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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Arimidex & numbness

Topic: Arimidex & numbness

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Jul 4, 2008 12:35PM

Sandra_rob wrote:

Hi,

I started taking Arimidex in April 07 after 2 years of Tamoxifen. I am now getting numbness in my hands & legs/feet at night - when my arms are raised my little & ring finger go numb, when I lie on my side the outer part of my leg goes numb & my foot, so that it wakes me up. Has anyone else had this & did it stop when you finished taking Arimidex? After reading stories of people developing Carpal Tunnel Syndrome I am getting worried in case Arimidex does cause some sort of permanent damage. My nurse says there is no evidence that Arimidex causes this sort of numbnessbut says the only way to find out is to stop taking it for a while - which I'm reluctant to do at the moment. I noticed Astra Zeneca's website says parasthesia is a side effect of A. but doesn't specify if this is just carpal tunnel.

Thanks for any help with this

 Sandra 

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Posts 1 - 24 (24 total)

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Jul 4, 2008 03:23PM karen1956 wrote:

Sandra - CTS is a known side effect of the AI's.  I developed it in both hands by 5 months on them.  Had surgery on the right hands and was waiting on the left.  When I went off the AI's, the CTS went away.  In the most recent drug incert from Astra Zeneca, they do list CTS as a side effect, but it is way done on the list.  I went off the AI's for about 3 months (took tamox for two of those months) and the CTS went away as well as many of the other side effects.  I have now been back on Aromasin for one year but luckily so far no CTS (but I have developed tendonitis - but hard to tell if it is from that as my DH recently had surgery for tendonitis).  Hugs to you. 

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,

Dx 2/2/2006, ILC, Stage IIIa, Grade 1, 8/12 nodes, ER+/PR+, HER2-Surgery 03/01/2006 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)Chemotherapy 03/22/2006 Adriamycin, Cytoxan, TaxotereRadiation Therapy 07/27/2006 ExternalSurgery 10/19/2006 Prophylactic Ovary Removal (Both)
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Jul 4, 2008 03:33PM burns_la wrote:

I have been taking A for quite a while and just now started waking up with my left hand asleep. I didn't connect the two until your post. I am hopeful that many things will change when I get to stop taking this...

Laura from Oregon. On the way to my "new normal." I will never be totally free of the worry, but will no longer be defined by it.

Dx 12/31/2003, IDC, 1cm, Stage I, Grade 1, 0/18 nodes, ER+/PR+, HER2-
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Jul 4, 2008 05:38PM florencedonna wrote:

Sandra,

I consulted Dr. Google and found that a numb baby finger and ring finger is from problems with the ulnar nerve.  Rather than carpal tunnel syndrome, it could be cubital tunnel syndrome. Dr. Wikipedia recommends avoiding sleeping with your arms bent at the elbow.

arimidex is a giant pain, sometimes in a movie theatre I will keep track of how the pain jumps around from area to area.

donna

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Jul 7, 2008 03:05PM Sandra_rob wrote:

Thanks for your replies. It helps to know that other's are getting similar symptoms, but I guess as I'm not getting CTS type numbness then I'm still not sure if this is the Arimidex or not - no-one else mentions numbness in the legs... so I don't know what to think, when I speak to the bc nurse she doesn't seem to know much, I hope to speak to oncologist soon & see what they say - I notice on Astrazeneca's website they mention parasthesia as  a side effect for trails with patients with secondary cancer, but they don't specify if this was just CTS... all very confusing.

Take care everyone

 Sandra

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Jul 7, 2008 05:53PM smarrugi wrote:

Sandra, I just completed 5 years of being on Arimidex.  My oncologist took me off the drug because there's no evidence that it does any further good after that.  My two big toes have been partially numb for the last two years.  It drives me crazy to go barefoot, so I always wear socks...even to bed.  My internist has run blood tests, etc. and nothing shows up. She feels it's probably a side effect of the Arimidex...and she also feels the drug may have caused permanent nerve damage.  I've been off the drug three months now.  No improvement.  I guess there are pro's and con's to any drug.

Sue 

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Jul 9, 2008 03:41AM Sandra_rob wrote:

Sue, Thanks for you reply. I really only get the numbness when I am in bed, in my legs it's when I sleep on my side & I must be pressing on a particular nerve. I had this once or twice before the Arimidex but now it's most nights, as well as the hands, which I did have before A. but probably not as bad. It worries me that this will be permanant & after another 2 years of the drug it will be much worse. I notice others have switched to Aromasin - did you try that?

Take care

Sandea 

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Jul 9, 2008 07:00PM smarrugi wrote:

No, I never did try Aromasin.  In fact I though Arimidex an Aromasin Inhibitor.  I must be confused. What is the difference between the Arimidex and Aromasin?  It was never presented by my oncologist.

