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Neuropathy - How Did It Start & Progress - Be Very Specific - On Arimidex

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

I am not sure what is going on and am beginning to suspect condition to be a side effect of Arimidex. I want knowledge. To those reading this posting who have neuropathy, how did it start? Did it start slowly? So far neurologist and spine specialist are stumped as how I should be treated. I have had a MRI of brain, MRI of neck, EMG tests on hands, 7 x-rays of neck. First right hand only had tingling and numbness in fingers - sensation came and went, came and went. Baby finger not affected. Hand also waking me up numerous times while I slept.

Within 2 weeks, left hand developed same thing except at times it includes all 5 fingers and at times includes palm. My grip is strong. Two vertebra in neck could possibly be pinching on a nerve but spine specialist is not certain that is the problem. Neurologist said that I have a slight carpal problem but based on my description and reaction of EMG test he is not certain how to treat me, which is why he wanted a second opinion from the spine specialist. Now, in the last 2 days, my finger tips are numb (or tingling) when I touch them with my fingers. This is for both hands and this seems to be lasting much longer.

We are all different and we all react in a different way. I want to know (if you can remember) how did your neuropathy develop and progress. I started Arimidex on Thursday, March 18, 2010 at 8:00 a.m. Only problem was hot flashes, which were not bad and not that frequent.

Hugs,
Janelle

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

It got stuck and I kept hitting "Post Comment". Now please answer my questions on neuropathy.

fauxma's picture
fauxma
Posts: 3542
Joined: Dec 2008

And the record goes to Ballgame. I figured you just really wanted an answer. LOL
I have been on arimidex for 18 months and had no problems. But my hubby has neuropathy in hands and feet. They originally thought it was from his recently being diagnosed with diabetes and they put him on some meds for it. They don't help much. His is tingling and pain (extreme in his feet) and now swelling. We are beginning to think that this is not from diabetes but maybe from whatever is going on with his heart. We see the cardiologist on Friday and will address issue with him. In all the tests you have had, have they done an EKG or any heart tests. I can't remember if you did Herceptin or not so I don't know if you had a MUGA. And I don't remember if you were diabetic (I know that a few of ladies are). I certainly hope they get to the bottom of this because I know from Den's that this is a very uncomfortable issue. My good thoughts will be that they discover the cause. I can't remember if it is a side effect of arimidex but it could be. Again, I hope that they can figure this out for you.
I will cut and paste this reply to all of your posts. Just kidding.
Stef

Different Ballgame's picture
Different Ballgame
Posts: 870
Joined: Jan 2010

I never had chemo. I had an EKG in September during annual physical and it was perfect. Ask your husband if he remembers how it started and how it progressed. Did it start in part the of the hand and then as time passed it went to the whole hand?

Stef, thank you for responding.

Hugs,
Janelle

fauxma's picture
fauxma
Posts: 3542
Joined: Dec 2008

His started in his feet and progressed to his hands. The feet are still the worst and his EKG showed problem areas. It could well be the arimidex. I think that others have had problems with this. You might ask about stopping the arimidex and see if it improves. If it stops you could look into another hormone blocker and if it continues you will at least have eliminated that from the cause. I hope they find the cause. Den is really bothered by his and we are hoping that they can find the cause or a better treatment.
Stef

LadyParvati's picture
LadyParvati
Posts: 328
Joined: Oct 2009

My neuropathy also started in my hands; I first noticed that the backs of my fingers & hands just about the main knuckles were tingling, then numb. Then my fingers went numb, then my toes.

I think different people experience neuropathy differently and to different degrees. It also heals differently, and often the doctors cannot tell us what the long-term outcome will be. *sigh*

Janelle, hang in there. I know how hard you try to be positive, but I also know how frustrating and scarey this can be . . .

HUG! Sandy

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

I think you did break the record! LOL Wish I knew something to write back to you. I am sure others will. Good luck!

jo jo's picture
jo jo
Posts: 1175
Joined: Jun 2010

Janelle your to funny...i think you did break that record...Lol!
Sorry but i never took Arimidex so i dont know...i just wanted to respond to "ALL" of your posts hehe!

Miss Murphy's picture
Miss Murphy
Posts: 302
Joined: Feb 2010

Hi Janelle!

I can't really help you out. I did take Arimidex for about 6 months after taking Femara for about 6 months - I couldn't tolerate either. I had severe muscle and joint pain but no neuropathy. Lots of hot flashes and night sweats as well. I'm now on Tamoxifen and have been for the past 13 months. It's not so great either but is more doable than the other two drugs.

Sure hope your doctors can figure out what's the cause and then come up with a solution for you.

