Arimidex.... The other white pill

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CherylinOhio
CherylinOhio Member Posts: 623
edited June 2014 in Stage III Breast Cancer

SO I started on arimidex this past January, switching from tamoxifen which I was on for a short year. After the ovaries came out I got the AI.  I have had just about every SE known to this AI.  The worst is the achiness.  I have muscle pain around my ribs and keep wondering if it is mets to the bones?  My onc says no it is muscle pain. This is the opposite side of my mx.  I wonder if the muscle on the good side are making up for the muscles that were messed with when I had my LD flap surgery last year. Anyone else experience bone or muscle pain? 

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  • diana50
    diana50 Member Posts: 2,134
    edited May 2013

    Both arimidex and femara often times give you muscle, joint general aches. I was on arimidex for 6 years and said enough is enough. 4 years later met to spine. Currently on femara (letrozole) and has clear PET in jan. These drugs work if you are estrogen positive. But not fun to take that is for sure.

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  • kar123
    kar123 Member Posts: 273
    edited May 2013

    Yes, I also have the muscle, bone, and joint aches from arimidex (anastrozole).  It was really bad about 2 years out and then it sort of got a little better.  I'm not sure if I got used to it or the SE's subsided a bit.  It is still not a great feeling.  I'll be 43 and sometimes feel 83, but if I have to live with it I will.  I also tried aromasin, but I had severe mood swings with that drug and for me, the lesser of the 2 evils was physical pain rather than emotional.

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  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited May 2013

    Diana,

    I am so glad your PET scan was negative.  I hope the femora continues to work well. 

    I have tremendous joint stiffness with letrozole.  I walk like I have cerebral palsy at times.  I try to exercise everyday which helps.  I wish I didn't have to take this medication, but I'm terrified not to.

    Elizabeth

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  • diana50
    diana50 Member Posts: 2,134
    edited May 2013

    I think if you are estrogen positive you make the decision

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited May 2013

    Glad to hear about your PET scan!! Congrats!!  I will stay on it as long as I can, even with the SE's.  I have some discomfort around my ribs on unaffected side so am always wondering if that discomfort is from AI or mets. Onc thinks im ok  but I will probably ask him for an xray but have no insurance due to being recently laid off. I try to stretch each day and that helps. Also have noticed that my right hand, on affected side, is very still in moring and at times it can get numb.

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited May 2013

    Arimidex was very hard for me, I took it 6 mths, I felt terrible and yes I ached everywhere.  I felt like a 90 yr old woman.  I switched to Aromasin, it still has SE but is much easier and I can tolerate them better.

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  • chrishat
    chrishat Member Posts: 89
    edited May 2013

    i have been taking arimidex for three years...i also had my ovaries removed and began arimidex right away, at age 45. it was a really hard adjustment! when i first woke up in the morning my knees would barely bend...i would walk around stiff legged. but i can say that for me, as i finish up year three, the side effects have subsided quite a bit. i'm still achier than i was but it seems like my body has adjusted...it is defintely easier now. hang in there! i also take celebrex now, which my onc prescribed because it is a COX 2 inhibitor (think i have that right?)and may help prevent BC recurrence. anyway i think it also helps with the general aches and pains.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited May 2013

    I started this AI in January 2013 and have a lot or aches.  I am especially concerned about my unaffected side around the back of my ribs. Of course I want a bone scan or at the very least an xray. I can't tell if its bone pain or muscular. Does mets to the bone hurt? I have read that a lot of women do not feel pain and others do. This is more of an ache and not constant. I try to stretch my legs before I go to bed and then when I get up along with my back.  I am very active as I have horses and they keep me very busy. The hot flashes are also awful!! I am starting to feel like I am not going to make it to my five years.... oh why oh why is this nasty beast still around??

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  • SweetCaroline2
    SweetCaroline2 Member Posts: 72
    edited June 2013

    I started on Arimidex at the end of January and my joints are so stiff and achy, I (also) feel like a  90 year old woman. My hands and feet swell and when I get up in the morning, I can hardly stand up, my feet are so painful. I take tiny, shuffling steps until my joints loosen up. I have found that the piroxicam (an NSAID) that I was already taking for my knee arthritis (old ski injury) makes the pain better. The achy joints ( with piroxicam) are better than the sharp joint pains I get when I do not take the piroxicam. Perhaps you could ask your doctor if an NSAID would help your pain.  I also take a couple of extra-strength tylenol at bedtime to allow me to get to sleep and a couple more if I wake up feeling achy during the night. Chemo was not that bad for me- the Arimidex is almost as bad as chemo was. I know that the Arimidex really improves my chances of living cancer-free and so I will keep on taking it. 

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  • karen1956
    karen1956 Member Posts: 6,503
    edited June 2013

    I had horrid, horrid joint pain on Arimidex and developed bilateral carpel tunnel syndrome within months after starting it....had surgery on one wrist.....when I stopped it and went on tamox the CTS went away in the other wrist...tried all the AI's....took Aromasin last and also had awful side effects....endured 3 1/2 years on AI's till I finally came to my senses and stopped them...that was 3+ years ago and thankfully I'm still NED.

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited June 2013

    Anyone experience bone pain? Specifically rib pain? I am not sure if my pain is bone or muscle. I am seeing my onc tomorrow, against his wishes, but hey it's my money. I am not due to see him until August but I am concerned about the achiness in my rib. Other than that, I feel about 90 in the am, if I sit too long I am achy. I try to stretch at night and in the morning when I am in the shower. I will endure and keep taking it for as long as I am allowed if it keeps me NED.

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  • roseamy
    roseamy Member Posts: 29
    edited June 2013

    Hi,

    I have experienced rib pain in oneside and I too also was worried, this was on the opposite side to my ld recon and I had a bone scan it showed all was ok I was also experiencg other symptons such as enlarged lymphs in my neck but all ok with these as well.

    My onc said it was probably muscular and may have been the muscles on one side making up for and trying to balance out the other side which is now missing the ld muscle.

    I have experienced bone pain as well and though both were different aches/pain if it worries you then talk with someone. I ache all over some days from the tablets and feel like an old lady. 

    Hope all is well. xx

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  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited July 2013

    I saw my onc a couple weeks ago, asked for blood work and it came back fine. He said same its muscular. Its gone now, it seems to come and go, its not really a pain so much as an ache.  If i sit longer than a few minutes when I get up I feel like I am 100!!! sheesh.... oh well as long as it works!!

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