Arimidex and numb hands?

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Hello,

 I have been on Arimidex for 3 weeks.  I noticed in the last week that my hands become numb during the night.  Last night I woke up because the pain/numbness was so bad, especially in my right hand.  Is anyone else experiencing this on Arimidex?  If so, have you contacted your Onc about it?  I am a bit tired of contacting my Onc, trying to save myself more appointments!?  I took Tamoxifen for 9 months and did really well on it.  I had to have a hysterectomy in Nov. and now post meno so switched to Arimidex.  Is Arimidex so much more effective post meno?  I have read other threads on BC.org on this but would appreciate additional feedback.

 Thanks!!  Smile

Sue

Comments

  • KateQ22003
    KateQ22003 Member Posts: 5
    edited February 2009

    I had exactly the same situation on Arimidex. The numbness was so bad at night it would keep me awake. I mentioned it to my oncologist and he told me that it couldn't be the Arimidex. Of course, every side effect I mentioned he told me couldn't be from the Arimidex. Well, I finally went off the Arimidex and back on Tamoxifen, and the numbness went away completely. Go figure...

  • tami48
    tami48 Member Posts: 533
    edited February 2009

    I had alot of problems with Arimidex.  I finally talked to my Onc and asked if I could try Tamoxifen.  I'm now on Tamox and doing good.  All of my side effects from Arimidex went away.  Everyone's different as to which drug they can tolerate.

    Good luck!

  • my3girls
    my3girls Member Posts: 3,766
    edited February 2009

    I have several side effects with Arimidex. I wouldn't say numbness in my hands, but they hurt! I have pain in my joints, and bones. I have a dry mouth and eyes. And of course since I am meno. (hystrectomy in Aug) I have vaginal dryness. I told my oc this past visit to take me off!! I did better on tamox.  She said give it 6 mos. I started in Oct. I told her I would try a total of 6 mos, but if its not better. I can't stay on it. I know with tamox...it took me  about 5 months to adjust to it.

    We will see.

    I hope you get some relief and answers. I take an Aleve once a day...definately helps.

    xoxo

    Lisa

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Yes I too had the numbness while on Arimidex.

    I only took it for 4 months and had such aweful side effects that I went back to tamox....I have very mild se's with the tamox and plan to use it until they tell me I cant anymore....

    I had thought to try the AI again this coming May as I will be 2 1/2 yrs into hormonals but I think I will stick with the old school and use it the full 5 yrs...

    Hope you find relief....

    Jule

  • Jack55ok
    Jack55ok Member Posts: 37
    edited February 2009

    I have been on the Arimidex for 8 months now. I too experience numbness and achy joints really bad. I told my onc about it and asked if i could switch to Tamoxifin and he said it is not as effective. He basically told me to deal with it. My achy bones are the worst for me. I can no longer sleep in my bed becasue it is an extra firm mattress, so I had to buy an air mattress. I do love it though, it is like sleeping on a cloud. Anyway I have been scared into sticking with the Arimidex!  

  • Seashell49
    Seashell49 Member Posts: 128
    edited February 2009

    Thanks to all for your feedback!  Here we go again...more pain, what is it??  I am going to see how this goes.  If it keeps up I will need to make a change.  I also did really well on Tamox.  It's bad enough I'm awake half the night with hot flashes... don't want to be up with hand pain!!?? Embarassed  The hot flashes are worse on the Arim. but maybe it's also from my hyster. in Nov.?  It's amazing that alot of you have gone back to Tamox!  Keep me posted on how you're doing...and I will do the same.  :)  Wishes to all for minimal side effects in the days to come!! 

    Kate - you made me laugh when your Onc said it cannot be from the Arimidex!  I think Dr.'s are so "vague" these days and won't say anything is caused by anything!?  It's amazing we all have the same symptoms on Arimidex!!??

     Hugs!

