Aromatase Inhibitors and joints

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crselby
crselby Member Posts: 441 Member
in Breast Cancer #1

Hi All.  I'm at that phase in treatment where I'm making the decision whether or not to take endocrine (hormone) therapy.  If I do, it will be an aromatase inhibitor (AI).  I had uterine polyps last time (6 years ago) with Tamoxifen.  Here's my question:   I know the most common side effects reported from AI use is "joint pain" (followed by "hot flashes"). Does anyone know if the AIs actually cause joint DAMAGE?  My oncologist could not say why the AIs cause joint pain except that they lower the amount of estrogen produced.  OK, I get that, but just how does lower estrogen affect joints?  And is it just a feeling of pain or are actual changes taking place in the joints?  If so, are those changes permanent?

Thanks for your info, if you have any.

 

~~Connie~~

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  • bethsbaby
    bethsbaby Member Posts: 61
    #2
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    AI and joint pain

    hi Connie,  I was on tamoxifen for 3 yrs then switched to Femara.  I did experience lots of aches and pains.  I stayed on it for about a year and couldn't stand it.  I was switched to aromasin (Exemestane). I took a month off before starting the Exemestane.  I have been on it for about 6 months and so far am tolerating it much better.  Hope this helps.  There are several AI drugs, so if one doesn't work get your dr to let you try another.  Good luck !  Lynne

  • tufi000
    tufi000 Member Posts: 745 Member
    #3
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    AIs

    I have been on Arimidex 12 yrs. The first 2 yrs I  had joint pain that gradually decreased but for some it doesn't go away.  I never had hot flashes but many do. There have not been any permanent effects but you have to take something for your bones.  You HAVE to! It does decrease your calcium stuff.  It also is known to have less side affects than tamoxifin. I am grateful for the Arimidex. Do what you feel is right for you. 

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #4
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    bethsbaby said:

    AI and joint pain

    hi Connie,  I was on tamoxifen for 3 yrs then switched to Femara.  I did experience lots of aches and pains.  I stayed on it for about a year and couldn't stand it.  I was switched to aromasin (Exemestane). I took a month off before starting the Exemestane.  I have been on it for about 6 months and so far am tolerating it much better.  Hope this helps.  There are several AI drugs, so if one doesn't work get your dr to let you try another.  Good luck !  Lynne

    Osteoporosis

    Is permanent  without medications (bisphosphonates) and I don't know how long they make you stay on them.  I developed real live osteoporosis on Arimidex (was osteopenic before), but I did not experience joint pain.  I'm now on Tamoxifen (I'm without a uterus).  My bone densitiy has increased on Tamoxifen and I have absolutely no side effects.  I don't know what the difference in recurrence rates is but i know "they" say the AIs are "better".  Whatever that means.  I have aches and pains, but I'm 68.  I exercise regularly and I think it makes a difference.  Now it's cold and my hips hurt sometimes, but I really think that it's age related. 

    I am a believer in endocrine therapy but I almost didn't do it at first because I was so frightened that I might have debilitating joint pain.  Finally I realized that I would never know if I had joint pains or not unless I tried it and if I did, I'd either switch or stop all together.    Thing is, you don't know whether that 50% decrease in recurrence rate will make you safe or not.  But I know this:  a very good friend of mine has a recurrence from hell in her bones.  She took Arimidex for 7 years.  Yes, Seven.  Three years later the beast is back. Yes, that is at 10 years.  She was early stage, node negative, but she was HER-2 positive.     Did the Arimidex keep those cells from growing for 7 years and when she stopped they had a picnic?  Of course, no one knows and I did not pay any attention to any of this until my ordeal.  I'm really not interested in having a distant recurrence or even a local recurrence.  I found I tolerated both the arimidex and now tamoxifen well.  I've been one of them for 5 years and have been encouraged to stay on for 10.  Not sure I want to do that, but will take each year one at a time for now. 

    Remember, you wont' know about any joint pain unless you give it a try.  And, I don't know if it effects the joints permanently or not.  I do know it causes osteoporosis.

    Suzanne 

  • crselby
    crselby Member Posts: 441 Member
    #5
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    Thanks

    Thanks, all.  Guess I'll get started on it and see.  I had only DCIS, both this time and 6 years ago.  But I guess I should do this.  Thing is, it's such a crap shoot as to whether or not there will be benefit and at the same time, it's not an innocuous therapy; it HAS side effects of several kinds.  It's not just a matter of whether the patient can "tolerate" them...  the drug is having a very strong effect on your body's systems no matter how you feel.

