Arimidex SE's - did anyone switch AI's?

sbmly53
sbmly53 Member Posts: 1,522

coming up on taking Arimidex (anastrazole) for 5 years. The side effects of  taking it, joint pain - especially feet and ankles, are becoming unbearable. Not horrific, just feel like enough is enough already. Onc says it is suggested that 10 years may be better. 

I have a friend who is being switched to Aromasin. Anyone on this? How are you doing? We're you switched from Arimidex or Femera?

I am doing well with BC, dancing with NED and wonder if I should just quit griping and keep taking Arimidex or seek to change.

 

thank you my dear friends!

 

Sue

Comments

  • cabbott
    cabbott Member Posts: 1,039 Member
    Arimidex and pain

    Have you had your Vitamin D3 level checked lately? I had foot pain with aromasin for 2 years (tried orthodics and support shoes and ouched daily) when a nurse practictioner suggested i check out my D3 level. I did it but was sure it was fine. After all, I drank milk with D, took a multi with D, did yard work outside in the sunshine, and ate right. Like many cancer survivors however, it was very low, clinically so. After two days on prescription strength D3, the pain totally disappeared in my feet. Now I am on the stuff you buy at Walmart. I was able to finish all 5 years and the last 3 were pain-free.

    Some people have more of a problem with joint pain. I'm not sure what test is out there that could predict if you are one of those people. But just in case it is as easy to correct as my problem was, you might at least ask your oncologist for the D3 test.

  • Josie21
    Josie21 Member Posts: 382 Member
    Arimidex SE

    Hi Sue.

    I was originally on Tamoxifen, then Arimidex after my hysterectomy. Arimidex kicked my butt!!  Joint pain, trigger fingers and just feeling miserable. Then switched to Aromasin and did much, much better on that. After my five years were up this year, my doctor put me back on Tamoxifen because I did so well on that to begin with and it can help your bones which took a hit while on the Aromasin. Ask your doctor, maybe you can try Tamoxifen for the extra 5 years. As you know, they all have side effects, but I don't get that horrible joint pain on Tamoxifen. 

    Hugs,

    Ginny

  • New Flower
    New Flower Member Posts: 4,294
    Josie21 said:

    Arimidex SE

    Hi Sue.

    I was originally on Tamoxifen, then Arimidex after my hysterectomy. Arimidex kicked my butt!!  Joint pain, trigger fingers and just feeling miserable. Then switched to Aromasin and did much, much better on that. After my five years were up this year, my doctor put me back on Tamoxifen because I did so well on that to begin with and it can help your bones which took a hit while on the Aromasin. Ask your doctor, maybe you can try Tamoxifen for the extra 5 years. As you know, they all have side effects, but I don't get that horrible joint pain on Tamoxifen. 

    Hugs,

    Ginny

    Hi Sue

    I am taking Aromasin along with other medications. To me skin dryness is the most noticible side effect. I do have some bone pains, however I do not count it for Aromasin. i also was on Femara for 3 months and it was ok. I have tried them all, and generic version of Arimidex was the most difficult to me. Form what i read continue with antiestrogen should be beneficial.

    Good luck and keep us posted.

  • sbmly53
    sbmly53 Member Posts: 1,522
    Thank you!

    have appts for physical with PCP and with Onc to discuss switching. Will request labs for thyroid and D. 

    Should have results by mid February.

     

    Sue

  • camul
    camul Member Posts: 2,537
    sbmly53 said:

    Thank you!

    have appts for physical with PCP and with Onc to discuss switching. Will request labs for thyroid and D. 

    Should have results by mid February.

     

    Sue

    yes from Femara to Aromasin
    Pain in my legs and all muscles was unbearable. I kept thinking it would get better. Was only on it for 7weeks. The only real se of Aromasin has been some dry mouth. Could hardly function on Femara. My onco would not do Arimadex when I couldnt handle Femara said arimidex is the brother to Femara and having se on one would most likely be no different than the other. Have been on Aro.ison for 10 months now. Was first on Tamoxifen but it was toxic to my system.
    Best od luck to you! Hope Aromason works well for you.
    Carol
  • ppurdin
    ppurdin Member Posts: 1,181
    Arimedex

    I just got off this med.I had joint pain and trigger finger horrible .I stopped taking my cholesterol med. and found out that was causing most of the pain.I feel like a different person now.good luck.

  • aisling8
    aisling8 Member Posts: 1,627 Member
    ppurdin said:

    Arimedex

    I just got off this med.I had joint pain and trigger finger horrible .I stopped taking my cholesterol med. and found out that was causing most of the pain.I feel like a different person now.good luck.