    Sue

  • elisabeth
    elisabeth Member Posts: 255
    edited February 2009

    Hi All.  Yes, the hand pain/numbness, etc. is from the Arimidex.  I just saw my medical onc last Thursday and he said, yep, that's the Arimidex.  I have been on it for about 3 and 1/2 months and have gone to cutting it in 1/2 and taking it every other day.  My doc said okay, even though it may not be effective, but he knows how hard it is to take this drug.  He said because of my dx he was okay with what I was doing and to stop Arimidex if it interferes with my daily activity. He said I would then go on Tamox.  He said it is very hard to tell who benefits from these drugs when the dx is similar to mine.  I told him that I would "fight with the devil that I know" (Arimidex) for a little while longer.  I'll see if I can stay on it or not, but if my hands continue to be really bad I don't think I will be able to do it.

    I wish you all the best and hope that these doctors stop not telling the truth.  Mine is very honest and very knowledgeable.  E 

  • anniemar53
    anniemar53 Member Posts: 34
    edited February 2009

    Jack55, your situation sounds so much like my own. I had started with the Tamoxifen also and didn't do too bad with it then my dr changed me to Arimidex and I have the numb hands, achy joints and hot flashes that I didn't experience while taking the Tamoxifen. After complaining to him about this he said since he'd tested my blood and found I was post menopausal that I needed to stay on the Arimidex because it was more effective. So I've been just dealing with it because I want to do whatever treatment is most effective for me. It's interesting to read others that have the same problems that I do.

    annie53

  • lisettemac
    lisettemac Member Posts: 213
    edited February 2009

    Seashell -- your symptoms sound exactly like mine.  It started with some pain in my wrist.  Lots of numbness at night in my thumb and first 2 or 3 fingers.  Now, I have lots of pain in my wrist and in the morning I don't have full range of motion.  My onc says it's carpal tunnel.  Google it -- the symptoms are identical to what you describe.  It can definitely be caused by the Arimidex -- my onc says it's on the spectrum of joint problems from Arimidex, but less common than joint/muscle pain.  Onc recommended I take a month off from the Arimidex and see a hand specialist.  I see the hand doc tomorrow, so I'll let you know what I learn...

  • my3girls
    my3girls Member Posts: 3,766
    edited February 2009

    I think with all of us on the same drug..and the same symptoms..we know it's the drug!

    Seashell...I too have the hot flashes...but mine are controlled, because I take Effexor xr. It is a miracle drug for me. I had my hysterectomy in Aug..and switched (after a year) from tamox to arimidex in October. My symptoms really got strong around Christmas..and by the first of Jan..I felt bad, physically and emotionally. I got very depressed. So my oc increased my effexor from 75mg to 150. In about 3-4 days on the new dosage...I felt so much better..emotionally.

    I too have the hand pain and shoulder pain mostly at night. At least that is when it is the worse. I take an Aleve daily...and that has helped it somewhat. I will give this drug until April to see if it gets any better. But so far...it's a difficult one to be on. Not sure that the benefits outweigh the side effects. Has anyone researched the #'s??

    Heres to some pain free days for my dear sisters here!

    xoxo

    Lisa

  • apple
    apple Member Posts: 7,799
    edited February 2009

    i suffer from minor hand and wrist pains and problems, mild carpal tunnel, numbness,  as a pianist.  I find that wearing silk  gloves at nite, and wrists bands during the day (like for tennis) really helps... that and nsaids which i am loathe to take.  I am a big fan of rice bags (rice in a sock that you microwave for warmth).    In a nutshell, stretching for mobility is good and cold is bad.

    i don't know if these noninvasive techniques could counteract side effects.. i'm hoping because i have them.

  • KateQ22003
    KateQ22003 Member Posts: 5
    edited February 2009

    Hi Sue (and all!)

    I talked to my oncologist, my breast surgeon, even my primary care doctor about all of the issues I was having with the Arimidex. Nobody wanted to listen. Believe it or not, my oncologist tried to tell me that I was just depressed, and that depression was causing me to have problems, not the medication. My surgeon went so far as to tell me I needed a therapist, not a medical doctor. I left his office in tears. I couldn't get anyone to understand that I was sad because I didn't ever feel well, not the other way around. Finally they pulled me off the Arimidex and put me back on Tamoxifen due to my estrogen levels, and lo and behold all of my issues went away (except the weight gain, but that's a story for a different day!)

