HAS ANYONE STOPPED USING FEMARA, ARIMIDEX ETC BECAUSE OF SIDE EFFECTS

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toninasky
toninasky Member Posts: 102
edited March 2014 in Breast Cancer #1
I am having such a bad time with Femara. Stopped for 3 weeks because of leg pain, and went back on in late August. Now the muscle pain in my chest and back and legs is just a bit much. Sometimes I think I am having a heart attack. I stop taking the pill and the muscle pains get better. Seeing my onc later this month. These drugs weren't around 20 years ago, and people did survive. I am just wanting whatever I have left in life to be a quality life. I am 65 and taking this drug is just bringing me down. My sugar is up, my cholesterol is up and my weight is higher than it has ever been. I am depressed. Any responses would be appreciated.

Toni

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  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
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    Haven't started. Bone density issues. At 52, and surgically menopausal, I am on Tamoxifen for 2 years with virtually no side effects. Then on to the aromatase inhibitors like arimidex. Ask your doctor about Tamoxifen. This is what everyone took before the new generation of drugs.

    Hugs, Kathi
  • Skybuf
    Skybuf Member Posts: 143
    #3
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    Hi toninasky, I take Arimidex, I know about the side effects but docs don't seem to know just what IS causing my problems, neck/back pain that's crippling, knee and feet problems, chest pain, now seeing dr for possible kidney infection/or back pain, who knows. When your on BP meds and cholesterol (Lipitor) meds, who knows which is the culprit. I do believe Arimidex can casue side effects but like I said before, My Oncologist and Surgeon say it's a "Must" for me to ward off any cells that might attach the hormeone receptors......or whatever they call them. I have to take it, she said it's a "Blocker" for any remaining or growing ca cells....so I say it's only for 5 yrs, then I'm off it all!!!!!! I pray a lot, ask God to help me thru it and heal my body, it works!
  • cruf
    cruf Member Posts: 908
    #4
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    KathiM said:

    Haven't started. Bone density issues. At 52, and surgically menopausal, I am on Tamoxifen for 2 years with virtually no side effects. Then on to the aromatase inhibitors like arimidex. Ask your doctor about Tamoxifen. This is what everyone took before the new generation of drugs.

    Hugs, Kathi

    Hi! I was on Tamoxifen for 5 years with min. problems. I then was put on Femara and after 8 mos, decided my quality of life wasn't great due to pain in feet, hands high cholesterol, dry eyes, wt. gain, thinning hair etc... I was switched to Aromasin and all my symptoms got worse and I move like a 90 year old but I continued for 1.5 years. My MD isn't sure the symptoms are all from the meds but, most people on them have the same complaints. I stayed on it for peace of mind but now it's 7 years since surgery so We decided it was time for me to stop. I'm hoping for the pain to go away. Have been off for 1 1/2 weeks. Has anybody stopped taking them? If so, if you had joint pain, did it go away and if so, how long did it take? Thanks. HUGS!! Cathy
  • roxanne53
    roxanne53 Member Posts: 154
    #5
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    Skybuf said:

    Hi toninasky, I take Arimidex, I know about the side effects but docs don't seem to know just what IS causing my problems, neck/back pain that's crippling, knee and feet problems, chest pain, now seeing dr for possible kidney infection/or back pain, who knows. When your on BP meds and cholesterol (Lipitor) meds, who knows which is the culprit. I do believe Arimidex can casue side effects but like I said before, My Oncologist and Surgeon say it's a "Must" for me to ward off any cells that might attach the hormeone receptors......or whatever they call them. I have to take it, she said it's a "Blocker" for any remaining or growing ca cells....so I say it's only for 5 yrs, then I'm off it all!!!!!! I pray a lot, ask God to help me thru it and heal my body, it works!

    Hello!
    I also take Arimidex and have since 2003. I am also of the "must" catagory for this drug. I am on other medications besides for other things that can contribute to the side effects. I had taken fosomax for bone density issues. I am no longer on that and side effects have been much better for me. The fosomax was one of my major contributors to bone and joint pains.
    Try checking out your other meds you can easily get rid of before going off the Arimidex. That is what I have been doing.
    I know the weight is big and I am not at all fond of that side effect. At this time, it has been so hard to get rid of any weight. Depression comes into play there for me too. I am not used to carrying this kind of weight either.

    Like Skybuf I pray and offer it up as best I can.
    Things have gotten better. And do get better.

    Hang in there Toninasky! We are in this together.
    Hugs roxanne53
  • Susan956
    Susan956 Member Posts: 510
    #6
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    I stopped Arimedex and tried Femara... ugh and am now on Arimosin. It is a cousin and for me has fewer sides. I also found out that Ambien which I was taking to sleep was causing my feet and legs to swell. So if you are taking a sleeping med, you might want to try switching that to see if it is causing it. It is not a primary side effect... but at least for me it was the culprit. Almost quit taking the Aromasin before I figured out that Ambien was the culprit.