Hugs, Sally

creampuff91344's picture
creampuff91344
Posts: 989
Joined: Nov 2008

Janelle, I suffered with neuropathy soon after starting Femara, and it developed in both feet, and the ends of all of my fingers on both hands. Because of severe side effects from the drug, I was switched to Tamoxifen. The neuropathy started slowly in my feet first, and then my fingers. The fingers quieted down after stopping Femara almost immediately. Now, two years later, I still have no feeling in my right foot, all but the big toe. My oncologist says that this condition may be ongoing (maybe permanent), and so far it has not gotten ay better.

Just as a side note, I also had to have a plate placed in my neck due to a snow ski accident in 1988. They fused C5 thru C7, and before the surgery I experienced neuropathy in my hands. That was probably the final straw for me, as the pain was unbearable. Sounds to me like your problem may be in the neck/spine area. You also said you didn't take chemo, and chemo also causes neuropathy. I would suspect the spine area as your culprit, but consult with your doctor, and let them determine the cause. Just giving you my experience. Many reasons for neuropathy, so you have some reasons to be having it, what with your radiation, and problems with your neck. I realy hope you find an answer soon, as this is really an annoying problem. Hugs, Judy

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

I had carpal tunnel surgery on both wrists 6 years ago. I was dropping things all the time. I could no longer hold leather purses so I sold them and bought Vera Bradley. My hands hurt to hold the steering wheel. I've only recently noticed some cramping in my hands but that could be do to my crocheting every night while watching tv. When it gets bad I just take a break.

5 years ago I had an excrutiating headache that gave me some numbness in the left side of my face for 3 months. An MRI was done and showed I had 3 collapsed discs in my neck. I saw a neurologist and he explained so much - I was having other symptoms and never put them all together - limping gait, weakness, numbness in feet, bladder problems, buttoning problems.

In Jan 2008 I had 3 disc fusion in my neck and I've been doing much better. I do however have lumbar spinal stenosis so when that's acting up I get sciatic pain down my butt into the leg. I also get cramps in my feet occasionally. Right now I'm dealing with a painful knee.

Neuropathy is not fun. Sometimes the drs don't have a plan of attack. It is all so individual. I hope yours improves and you find some relief.
{{hugs}} Char

Mama G
Posts: 764
Joined: Nov 2009

but in my case after being off arimidex for a month and it did not improve the brain scan showed a tumor which is definitely the cause. Now I'm just waiting, hoping and praying that the cyberknife therapy will work and destroy that tumor.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I have neuropathy in my hands and feet. from chemo. started in the feet and then the hands, painful. mostly palms and fingers(all) and my feet, it also goes up my legs in patches (calves) not enitre calf just little pathways. the pain has gotten better. used to be that sheets were to painful for my feet. shoes are a problem. balance issues (improving) I also had it briefly in my eyes. Now after returning to work they are really barking, and swelling makes it worse. I take B6 for this, also tried neurontin, but sid not tolerate it. i am on tamoxifen now.

TP123
Posts: 53
Joined: Oct 2010

I am currently on Taxol. My neuropathy started in my right foot,middle toes only. Next advanced to the entire sole of my foot. Then left foot toes and both thumbs. Then both thumbs, feet, and pinkies. It has come and gone each week so I'm hoping that it won't be permanent. It has felt needle point tingly to a little painful, but not bad. It is expected with Taxol but they are carefully monitoring to make sure it isn't permanent. I don't know if that is what you needed to know because I haven't progressed to the "after tx. pills" yet. Best of luck to you Janelle. Teresa

linpsu's picture
linpsu
Posts: 727
Joined: Mar 2010

My neuropathy started in my feet after my first chemo treatment(A/C). It did progress to my hands and fingers, but that has since gone away. However, my feet are still really bad. I get up during the night with the pain and shooting electrical currents up my leg. Trying B6 as suggested by my oncologist but that has not helped yet.

I did have a neck injury about 2 years ago which resulted in surgery - a fusion between C5-C6 and C6-C7 with a metal rod. I still have a lot of pain down my arm and into my hands and fingers with that as well. But that is different from the neuropathy pain. Thank God for Vicodin!

Linda

phoenixrising's picture
phoenixrising
Posts: 1510
Joined: Feb 2007

Hi Janelle, sorry you're going through all that pain. One thing to think of is the B vitamins. I believe a deficiency in B12 and B6 (?) can also cause numbness and tingling. My neuropathy was a side benefit of Taxotere in early 07 which I still complain of. Here is a good article to check out and see if it pertains to you:

http://emedicine.medscape.com/article/1171558-overview

Sorry, I've forgotten how to post a live link :( Hope you find some relief.

hugs
jan

upnorthlive57
Posts: 41
Joined: Jul 2010

yes the feet have it really bad wearing shoes is almost the most painful experience but if you work you wear them, actually I take the shoes off and my feet are under my desk. Vicadin is the only meds that work for me. My onc said it comes from chemo or arimidex I have had chemo and am now on the other. Whatever there needs to be something that works for the pain, and they need to track the cause down...Janelle you are not alone I know exactly where you are coming from and its not fun. I will try almost anything for relief. my fingers have just a slight problem.

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