    Didn't switch, but possibly going off

    My six-month onc appointment was yesterday and she said she didn't recommend I stay on Arimidex past five years. She said there are no long-term studies showing the benefits past five and that I'm low risk (yay) and because of the osteoporosis, she'd suggest I stop after five years. I'm one of the lucky ones, though, except for the osteoporosis I don't have side effects and somehow popping that little white pill has made me feel safer than not popping a little white pill. I have very mixed feelings about stopping.

    xoxo

    Victoria

  • ppurdin
    ppurdin Member Posts: 1,181
    cabbott said:

    Arimidex and pain

    Have you had your Vitamin D3 level checked lately? I had foot pain with aromasin for 2 years (tried orthodics and support shoes and ouched daily) when a nurse practictioner suggested i check out my D3 level. I did it but was sure it was fine. After all, I drank milk with D, took a multi with D, did yard work outside in the sunshine, and ate right. Like many cancer survivors however, it was very low, clinically so. After two days on prescription strength D3, the pain totally disappeared in my feet. Now I am on the stuff you buy at Walmart. I was able to finish all 5 years and the last 3 were pain-free.

    Some people have more of a problem with joint pain. I'm not sure what test is out there that could predict if you are one of those people. But just in case it is as easy to correct as my problem was, you might at least ask your oncologist for the D3 test.

    Arimedex

    While taking this med. I had joint pain so bad it got to where getting up from chair was hard.i went through nerve testing.And was told it was fibermyalga .I had taken Pravistan for years also.I stopped taking the Pravistin and feel like a new person.so it wasn't the arimedex.I am off of both now.Cholestrol meds. Are hard on the joints.

  • ppurdin
    ppurdin Member Posts: 1,181
    aisling8 said:

    Didn't switch, but possibly going off

    My six-month onc appointment was yesterday and she said she didn't recommend I stay on Arimidex past five years. She said there are no long-term studies showing the benefits past five and that I'm low risk (yay) and because of the osteoporosis, she'd suggest I stop after five years. I'm one of the lucky ones, though, except for the osteoporosis I don't have side effects and somehow popping that little white pill has made me feel safer than not popping a little white pill. I have very mixed feelings about stopping.

    xoxo

    Victoria

    Stopped taking arimedex

    We are in the same place with arimedex.My Dr. Also said 5yrs. Was enough and I could stop.I stopped last thurs. And yes it is scary not to take it.But nice to.Like you I have mixed feelings.I was so excited about stopping the Arimedex.then as it got closer I started thinking but I am not doing anything to fight reacurance.

  • aisling8
    aisling8 Member Posts: 1,627 Member
    ppurdin said:

    Stopped taking arimedex

    We are in the same place with arimedex.My Dr. Also said 5yrs. Was enough and I could stop.I stopped last thurs. And yes it is scary not to take it.But nice to.Like you I have mixed feelings.I was so excited about stopping the Arimedex.then as it got closer I started thinking but I am not doing anything to fight reacurance.

    exactly

    Yes, not preventing a recurrance is what has me scared, but the osteoporosis has me scared, too. Arimidex took me from osteopenia to full-blown osteoporosis. My five years is up end of May. 

    Keep us posted, Pat, on how you're doing and feeling off of Arimidex. As I recall, you said you had bad side effects so going off hopefully will provide relief.

    xoxo

    Victoria

  • ppurdin
    ppurdin Member Posts: 1,181
    aisling8 said:

    exactly

    Yes, not preventing a recurrance is what has me scared, but the osteoporosis has me scared, too. Arimidex took me from osteopenia to full-blown osteoporosis. My five years is up end of May. 

    Keep us posted, Pat, on how you're doing and feeling off of Arimidex. As I recall, you said you had bad side effects so going off hopefully will provide relief.

    xoxo

    Victoria

    Side effects

    Yes I will keep you posted.said it takes 8 days to get out of system.that would be another day.

  • valleygirl12
    valleygirl12 Member Posts: 3
    Arimidex vs. Femara

    Hi- I was diagnosed with stage 1A breast cancer 6 months ago. Had a single mastectomy to remove 1.1 cm tumor with clear margins. ONC prescribed Arimidex. I took it for 5 weeks before the joint and muscle pain became unbearable. I also became depressed and had bouts of vertigo. I almost quit the AI treatment completely. I was convinced by ONC to give Femara a try. I have taken it only 2 days and am hoping for less side effects. I am 61, don't drink or smoke, exercise a lot. Has anyone gone through the same? I am weighing quality of life vs. the benefits of an AI.  Thanks!

