Arimidex after 5 years, permanent damages?

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dalycity
dalycity Member Posts: 248
edited September 2016 in Hormonal Therapy - Before, During, and After

Two months ago, I finished 5 years Arimidex. However, my hands are still claw-like and I still have trigger-fingers, as well as various muscle cramps.

 Does anyone have any permanent damages or permanent side effects? I have not been able to find the answer doing research. I understand that I must wait, like 6 months, to see what happens after the drug leaves my body. But I wonder what your experience has been after taking Arimidex for 5 years; do your joints ever get back to normal?

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  • Medigal
    Medigal Member Posts: 1,412
    edited January 2012

    I have taken Arimidex for almost 9 years and soon I will be ending it after I finish last RX.  I had arthritis before Arimidex so I have no idea if Arimidex aggravated it or not.  My Onc is stopping it because my last bone density showed some bone deterioration and it has caused me pain in a "personal" area which I use Replens for.  He says the affects of the drug stays with us for another five years so I wonder if that means your joint pains will still be with you during that time.  Maybe you should ask your Onc about this.  I have read reports from other ladies who said after a few months off the drug they felt much better.  However, they did not take it for the full 5 years.  You and I have drowned our systems with this drug for years so I have no idea what we are in for after quitting.  I will be checking this thread to see what other posters tell you since this is also a concern of mine.  Thanks for posting.

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  • dalycity
    dalycity Member Posts: 248
    edited January 2012

    Medigal:

    I don't have an Onc, I am followed by my surgeon. He had said that my joints will feel better after stopping, but I couldn't get a detailed answer from him.

    My friend's Onc told her last week that there's a very wide range of responses to the side effects and that since Arimidex is so new, there's not a lot of data on it. Arimidex has been around since at least 1995. I have read that the drug must completely leave our bodies, maybe a year, before many symptoms are gone. Well, I guess I have to wait.Good luck.

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  • sflow
    sflow Member Posts: 297
    edited January 2012

    I am on the countdown--I finish 5 years of Arimidex at the end of January--that's 6 days from now.  Although I fear not having any more meds, I am looking forward to getting rid of some side effects and maybe some weight.  I am on weight watchers and hope getting off the Arimidex will help me even more in my weight loss journey. 

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2012

    are any of you gals going on Evista for bone strengthening once you are off?

    Curious what side effects evista would bring :(

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  • sflow
    sflow Member Posts: 297
    edited January 2012

    I have been on it for the full 5 yrs that I have been on Arimidex and probably plan to stay on it for a while. 

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  • deborye
    deborye Member Posts: 7,002
    edited January 2012

    I will be done Arimidex 7/26/12.  I tolerated it well until the about a year ago, maybe more.  My shoulders, hips and muscles ache and I don't like taking a lot of Tylenol or Advil.  I developed a saddle bone on my foot near the big toe knuckle and a bump on the toe next to the big toe on the same foot and my toe will not straighten out.  My CT scan I had in Nov noted degeneration of the osseos skeleton on the spine yet my bone dense test came out normal.???????????????  Could be Arimidex related, who knows?

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  • dalycity
    dalycity Member Posts: 248
    edited January 2012

    Medigal: My bone density was fine, maybe because I have been running for over 30 years. I called AstraZeneca yesterday. They don't seem to know any more than what's on their website. She told me to check with my doc regarding side effects. I said how can my doc know more than the drug company, who made the drug.

    JO-5: Thank you for your encouragement. I did have my Vit D level checked. The doc said 85% of her patients do not have enough Vit D. I now take Vit D and calcium.

    Deborye: I was doing fine on Arimidex till the end of my 2nd year on it. Then I developed body muscle aches and joint problems in my hands. I also had frequent heart palpitations during my last year on Arimidex. I was hooked up to the Halter monitor for 24 hours and did an echocardiagram and doc said there's nothing wrong with my heart. I believe Arimidex has all kinds of side effects. But if I had to do again, I would still take Arimidex for 5 years because cancer scares me!

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  • dbrader
    dbrader Member Posts: 9
    edited August 2012

    I just joined this site.  I finished 5 years of Arimidex on June 7th of this year.  Throughout the 5 years, I have had  intense hot flashes and night sweats every hour to hour and a half.  I was told by my oncologist that within 3 - 4 weeks they should be abating.  I have, however, seen absolutely no relief yet, even though it has now been 12 weeks.  I am becoming very discouraged.  Was his "3 - 4 weeks" unrealistic, or am I just an anomaly? 

     Hoping for some encouragement that I will get back to normal.  I really, really want to wear flannel nightgowns and sleep through the night.  I think it will take months to "catch up" on all the years of broken and lost sleep!!!

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  • CSM
    CSM Member Posts: 2
    edited June 2013

    I am a five year stage 1 invasive breast cancer survivor,  and just came off Amimidex this month.    I wake up all night long with terrible leg and foot cramps.  During the evening I get hand and finger cramps.   I have knots on the bones of my knuckles and they look like hands of an elderly woman with arthritis. My second toe swelled,  and has a knot on the top and won't straighten out.   My hips hurt so bad that turning over in bed was extremely painful.   Yes, it has its side effects.   