Sue

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Jul 9, 2008 11:37PM Texgirl wrote:

parasthesias can be of any skin surface but generally noticed more in the hand/arms legs/feet .

Arimidex plays a major role in this side effect though not all women have these symptoms. I had a moderate case and wore a wrist splint for about 1 yr...saw the hand surgeon and considered surgery for my CTS. He treated me w/ cortisone injections sev. times with some relief. It was only after being placed on Aromasin that I finally rid myself of the problem.

The use of the wrist splint ( non -prescription) was a real benefit. I was also instructed to dev. better sleep habits and watch how I curled my hands while sleeping..yes u can control this habit !)

Smarrugi......................Arimidex and Aromasin are 2 of the Aromatase inhibitors available to hormone + women. Femara is another. If you are hormone + and premenopausal you take Tamoxifen. The AI's are fairly interchangeable .You may find that you do better on one rather on another. To my knowledge ,moving from one type to another is not deleterous to your survival. ..and your quality of life may improve if you find you have many side effects on your present drug..

Dx 2/8/2005, IDC, 6cm+, Stage IIIc, Grade 2, 22/22 nodes, ER+/PR+, HER2-
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Jul 11, 2008 12:25AM smarrugi wrote:

Thanks for the clarification, Texgirl.  My oncologist isn't willing to put me on anything now that I've completed 5 years of Arimidex.  I was confusing Aromasin with Aromatase.  What exactly is parasthesia?

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Jul 12, 2008 08:59PM melmedic06 wrote:

don't you just love it when the nurse and/or doctor tells you "none of your symptoms are a side effect of the medication"  oh REALLY??? because until i took that first pill i never experienced any of this fun before like numbness (both hands and both feet) chronic insomnia- my own private indoor summers -joint pain- stiffness and knotted up ugly hands- i was pretty much just a normal 50+ something woman with a few complaints but i attribute all of my discomfort to the arimidex - do you exercise? try to eat healthy? can you take motrin? they say 800mg twice a day really helps- i know you are frustrated but keep searching for answers and maybe a medication change- good luck-

ILC (left breast)  october 04  0.9 cms  lumpectomy  radiation arimidex

DCIS (right breast) august 05  found on steriotactic biopsy- lumpectomy showed no DCIS only healthy breast tissue- radiation and continue on arimidex

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Jul 13, 2008 02:18PM smarrugi wrote:

Thanks, melmedic06Laughing

I'll try the motrin.  Anything!!

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Jul 13, 2008 02:26PM wishiwere wrote:

That's what the nurse told me they prescribe.  800 mg of motrin (ibru), then follow up with 2 extra strength tyleno at 6 hrs, then 800 motrin again after 6 more hours and tylenol again.  Sounds like an awful lot for livers/kidneys and so on after chemo to put up with for 5 years! 

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2-

Dx 9/21/2007, ILC, 1cm, Stage Ib, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 15, 2008 02:42PM Sandra_rob wrote:

Hi everyone,

Glad to know I'm not alone in this. Melmedic06, you say you had numbness in both your hands & feet, was this just at night like myself or all the time? I have not heard of motrin (I'm in the UK), what is it?

I do exercise & eat v. healthily & generally feel fine, though I know what you mean about the indoor summers. I do suspect when I get to speak to the oncologist they will not have any real answers as it seems to me it is still early days for Arimidex, certainly given it is only in the last few years that early stage bc patients have been given it.

I tried to look at the recent article (January 08?) on the ATAC trial which reported back after 100 months, hoping to see what side effects where reported but I've been unable to get access to it.

Take care all

Sandra

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Jul 18, 2008 08:32PM melmedic06 wrote:

hi sandra- motrin is ibuprofen- a non-steroidal anti-inflammatory- i think it works wonders for pain and there has been a link between taking motrin on a daily basis and less chance of getting alzheimers- so that's a positive! my numbness is in my feet and at its worst in the morning (feel like i'm walking on pillows) and if i sit too long in one position my feet take a few minutes to feel normal- i am used to it now and don't jump up out of the chair like i used to- of course i don't do alot of things like i used to :-) peace and namaste-  melena
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Jul 23, 2008 08:55PM Dansmom wrote:

I saw my oncologist a week ago, complained about the unbelievable stiffness in my hands and she told me to stop the Arimidex for a few weeks and then start up on Aromasin.  I had been taking Arimidex in the morning.  Literally 24 hours after stopping, the stiffness was largely gone!  Amazing.

Dx 2/23/2008, IDC, 3cm, Stage II, Grade 2, 0/3 nodes, ER+/PR+
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Jul 24, 2008 07:17PM Texgirl wrote:

Sorry for the long time without a reply ( went on Vacation ) Cool then couldn't find this thread !

Parasthesias are generally described as sensations such as burning,prickling,itching,numbing,or tingling  without an apparent cause.