    Takin' the plunge and asking for the prescription today...

    ~~Connie~~

  • kbird
    kbird Member Posts: 3
    #6
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    crselby said:

    Thanks

    Thanks, all.  Guess I'll get started on it and see.  I had only DCIS, both this time and 6 years ago.  But I guess I should do this.  Thing is, it's such a crap shoot as to whether or not there will be benefit and at the same time, it's not an innocuous therapy; it HAS side effects of several kinds.  It's not just a matter of whether the patient can "tolerate" them...  the drug is having a very strong effect on your body's systems no matter how you feel.

    Takin' the plunge and asking for the prescription today...

    ~~Connie~~

    Arimidex and joint pain

    I found the information below regarding  Arimidex and joint pain.  I am of the same mind as you, Connie, regarding taking the anti-hormonal drugs.  My onco wants me to take Armimidex.  I'm currently waiting for the Oncotype Dx to come back before making the decision.  Does anyone have experience with integrative oncology? 

    "Aromatase inhibitor medications can cause joint or muscle aches and pains, which can interfere with quality of life. Be sure to talk to your oncology team if you develop this side effect. This pain is caused mainly by swelling in the joints, which is best treated by a non-steroidal anti-inflammatory (NSAID), such as ibuprofen, naprosen and celecoxib. Be sure to discuss which pain relievers you can safely take with your oncology team, as these are not without their own side effects. Studies have shown that acupuncture and gentle stretching and exercise may also help reduce this pain."  -- OncoLink.org

  • LouisaP
    LouisaP Member Posts: 62
    #7
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    kbird said:

    Arimidex and joint pain

    I found the information below regarding  Arimidex and joint pain.  I am of the same mind as you, Connie, regarding taking the anti-hormonal drugs.  My onco wants me to take Armimidex.  I'm currently waiting for the Oncotype Dx to come back before making the decision.  Does anyone have experience with integrative oncology? 

    "Aromatase inhibitor medications can cause joint or muscle aches and pains, which can interfere with quality of life. Be sure to talk to your oncology team if you develop this side effect. This pain is caused mainly by swelling in the joints, which is best treated by a non-steroidal anti-inflammatory (NSAID), such as ibuprofen, naprosen and celecoxib. Be sure to discuss which pain relievers you can safely take with your oncology team, as these are not without their own side effects. Studies have shown that acupuncture and gentle stretching and exercise may also help reduce this pain."  -- OncoLink.org

    I am really suffering with my

    I am really suffering with my thumb. I was on Arimidex. After a few months I started getting finger pain, swollen joints & stiffness starting in my left thumb. I went off for a couple months & started Aromasin last month. My fingers have improved but my left thumb is actually worse. I wake up with trigger finger symptoms. I run warm water over hands & massage & stretch. My thumb sticks & it takes a while. But it hurts a lot all the time. Sometimes severe. I am on Oxyxcontin & oxycodone for chronic pain problems related to severe sciatica & failed back surgeries. It doesn't touch the thumb & hand pains.

     

    My appointment is next week & I'm going to discuss anti-imflammatories. The problem is I have had surgery for GERD(acid reflux) & have a precancerous condition, Barretts esophagitis that I have had burned out a couple of times & is under control now. I take acid reducers for life. Yes I know I have too much going on lol. Yeah I really needed cancer too. Anyway, I'm going to have to try anti-inflammatories because I want to stay on the AI because they say it's better than Tamoxifin in my case. This doesn't mean you will have any kind of side effects. Mine may be so severe because of my other issues. I'd try them because they have been show to cut down reoccurance. I did cure my carpal tunnel almost 10 years ago with accupuncture so I am going to try it for my thumb. The only reason I haven't is because of the money. I am on disability due to back & there's really no extra left over at the end of the month. There is an accupuncture school by me & I'll try that. If that doesn't help I'll go to an experienced practitioner. The students do have to consult with the teachers about any treatments & during treatment. The teachers come by to observe so I have high hopes.

     

    Thanks for letting me vent while telling you of my experience. Don't let it scare you away. Only show that AI that have been shown to lower your risks of metastasis in cases like yours may be worth some pain.

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