    I have been very disappointed in the way my concerns and problems have been swept under the rug. I feel like these doctors only know one course of action for each situation and by God you have to stay that course no matter what kind of quality of life you do or don't have. I have never been as miserable as I was on the Arimidex, but I kept being told "it's not the Arimidex."

    There, venting done. I feel better. Thanks, ladies!

    Kathy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    I began having the numbness and tingling a few months into taking Arimidex. I had other SEs too, primarily pain in my shoulders and back of the neck, so I switched to Aromasin. I had the same problems, but after about one year the joint pain abated, leaving me only with the hand issue. This had gotten increasingly worse and, so, my onc referred me to a hand-specializing orthopedist. He ordered an EMG which definitively diagnosed carpal tunnel syndrome. Although the docs, at first, refused to believe that the CTS was related to the AI, they've now seen enough cases to concede that it is. In fact, someone told me that the Arimidex website now lists it as one of the possible side effects, but I haven't verified that. In any event, I began having cortisone injections every six months or so and they worked like a charm until recently (I've been on the AI since 10/05), so I just had the surgery to release the nerve and it now feels significantly better. I think that if I had it to do again, though, I'd stick with the cortisone shots for awhile longer and see if that one ineffective one was a fluke.

    ~Marin

  • lisettemac
    lisettemac Member Posts: 213
    edited February 2009
    Well, I just got back from the hand specialist who has ordered an EMG.  She says that she doesn't think it's related to Arimidex because it's only 1 hand, instead of 2.  She did say that childbirth, bc pills and menopause can all contribute to carpal tunnel and I've had all of those!  Of course, one would think if this was brought on by my menopause, that wouldn't affect only 1 hand either!  Wink  Either way, she gave me a wrist splint and ordered some PT, but said that the release surgery is really the only effective fix.
  • elisabeth
    elisabeth Member Posts: 255
    edited February 2009

    Hi All.  It is so sad to read these posts.  The Arimidex causes one problem after another and to have to have hand surgery or CT surgery is just unacceptable.  Why can't the drug companies do something to develop other medications?  Why isn't there adequate research so they discover why so many women are getting BC?  I feel so bad that this is happening to so many of us.  Having surgery, etc. for BC is bad enough, but then to have to have more invasive procedures because of treatment is just terrible.

    Sorry to express this - but it is how I feel.  Thanks for listening. E 

  • karen1956
    karen1956 Member Posts: 6,503
    edited February 2009

    CTS (carpel tunnel) is a side effect of the AI's. Ask your pcp for a referral to a good hand surgeon...try a splint...it can help...also cortisone shots work for many people..I was having nerve damage for had CTS surgery on right hand. Was waiting on left hand, but went off the AI's and it went away.  Started back and developed dequervanes tendonitis..ending up having surgery on both wrists..splint and cortisone shots offered no relief. I struggle with all the side effects, but I am scared of mets...the side effects are  not so much from the drug itself, but from the lack of estrogen..Many women have not side effects at all...sure wish I was in that category.  I had my 3 month check up with onc last week and I was telling him how wicked the hot flashes and night sweats were and he said that means the AI is working. He has heard me complain foe over two years about the side effects.  I told him last week that I had to keep convincing myself to stay on the AI's and he said...keep doing that.  He feels for me it is quite important to stay on them..it is one day at a time, but for now..I am not ready to quit as much as I complain.

  • bearlysane111
    bearlysane111 Member Posts: 735
    edited February 2009

    Hi Seashell,

    I have been on Armidex for over two years and have numbness and tingling in hands and feet. I am post-menopausal and never took Tamoxifen.

    Sent you a PM as I am from near your area.

     Iris

  • Seashell49
    Seashell49 Member Posts: 128
    edited February 2009

    Hello All!

