Aromatase Inhibitors

HapB
HapB Member Posts: 527

I have been prescribed Femara, and I had to stop taking it after a few weeks due to excruciating pain in my lower spine and an inability to walk, sit, drive  or get in and out of a chair. I was totally incapacitated.  I have not had the chance to speak woth the MO yet, as she was not in last week.  I want to take an AI as  am strongly triple positive. 

I would appreciate any input on various AI’s. Is one easier than the others? 

 

Comments

  • Dianne Wilburn
    Dianne Wilburn Member Posts: 6
    edited October 2017 #2
    I took Letrozole

    I took Letrozole for 5.5 years. I forget which AI I started, but it was too much. The Letrozole was not great. I said to myself everytime I took it, "I hate this ****." But I did it. I went off Letrozole in February. My mammograms were fine til that point. Now I am dealing with watching a suspicious area. Anyway, that being said, everytime I would read the stats about not taking an AI, I stayed on the Letrozole.

     

  • HapB
    HapB Member Posts: 527
    edited October 2017 #3

    I took Letrozole

    I took Letrozole for 5.5 years. I forget which AI I started, but it was too much. The Letrozole was not great. I said to myself everytime I took it, "I hate this ****." But I did it. I went off Letrozole in February. My mammograms were fine til that point. Now I am dealing with watching a suspicious area. Anyway, that being said, everytime I would read the stats about not taking an AI, I stayed on the Letrozole.

     

    Dianne

    I really want to stay on an AI, but I could not walk or sit, drive a car. My legs would not work at all and the pain in my lower back was unbearable. I need to be able to walk and take care of myself.  

  • Apaugh
    Apaugh Member Posts: 850 Member
    Not an easy answer. dont think there is one...

    Hap, I was on Armidex for about 6 mo.  as you know I had terrible pain.  Yesterday was my 3 mo. check up.  My WBC is up and so is my bilirubin.  We are going to watch it.   I told my onc that I could not handle the Armidex any longer.  Too much bone pain all over especially in my hips and lower back.   So yesterday we went to Tomoxifen.  I dont have to worry about uterine cancer, it helps with bones.  Blood clots are a rare side effect.  I told him as much as I did not want anything, I understand my odds and I will give it a try but if the bone pain continues, I wont tolorate it as long as I did the other.  Meanwhile, working on natural ways to clense the liver.  

    Hugs,

    Annie

  • Puffin2014
    Puffin2014 Member Posts: 531 Member
    edited October 2017 #5
    ask about trying a different AI

    The lectures I've attended by different MO's have all said if you're having severe problems with one AI to try a different one, and just because one person can't take arimidex doesn't mean you'll have problems with arimidex. There have been several women in my support group who have switched with good results, each having good results from an AI that another couldn't tolerate. Even within the same AI, like arimidex, the fillers in different generics can make a difference. For Arimidex, the Teva generic seems to cause the least problems. My recommendation would be to try one of the other AI's.

  • Apaugh
    Apaugh Member Posts: 850 Member

    ask about trying a different AI

    The lectures I've attended by different MO's have all said if you're having severe problems with one AI to try a different one, and just because one person can't take arimidex doesn't mean you'll have problems with arimidex. There have been several women in my support group who have switched with good results, each having good results from an AI that another couldn't tolerate. Even within the same AI, like arimidex, the fillers in different generics can make a difference. For Arimidex, the Teva generic seems to cause the least problems. My recommendation would be to try one of the other AI's.

    yes...and it is so hard...

    For me 6 mos of sheer pain was enough on the Arimidex and I was so jealous when someone would say they had no problems with it and at the same time I was so happy for them.  So I am thankful I get to try another. 

    Most days i feel so overwhelmed and I just keep pushing forward.  Hap, your such a kind hearted sweet lady and I feel your pain and I pray for you all the time for an easier day of it.  I pray for everyone. 

    Hug,

    Annie

  • HapB
    HapB Member Posts: 527
    Apaugh said:

    yes...and it is so hard...

    For me 6 mos of sheer pain was enough on the Arimidex and I was so jealous when someone would say they had no problems with it and at the same time I was so happy for them.  So I am thankful I get to try another. 

    Most days i feel so overwhelmed and I just keep pushing forward.  Hap, your such a kind hearted sweet lady and I feel your pain and I pray for you all the time for an easier day of it.  I pray for everyone. 

    Hug,

    Annie

    Annie

    thank you! I hope that we can both find an Ai that will work for us.  I believe in the power of prayer and you are in my prayers also. This journey is not an easy one! Stay strong!

  • Teach76
    Teach76 Member Posts: 354 Member
    Took a vacation - maybe not the best idea

    I had taken a month off from AI inhibitor because I wanted to enjoy my daughter's wedding without extreme fatigue and pain.  In my mind I was concerned for the 4 weeks about how my body would react when I started up again.  As I feared! my SE came back with a vengeance ( severe joint and tendon pain on Femara), and my mental state is overwhelmed with intolerance and irritability.  My second daughter is getting married in July, and I am not sure I will try a vacation from AI again.  While I felt WONDERFUL throughout the wedding week, I am so upset with the return of my SE.  As always, no one understands, and I fear depression may be setting in, too, which I did not experience before.  I've been soooooo tired since I started AI again -  may rethink this for the next time.

    Kathy

  • HapB
    HapB Member Posts: 527
    Vacation from AI

    Kathy,  I had started on Letrozole for one month and the pain was so severe that I literally could not walk, drive, sit. So , ihave been off for 3 weeks now and after a week off, I felt normal again. Another SE for me was that my skin dried up like a prune and there was no amount of moisturizer that helped. So, I am seeing MO to figure out what to try next. I live alone and do not have the luxury of not being able to do everything for myself. I could live with pain, but not being immobile!  it really was a nightmare! 

    So, it sounds like for you the SE‘s went away over time and then restarting them they came back?  

  • Teach76
    Teach76 Member Posts: 354 Member
    I did not have any dryness of

    I did not have any dryness of skin, but my feet, knees, and hands had excruciating pain.  I would wake up in the middle of the night and it felt as though the tendons in my hands and feet had been pierced sharply.  Walking down steps can be very difficult.  I sometimes worry that my knees will give out or my foot will not function.

    At this point I could not figure out what may be age/arthritis and what is SE.  After being off the Letrozole for 5 weeks, I can say it is mostly SE.  It will be interesting to see what my Dexascan and Onco say when I go in a November.

    My other concern is the irritability and fatigue.  Onco does not like to hear SE.  Always looking for another cause.  It took me 3 months to convince him I had a sore throat from Armidex.  I hope you can try another AI - like all meds, we just keep trying until we find something we can tolerate.  I keep reminding myself that the chemo travelled all over my body, and I believe great chemical changes have happened.  Things I was never allergic to before not cause problems.  Oh, but that could not be an effect, could it? ( sarcasm inserted  - I don't know how to do emoji)!

    Kathy

     

     

  • Apaugh
    Apaugh Member Posts: 850 Member
    Meaner than a snake this week

    I had been on lexapro for years for anxiety and depression and they left me on it too long.  When they changed the anti estrogen I had to go off it.  Docs said, no biggen, just go off it.  Now I am having brain zaps and am just pissed off all the time along with adjusting to the new anti estrogen with another round of uncontrolable hot flashes. 

    I dont even like myself right now let alone anyone else like me. 

    Called the docs, OF COURSE they deny it as a side effect.  OF COURSE they deny they should of not took me off Lexapro cold turkey. 

    So I dont know what to do.  Prayers needed this all goes away fast.