    I have also found out that I feel better when I try to be most active. I have taken up a new interest.... dancing... and it has been a God Send... there are a lot of singles that are my friends and we got out and dance one night each weekend.. and take classes another night... It has made a hugh difference in the way I feel about life...

    Take Care.. God Bless....

    Susan
  • mrsbetty2
    mrsbetty2 Member Posts: 24
    #7
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    Thank you for writing about your side effects. I thought i was the only one. I started Arimidex in March. Have weight gain and the muscle and bone pain. Sometimes i feel like 90 instead of 60. My balance is off also. But i went to my reg. Dr. and after blood work she found my colestrol was slightly high,so she put me on Lipitor. That i read has its own set of side effects. I go to my Onc. the end of the month and going to ask her if the Arimidex is causing everything to rise. Before i had the breast cancer i never took a pill only for vitamins and an sometimes pills for pain due to arthritis. I will continue to take the pills because i don't want the cancer back. I try to walk and exercise and then i get the hot flashes big time. Just glad to know we are all in this fight together and will continue to pray for everyone. We will beat this disease. God Bless you all.
  • roxanne53
    roxanne53 Member Posts: 154
    #8
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    mrsbetty2 said:

    Thank you for writing about your side effects. I thought i was the only one. I started Arimidex in March. Have weight gain and the muscle and bone pain. Sometimes i feel like 90 instead of 60. My balance is off also. But i went to my reg. Dr. and after blood work she found my colestrol was slightly high,so she put me on Lipitor. That i read has its own set of side effects. I go to my Onc. the end of the month and going to ask her if the Arimidex is causing everything to rise. Before i had the breast cancer i never took a pill only for vitamins and an sometimes pills for pain due to arthritis. I will continue to take the pills because i don't want the cancer back. I try to walk and exercise and then i get the hot flashes big time. Just glad to know we are all in this fight together and will continue to pray for everyone. We will beat this disease. God Bless you all.

    Hi there
    Sometimes I do feel more like 90 instead of 50+ and balance can be off, too.
    Before cancer I really was not on any meds either and now it is my first and last thing I do in the day. I do not want cancer back either.

    I have arthritis too. so that contributes to this side effects stuff too. Sometimes can make it more painful. HOt flashes is my issue too. I burn from the inside outward. like a combustable person. Then sweaty and damp all the time. As long as we have to be a self furnace, I sure wish it would burn the fat right out too. ewwwwe.
    Here we are and still moving forward. Heat and all.
    Take it easy and hugs
    roxanne53
  • iammomof3
    iammomof3 Member Posts: 4
    #9
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    Hi Toni, Hi All!
    This is my first time posting here and when I saw your femara question, I had to respond.
    Oh my gosh, I am so glad I stopped the femara. I was on it four months. The first two months were fine, but by the third month the pain became unbearable. The femara was killing me, or at least it felt like it was. The back pain was so excruciating even pain meds didn't help much. So my oncologist switched me to a monthly injection of faslodex instead. The faslodex makes me slightly nauseas but I prefer that to crippling pain. It is working out much better for me and I feel like I have a life again! If I were you, I would talk to your oncologist about possibly finding a different med to take. Quality of life is important!
    Hugs
  • Pegjoy
    Pegjoy Member Posts: 5
    #10
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    Would like to stop Femara
    I have been on Femara for about 4 years now. I have had TERRIBLE joint problems, headaches, weight gain, thinning hair, DEPRESSION, etc., just to name a few - (however, I am post menopausal due to chemo 10 years ago and am now 50 years old), BUT!!!!! I started having most of these problems AFTER starting the Femara. My oncologist argues that Femara is "okay" and tells me to continue on it, but my QUALITY of life is terrible. I have recently been diagnosed with bipolar disease (probably because of chemo??). Anyway, I can barely walk some days and have broken my arm (I have BIG bones and have always been healthy...milk drinker, exercise, etc.). Also, I have torn the meniscus in BOTH knees (just had surgery on one and now they are taking about REPLACEMENTS, and remember, I am ONLY 50 years old!) I also have arthritis everywhere! I FULLY BELIEVE IT IS THE FEMARA. I would really like to know if any of you out there are having these same symptoms. Please feel free to email me @ pegdeal@graceba.net, as I do not have time to get on the site after working all day. I think more studies need to be done on this drug. I am almost ready to take a chance and stop taking it.

    Joy
  • Texylin
    Texylin Member Posts: 43
    #11
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    Stopped Femara
    I was on femara for a little over a year and had all the side effects that everyone else has had. Joint and muscle pain in feet, knees and hands. Low back pain, hair loss and depression too. High cholesterol also. I have been off it for about two weeks now, because my cancer has returned. If you go to this site http://askapatient.com/viewrating.asp?drug=20726&name=FEMARA you can find out just how many people suffer with this med. I thought I was going crazy with all the side effects until I found the patient site. I know its too soon to tell, but none of the pain has gone away yet and from what I've read, I not sure it will. I only stayed on it because of the fear of the cancer returning.

