered finger and stiffness of fingers)

    Morning blues and nervousness are my side effects, and I balance it with goat milk and egg as breakfast

    The blues hit when I stop the goat milk 

    Nutrition works better than on drugs like lexapro that cause nausea and make you more depressed and loss of appetite

    To address loss of appetite, I took 500mg lingzhi cracked spores powder, then brisk walk and drink lots of water for half to one hour before dinner

    It takes 2 weeks to be effective

    To fight fatigue, start your day with a lemon juice, a tablespoon of blackstrap molasses, add water to 300 ml, then add one tablespoon of barley green and drink with a straw, half an hour before breakfast

    Do not give up, if depression is bad, stop for a week and replace with indole-3-carbinol which will suppress estrogens

    I take Arimidex before bedtime and alternate with insole-3-carbinol the next day on trial for one bottle due to nervousness and morning blues

    Will share the effects in June

    Abstain from chicken, soya products, deep fried or grilled foods

    When in poor appetite, cook porridge with vegetables and fish plus egg then add Marmite

    All cruciferous vegetables like endives, broccoli, cauliflower, mustard green, brussel sprouts are anti-estrogen

    Abstain from alfafa, beansprouts, tofu, promegranate, red cherry, etc

    Supplements like yunzhi (PSK or turkey tail) helps to boost up immune system

    Note :- Lingzhi cracked spores are proven to treat ER+ breast cancer by blocking the MCF-7 pathway of the cells (*Refer to NIH website or search ganoderma lucidum and breast cancer)

    Wearing long socks and walking shoes protect you from catching cold too and keep you active Walk at least half an hour a day

    Take TCM herbs as complementary if your country has TCM oncologist

    Do not eat ginseng, cordyceps, dong quai, birdnest, snowfungus, wai sun, burdock if you are estrogen positib

    DX Aug 2011, 3.2cm DCIS, Stage 3A, Grade 3, ER+, ACX2, Paclitaxel X 12 weekly complement with TCM herbs, lingzhi cracked spores and alternate with yunzhi

    Read Ezekiel 37 and pray for strength, wisdom and peace and joy

    Shalom!

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