     Wow!  You've all been a help with all of this feeback and info!  I have been popping the Advil and have had some relief with the hands.  Since I've only been on the Arimidex for 3 weeks... will wait to see how it goes.  I'm not sure I'm getting good sleep... hot flashes and numb hands!!??  Undecided

     It's amazing to hear what one Onc. says vs. another!?  Based on all of us comparing notes...I think these hand issues are from the drug as Lisa said!!

     Elisabeth, you are so fortunate to have an honest Dr. who validates your concerns.  Every time I mention any symptom... they just want to give me another prescription to mask that symptom.  I will be walking around in a drug cloud.  I'm funny about taking pills..with more side effects...especially since I've worked so hard to keep 50 pounds off!!  Your diagnosis is similiar to mine, was your Dr. borderline as to if you would even benefit from Arimidex?  You're right...it would be nice if all of these drugs would not cause additional problems!!??

     No Pink & Lisettemac - I was reading that numbness in just the thumb and first 2 fingers is a sign of something specific... is it carpel tunnel?  Thanks for the feedback from your hand Dr. Lise...  If this gets much worse... I may be headed there myself!

      Lisa, have you had any side effects from the Effexor?  My Dr. offered it to me for the hot flashes.  I had my hyster. in Nov. and so far feel good emotionally..but don't know if lack of sleep and hormone changes and Arimidex will alter that eventually?  I do cry at the drop of a hat!!??

    Kathy, Gosh... your Dr.'s really put you thru it!!??  And after all of that put you back on Tamox!  You mention your hormone levels.  Are you pre or post meno?  I am post meno now and am afraid to go back to Tamox (which I did really well on!) as it may not be as effective for me now?

     Marin - So, the AI's actually can cause Carpel Tunnel?  Thanks for your input on what course of treatment you took..

    Iris & Marin - hello from just accross town!!  :)

    Thanks to all... keep us posted!!

    Sue :)  xoxo

  • Lynne
    Lynne Member Posts: 641
    edited February 2009

    Hi,

    I also had the hand numbness at night on Arimidex. I had the joint pain so bad, that I was switched to Femara. I only last 2 months on that because my feet hurt so bad that I could hardly walk. They put me back on Arimidex. After 6 more months on it, I was ready to quit it all together after only 2 1/2 yrs. My oncologist put me on Tamoxifen (which I was never put on because I decided to have a complete, ovaries, everything, hysterectomy at a premenopausal 43, right after my radiation, and was then postmenopausal). After 3 months on it (with only hot flashes as a side effect), I had to be taken off because of my high liver ezymes going up even higher. I am now on my first week of Aromasin. So far I've had a headache everyday (I never have headaches). If the joint pain comes back too, I'm done. I've been on these drugs for a little over 3 years now, and I just want to feel my age, not like an old lady anymore! I took effexor for 3 years for the hot flashes (brought them down from 30 a day to 10), I decided to come off it and try nuerotin. I took me over a month to wean off the effexor. I got dizzy and my ears were ringing, and nauseous, it was awful. The nuerotin is working about the same as effexor, but I don't feel like a zombie without emotions like I did on the effexor.

    Good luck!

    Lynne

  • KateQ22003
    KateQ22003 Member Posts: 5
    edited February 2009

    Hi all!

    Sue, I actually was told that I was post menopausal last January after my yearly bloodwork, and switched to Arimidex from Tamoxifen. From day one I had terrible side effects - nausea & vomiting, weakness, bone pain, dizziness, anxiety attacks. I ended up at the doctors several times and they put me through every test known to man. I had ultrasounds, sonograms, upper GI series, CT scans on my liver (my enzyme levels went through the roof), endless bloodwork, etc. Through all of this they insisted that it wasn't the Arimidex. I was sick as a dog and petrified that it was cancer. Then in August I had a period. I hadn't had one for almost 2 years. So of course, they sent me to the OB-GYN who sent me for a vaginal ultrasound which showed uterine wall thickening. My doc ordered a uterine biopsy (loads of fun) which luckily came back normal.