  • duck1255
    duck1255 Member Posts: 40

    Arimidex vs. Femara

    Hi- I was diagnosed with stage 1A breast cancer 6 months ago. Had a single mastectomy to remove 1.1 cm tumor with clear margins. ONC prescribed Arimidex. I took it for 5 weeks before the joint and muscle pain became unbearable. I also became depressed and had bouts of vertigo. I almost quit the AI treatment completely. I was convinced by ONC to give Femara a try. I have taken it only 2 days and am hoping for less side effects. I am 61, don't drink or smoke, exercise a lot. Has anyone gone through the same? I am weighing quality of life vs. the benefits of an AI.  Thanks!

    Femara

    I have been taking Femara for 7 months and haven't had any problem with side effects. It also is working my last scans show improvement

  • valleygirl12
    valleygirl12 Member Posts: 3
    duck1255 said:

    Femara

    I have been taking Femara for 7 months and haven't had any problem with side effects. It also is working my last scans show improvement

    Femara

    That's encouraging. I hope I am as lucky as you. I have been taking it a week now, So far, no side effects.

  • valleygirl12
    valleygirl12 Member Posts: 3
    Josie21 said:

    Arimidex SE

    Hi Sue.

    I was originally on Tamoxifen, then Arimidex after my hysterectomy. Arimidex kicked my butt!!  Joint pain, trigger fingers and just feeling miserable. Then switched to Aromasin and did much, much better on that. After my five years were up this year, my doctor put me back on Tamoxifen because I did so well on that to begin with and it can help your bones which took a hit while on the Aromasin. Ask your doctor, maybe you can try Tamoxifen for the extra 5 years. As you know, they all have side effects, but I don't get that horrible joint pain on Tamoxifen. 

    Hugs,

    Ginny

    Arimidex, Femara and Aromasin

    Hi Josie 21!

    Would you say Aromasin was better with less SE for you than Arimidex and Femara?  I was diagnosed 8 months ago with stage 1, grade 2 breast cancer. I lasted on Arimidex for 5 weeks and the side effects became unbearable. Joint pain, vertigo, muscle aches. I waited 3 weeks and then switched to Fermara. It was even worse. I have no desire to take Tamoxifen. I may give Aromasin a try. When did the SE appear and what were they for you? I'm glad you made it 5 years with AI therapy. I wish you the best of luck. Any info you can provide would really be appreciated!

  • sbmly53
    sbmly53 Member Posts: 1,522

    Femara

    That's encouraging. I hope I am as lucky as you. I have been taking it a week now, So far, no side effects.

    I switched

    to Aromasin. Still have a little foot and ankle pain, but so much better than Arimidex.

    i am also 61 and have fibromyalgia. No exercise over the winter and needs to lose some weight - again. Looking forward to Spring and walking.

     

    Sue

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    sbmly53 said:

    I switched

    to Aromasin. Still have a little foot and ankle pain, but so much better than Arimidex.

    i am also 61 and have fibromyalgia. No exercise over the winter and needs to lose some weight - again. Looking forward to Spring and walking.

     

    Sue

    I switched to Tamoxifen

    The reason I switched, tho, was to determine if Armidex was contributing to my lack of hair which never came back after chemo (well, some of it did, just not very much).    I was, however, osteopenic and the last dexascan showed progression with some actual osteoporosis.  I think the aromatase inhibitors are supposed to be "better" than SERMs in terms of preventing recurrence or developing another ER+ breast cancer, but not by all that much.  My onc explained the difference on how they work to me and said she would not be comfortable with me not being on any hormone therapy, so she wanted to try Tamoxifen (which is just fine for postmenopausal women, the AIs don't work with premenopausal women, Tamoxifen is fine for either).  She also told me Tamoxifen would be good for my bones - and it has been.  My most recent dexascan has improved.   I already had endometrial cancer and had had a hysterectomy, so did not have the worry about endometrial cancer from Tamoxifen. 

    I did not think I had any side effects on Arimidex, but after being off of it for a while, I didn't seem to have so much joint pain which I had attributed to ageing.  So I guess I did have some SE's, including osteoporosis. 

    so - for me, the change to Tamoxifen has been a good one, albeit for different reasons than most.  I haven't grown any more hair, but my bones have improved without the need for a bisphosphonate (for now anyway) and I feel good, and am still NED.  I'll be finishing up hormone therapy next year (I think) and I am looking forward to that.

    Suzanne