    Linda
  • creampuff91344
    creampuff91344 Member Posts: 988
    #12
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    Femara
    I have read most of your discussions regarding Femara, and as a fellow "cancer" survivor, I would like to know how you are doing now. I also am contemplating stopping the drug because of all of the side effects, and am curious as to how you are feeling after being off of it for a period of time. This is truly a hard decision to make, but I feel like my quality of life is more important than quantity. Most of my symptoms are related to muscle and joint pain, but I also have issues with my female organs,,,i.e. ovaries, breast tenderness, vaginal discharge, etc. Please let me hear back from you. HUGS

    Judy
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #13
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    So sorry you're having such
    So sorry you're having such a rough time. Cabbott has posted some really good and informative articles on the relationship between a Vitamin D deficiency and muscle/joint pain.
    It would be good to get that checked. Someone mentioned Tamoxifen, and that might be an alternative route for you. What really interests me is the Faslodex that was mentioned.
    Maybe a good alternative for those of us who don't tolerate the others.

    I wonder how it did in the studies and I wonder if you can get it if you don't have mets.

    Best of luck to you all
    jan
  • creampuff91344
    creampuff91344 Member Posts: 988
    #14
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    Femara
    Toni,

    I have been reading the CSN website with all of the comments regarding Femara, and it seems like everyone taking the drug is having real problems. I am 64 years old, never been sick a day in my life until diagnoised with breast cancer in January 2008. Have been through chemo/radiation and now am on Femara. The drug is really taking its toll on me, especially over the past three weeks. Started taking it two weeks before going through my first radiation treatment, so thought that the side effects may be related to radiation....never thought the drug would be so bad. I have been taking it for about 90 days, and have had enough of feeling like someone has run over me with a huge truck. I have just about decided to permanently get off of Femara, and if the doctor can't suggest anything else, will go without taking anything. Quality of life is important to me, and can't see spending the next five years feeling like I do now. Hope you are feeling better. Hugs to all.

    Judy
  • mgm42
    mgm42 Member Posts: 491 Member
    #15
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    Arimidex
    I'm 66 and have been on Arimidex for a little more than 5 months. The only side effect has been occasional achiness and stiffness in my wrists, shoulders and lower back. Tylenol helps to relieve some of the discomfort and my oncologist has prescribed hydrocondone for pain. I only use that at night when I can't sleep because of the achiness. But, my side effects are NOT debilitating. My quality of life is not compromised. Maybe I'm just fortunate, but maybe Arimidex may be an option for you. Talk with your oncologist - and if she/he switches you, ask for free samples. See how you do before paying big bucks for a prescription. Medicare part D amounts to diddle squat when it comes to cancer related drugs. Good luck. Marilynn
  • mgm42
    mgm42 Member Posts: 491 Member
    #16
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    Arimidex
    I'm 66 and have been on Arimidex for a little more than 5 months. The only side effect has been occasional achiness and stiffness in my wrists, shoulders and lower back. Tylenol helps to relieve some of the discomfort and my oncologist has prescribed hydrocondone for pain. I only use that at night when I can't sleep because of the achiness. But, my side effects are NOT debilitating. My quality of life is not compromised. Maybe I'm just fortunate, but maybe Arimidex may be an option for you. Talk with your oncologist - and if she/he switches you, ask for free samples. See how you do before paying big bucks for a prescription. Medicare part D amounts to diddle squat when it comes to cancer related drugs. Good luck. Marilynn
  • jasperjoan
    jasperjoan Member Posts: 4
    #17
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    arimidex
    I began my breast cancer journey about a year ago with a "suspicious" spot in my mammogram. I believe I started Arimidex sometime in Feb. 2008, after my lumpectomy and visit with oncologist. I have hot flashes from it, but they aren't as bad as my menopausal ones were. I have had some lower back pain, and when that was checked, it was artheritis in the lower back...near my tail bone. My chol. hasn't been checked since I started this, but my other bloodwork is ok. I lost weight with the trauma of radiation, and have been able to keep it off while taking the arimidex.
    I am a member of Leslie Sansone's WalkClub. I have several of her walking CDs and walk in home between 1-5 miles a day...sometimes I don't get my daily walk in due to other things going on in my life. I really enjoy these walks as I can do them anywhere, anytime of day or night. Leslie is so encouraging and upbeat. You can join the WalkClub from her website or buy her CDs at box stores, or online.
    I have a family history of osteoporsis, and have osteopenia. I am 60 yrs. old. I have no history of breast cancer. I started the walking program several years ago to combat the osteopenia and was doing 5 miles a day before cancer. I haven't gotten back to doing the walks regularly, or for that many miles. I have done 4 miles recently. All research that I have read confirms that walking is one of (if not the best) exercise that you can do for general health and especially for bone health. Check out the Cooper Clinic in TX.

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