    The next month I had another period. Now we are not talking spotting here - we are talking just like high school! So back to the doctors I went for yet another blood test. As it turned out, I had lots of estrogen. So much so that they now tell me I am pre-menopausal, not post. So, all of the battles I had with Arimidex were for nothing. My oncologist says that it probably didn't hurt me any, but it didn't help me either. Great. So, I'm back on the Tamoxifen until September when my 5 years is up. I was so tempted to just say to heck with it -  I'm done, but I don't dare. I want to know I have done everything I can to prevent a recurrence.

    So that's my saga! Hope everyone is having a good day.

    Kathy 

  • my3girls
    my3girls Member Posts: 3,766
    edited February 2009

    Seashell49 wrote

         Lisa, have you had any side effects from the Effexor?  My Dr. offered it to me for the hot flashes.  I had my hyster. in Nov. and so far feel good emotionally..but don't know if lack of sleep and hormone changes and Arimidex will alter that eventually?  I do cry at the drop of a hat!!??Sue...about the effexor xr...it is a WONDER drug for me. I am like you...I don't like to take pills.  I was put on it a year ago, because of depression and hot flashes after my reconstruction. It was the plain effexor..generic..I had to try it because of my insurance. Well..it did not agree with me, it bothered my stomach. So my family doctor gave me samples of the effexor xr..and it was fine..no side effects..no problems. So then my insurance would approve, since I tried the generic first. I was originally on 75 mg, and it did the trick.  I felt like a new woman..and the hot flashes are minimal.  Then this past Dec..after my hysterectomy (aug) and going on Arimidex in Oct...I felt like I was in some kind of black hole. Everything bothered me..crying..etc.  My OC upped my dosage to 150 mg...and within less than a week on the increased dosage...NEW WOMAN AGAIN. It may not be a wonder drug for everyone...but it is for me.Now that my biopsy is over, I can take my Aleve daily again, and help with this hand, shoulder and neck pain.Hope that helps you Sue.xoxoLisa
  • lafera12
    lafera12 Member Posts: 71
    edited February 2009

    Hi all

    Does anyone know how long the numbness will last or if you will have it for as long as you're on Arimedex? Or has anyone contacted Astra-Zinaca about it?  I have it in my thumb, index finger and middle finger on my right hand...and I'm righthanded..

    Angie

  • elisabeth
    elisabeth Member Posts: 255
    edited February 2009

    Hi All.  I contacted  Astra-Zinca when they were putting Arimidex in that horrible cardboard container that you couldn't get the pills out of.  I talked to a nurse there, but she really wasn't any help.  She was sympathetic, but remember, she works for these big pharms.

    Sue - my med doc said that with diagnoses like mine (yours appears to be similar) that it is unclear who is helped by Arimidex. He said that women work very hard to stay on these drugs because they are always fighting and wanting to work to do the most they can for themselves and their children, etc.  He said that if a guy had the diagnosis we had there is no way they would be on the drug and deal with the SEs.  I have to tell you that he is not sexist either.  He is just very realistic and deals with all kinds of cancer and cancer patients.  Also, Sue, Tamoxifen is not a bad drug.  The benefits to taking Tamoxifen versus an AI are not that great.  My rad onc said he would rather see me on something than taking nothing.  He said if you can't do the AIs do Tamoxifen.  We'll see.

    Take care everyone and I sure hope we can figure something out about this crap that we have to put in our bodies.

  • B123
    B123 Member Posts: 730
    edited August 2017

    can arimidex cause tingling andnumbness to jaw. Cheek and head

  • WorryThePooh
    WorryThePooh Member Posts: 413
    edited June 2019

    Over the last few months my hands have been getting numb in the night to the extent it keeps me awake some times, it feels horrible. I realised it has only been happening since I've been on Arimidex so I am assuming it's very possibly a side effect.

  • dtad
    dtad Member Posts: 2,323
    edited June 2019

    So sorry you are suffering from side effects of Arimidex. Just wanted to let you know this is a very old thread. However, others have reported the same symptoms as a side effect. Hopefully someone will come along to share. We are all here for you. Good luck and keep us posted.

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