When I originally dev. this issue prior to seeing the Doc...I awoke one nite in severe pain.It felt as if someone had poured hot grease down my arm and hand. It was severe and it lasted about 20 minutes. Nothing would make it go away....I had this same symptom 3 times before I got in to see the hand surgeon. I actually thought that perhaps a scorpion or some other creature had bitten me in my sleep ..it was that bad.

I am currently concluding my first yr. on Aromasin without any indication of CTS or parasthesias...we just all respond to these meds so differently. I still say if one doesn't work try another....................

Dx 2/8/2005, IDC, 6cm+, Stage IIIc, Grade 2, 22/22 nodes, ER+/PR+, HER2-
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Mar 5, 2009 03:32AM Dansmom wrote:

I've moved on - left Arimidex (see above) ,tried Aromasin - it was better initially and then it started cramping up my hands & I started feeling creeky in the knees too.  Now I'm on tamoxifen and so far that seems to be the ticket!  I say if you don't like what's happening, complain to the Dr.  That's what they get paid for.  Speaking of which, do the bills ever quit coming?

Dx 2/23/2008, IDC, 3cm, Stage II, Grade 2, 0/3 nodes, ER+/PR+
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Mar 5, 2009 06:46AM elisabeth wrote:

Hi Dansom.  It looks like you are the first post on this thread for a long time.  I wanted to thank you because it validated my decision to quite Arimidex and not even try another AI.  At 3;30 in the morning the other night I said that is it. My hands were so bad I could hardly function.  And to describe the feeling is almost impossible to people who have not experienced it.  I am starting to get some of the regular feelings back in my hands, but not all of it.  I am waiting for my med onc to call me back so that I can get a script for Tamox.  I sure hope I can deal with it.

Thanks again.  E 

Dx 5/8/2008, IDC, <1cm, Stage I, 0/2 nodes, ER+/PR+, HER2-
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Mar 5, 2009 10:41AM gramadeb wrote:

I have been on Arimidex for 6 months. Over the last month I have noticed increased joint pain and numbness in feet. I also have burning pains in my legs at times. If I do any activity my joints are so painful I can hardly walk up stairs. Told my onc and I am now on a 2 week break from Arimidex to see if that is indeed the culprit. If pain subsides I will be switched to Tamoxifen. I can relate to what you gals are describing - not fun. I thought I was going to have minimal se until this last month and wow - did I get hit with them.

Deb

Dx 2/7/2008, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 5, 2009 10:59AM floridian wrote:

Wow - this is interesting. My son is on Arimidex for a growth issue/ premature puberty and he has been complaining of numbness in his arm. I never thought of the Arimidex.

(dense breasts, fibroadenomas, duct ectasia, apocrine metaplasia and undiagnosed lumps)

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Mar 5, 2009 11:05AM elisabeth wrote:

Hi All.  I sure am glad that Dansom reactivated this post.  Deb - so sorry about the SEs - I sure understand.  

Kim - I am so sorry to hear about your son.  My med onc confirmed my thoughts in regard to the SEs being from Arimidex.  Every time I would mention something he said "I know."  He did not ever say that this was "in my head" or not due to the Arimidex.  Also, if you look at the Clinical Trials, Research, Something" thread there is a post about the new warnings from the FDA about Arimidex.  In December the makers of Arimidex supposedly have done a new sheet that comes with the drug.

Dx 5/8/2008, IDC, <1cm, Stage I, 0/2 nodes, ER+/PR+, HER2-
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Mar 5, 2009 11:45AM floridian wrote:

Hi Elisabeth -

Thanks - I will check that out. My son has a very complex medical situation so I didn't even think about the Arimidex. I will also talk to his doctor. 

Kim

(dense breasts, fibroadenomas, duct ectasia, apocrine metaplasia and undiagnosed lumps)

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Mar 8, 2009 12:31AM cnewberry55 wrote:

I also have been having numbness in my surgical arm.  When I lay on that side at night or if I sit too long with my arm in one position. I was thinking it was a nerve thing from the lymph nodes being removed?

Has anyone heard of taking Co Q-10 for side effects from Arimidex?

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Mar 9, 2009 08:25PM cupcake7 wrote:

I am absolutely amazed that I have to learn of the numbness in  my pinky finger and ring finger in a chat room.  I started the Arimidex and stopped it because of the horrible joint pain.  I have arthritis and the rain just aggravates it, but this made it worse.  Then on the other link it talked about vaginal atrophy that a lot of the ladies have while taking the Arimidex.  I'm done with it.  I will take my chances as it is a quality of life issue and I have done 6 months of poison of chemo in my body and not going to add the Arimidex to it. 

Dx 6/13/2008, 1cm, Stage IIIa, Grade 3, mets, ER+, HER2+