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2013

    I finished my last pill in September. Just this month I can say that I have finally started sleeping better (not great, but I didn't sleep great before it either), but better, I pretty much lived on sleeping pills for 5 years & now haven't taken one since May, so that was 8 months between the time I was done and the time that resolved. Some of the achy stuff/flashes etc. might just be because we are 5 years older, so unless a problem improves when you're done, it is hard to tell....is it arimedex related or is it getting older? CSM, those symptoms could get better with time, or they could be plain old arthritis too. Here is a home remedy I've shared elsewhere on the boards. Both my mother and aunt used it for arthritis and it worked for them. Take a box of golden raisins, put them in a jar and soak them in gin for two weeks in the fridge. Then eat 8 raisins a day. It produces a natural cortisone effect. My mom's fingers were getting bent & this recipe straightened them out again. Worth a try!

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  • CSM
    CSM Member Posts: 2
    edited June 2013

    Thanks for the reply (ruthbru).  I will have to try the raisin and gin recipe !   Glad you are finally sleeping a little better.   My oncologist said the achy bones should get better with time.   Curious of how long it take to get the Arimidex out of the body ?    I know it's deminished my harmones and I have no desire for sex.  Does anyone have changes in their private parts ?   

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited July 2013

    I just found this on one of BCO's main pages, Dr. W. is BCO main medical consultant & is answering a question about Als beyond 5 years.

    Brian Wojciechowski, M.D. says:            

    We cannot yet be sure for postmenopausal women if 10 years of an aromatase inhibitor is better than 5. Those studies are still ongoing. I think we will know by the time your 5 years are up, though. Some have suggested putting women on aromatase inhibitors for 10 years at this point anyway, but I don’t think that’s a good idea given the side effects of the drugs, most notably osteoporosis. For now, the standard of care for postmenopausal women starting hormone therapy is 5 years

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2013

    I started in Jan 2010. I just started getting achy this spring. Onc says that time frame is unusual. I want at least 6 months off or off for good in Jan. 15.

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  • Iceni777
    Iceni777 Member Posts: 4
    edited March 2014

    I took Arimidex for 6 years . that was 5 years ago, and my hands are a lot more flexible now, but some days are worse than others. I guess it's arthritis too.Best wishes.

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  • Iceni777
    Iceni777 Member Posts: 4
    edited March 2014

    I have the same thing. I believe they are called Hebridean nodes, though my present dr. says it's just arthritis. Arimidex has bad side effects. I was on it for 6 years and had terrible side effects.

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  • Iceni777
    Iceni777 Member Posts: 4
    edited March 2014

    Oh dear believe me they will fade and not be so intrusive, but it's 5 years since I stopped taking Arimidex, and I still get hot flashes and night sweats but not as often . It is a terrible drug.

    I also have resistant hypertension, and I'm beginning to think that Arimidex has done some permanent damage. I am taking 9 different pills for high BP and still it goes up, through the night. Does anyone else have this problem. I am really curious to know.

    Happy thoughts and best wishes to all.

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  • Iceni777
    Iceni777 Member Posts: 4
    edited March 2014

    I took it for 6 years and had nothing but ill health. It is now 5 years since my last dose and I don't   think I shall ever be as I was before. I have carpel tunnel like symptoms in my hands and arthritis in my hand s plus aches and pains,and high BP. I exercise as much possible but still get very tired, my magnesium is always low. No One admits to permanent damage but it's there. I was told that my joints would go back to normal but after 5 years they never have.  Just have to keep smiling and plodding on. Don't let it get you down, be kind to yourself and remember  everyone reacts differently. so think positive!

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  • pbb
    pbb Member Posts: 2
    edited September 2016

    I started taking arimidex in March 2015. Within a few months I noticed I was having vaginal dryness. I started using over the counter lubricants. They helped for awhile but soon were not enough. I went to the ob/gyn but all the medications contained estrogen so I could not take them. Now I am as dry as dust and sex is very painful. My sex drive has also diminished but I do not know if it is because of the arimidex or I am worried about the pain. I am supposed to take arimidex another 3 1/3 years but I am seriously considering stopping now. I have read comments about other side effects like joint pain and sleeplessness stopping but none about my problem. Does anyone know if the dryness and pain during sex are permanent?

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Hi Pbb-

    We want to welcome you to our community here at BCO, and direct you to one of our threads about sex lives during and after breast cancer. It's called I Want My MOJO Back!, and there is tons of info there on what other members have experienced, and what they've tried (with success and without) to fight some of the effects cancer and treatments can have on your sex life: https://community.breastcancer.org/forum/150/topic....

    Hope this helps!

    The Mods

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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited September 2016

    pbb this post has been inactive for some time. You will find more active threads here:

    https://community.breastcancer.org/forum/150/topic...

    https://community.breastcancer.org/forum/150/topic...

    Vaginal dryness and atrophy are problems that many on AI's experience.

    I use Organic Virgin Coconut Oil at least twice a day and find it helps.

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