Arm tingling/numbness from Aromasin?

lea321

I was on Aromasin for only 2 weeks, and in addition to knee pain/stiffness and fatigue, I was having terrible numbness and tingling in my arms and fingers.  Mainly at night (from sleeping on my side)  this cause me to wake up several times (hence the fatigue).  It is worse on my right arm (side of my bc) but the left one does it too.  I am seeing my doc today, but I wondered if anyone else had these SE's.  I have been trying to get back into my excersise routine, but it is difficult when my arms don't work like they should!  I have been off of it for 10 days or so, and I am still having problems.  Anyone else??

Mom_of_boys

Thank you for asking this question!  I, too, have decided to give Aromasin a try and have been on it for approximately 2 weeks.  I use the computer daily and my arm is giving me horrible fits.  I would love to know what your doctor says.  I have an appt with my onc next week about whether I am going to stay on Aromasin or not and plan on asking as well.

~Jan~

knowledgeforpower

I have been on Aromasin since the end of May.  I have joint pain and stiffness in my hands, feet, and knees.  I have a pain that runs down the inside of my upper arm, across my lower arm, and into my outer wrist.  Both of my hands fall asleep at night.  I am thinking the pain in my arm is from cording, even though my surgery was almost a year ago and I only had two nodes removed.  Maybe it is from the Aromasin??? I see my oncologist in about 10 days and I am going to ask her about the pain.  I am thinking maybe I need to see a physical therapist.  Please let us know what your doctor has to say.  Hope the pain/numbness improves soon.

karen1956

I had CTS on Arimidex and deQuervances tendonities in both wrists on Aromasin that ended up with surgery as splints and cortisone shots did not solve.  The CTS went away when I was off AI's for a couple months (tried tamox)...unfortunately, I did not find out that CTS was a side effect of AI's until after surgery on one wrist...but atleast I did not end up with surgery on both wrists...only reason is because I was waiting to do 2nd wrists till after exchange surgery....

My onc is adament that I stay on AI's and do whatever I must to manage the side effects..unfortunately, I have lots.....gabapentin has helped with joint pain and night sweats...

Jan.....when I was doing more work on the computer, my wrists were worse...

can't win for loosing.....side effects from AI's or increase risk of reoccurance!!! 

lea321

I am sorry you ladies are having this trouble as well, but I am somewhat glad I am not alone!  doc said he thinks it is carpal tunnel, and as nothing to do with meds.  (really?!?)  I find it odd that this started within days of taking it, but whatever.  he wants me to see a neurologist.  I am going to wait a bit to see if it improves.  He was more open than I thought he would be of going off meds completely.  I want to learn more about natural foods, supplements, but he gave me a month of femara.  Will do some reaseach and figure this out!  I have heard SE's on Femara are worse...?  I had a hysterectomy and oomph so that will help my chances of no reoccurrace.  ohhh what to do, what to do?!?!  Good luck ladies, would love to hear what your docs say as well!

karen1956

CTS is a listed side effect of Arimidex...can you try CTS splints to see if it helps...that often is the first line of Tx for CTS....side effects of the AI's vary from person to person....you might do better on one than another....not necessarily so that one is worse than the other....and some people have no side effects at all...so it might be worth trying another AI

Mom_of_boys

Karen...  Well, I learn something every single dadgum day!  Did NOT know that CTS was a potential SE. 

I was actually in tears last night, and believe me... that is VERY unusual for me over the pain in my arm.  I, too, had an ooph at the start of this so-called journey.  I'm changing my diet, thinking about exercising more , and definitely on more supplements.  Like you said, Lea, what to do, what to do???

tjassociates

Hello Ladies - New member and so... happy to have found you all. Yes to numbness and tingling in arms during sleep and it wakes me up. Joints hurt so badly I can hardly stand it. Have been on Arimidex and it was awful. Onc put me on Aromasin - has been 8 months now and getting up in the am is painful for feet, wrists, hands. Even have crooked fingers from onset of osteoarthritis. Question - I am seriously considering not taking anything from onc. Religiously take vitamins 0 C and D amongst others. Has the pain, depression and dryness ever made you feel that you want to go off of Aromasin like me? Your help is greatly appreciated.

beau

Hi Tj,

I just happened by your post. You may want to go the a more active thread with more recent posts like the general one on Aromasin or another one. I have been on Arimidex for 2 months and have had a lot of arthritic pain, etc. My hands hurt so much that I couldn't type or write for 2 weeks and it was getting me depressed. I am trying to figure out how to keep going - just got a script for pain killer once a day to help me try to get through this next couple of months before we re-assess. My onc said it is common to take a month off and try again with the same AI with 55% of folks having fewer side effects. He also said switching to another AI or Tamoxifen were other options. I am determined to stay on something - either an AI if I can or I will try Tamoxifen. But all of us have to search out what is best for us personally.

 If you check out, the other threads, you will see a lot of folks trying to figure out what is the right path for them. You don's say what your stage or grade are in your post, but I imagine that could play a part in what you decide. I hope that your pain gets better or that you are at peace with whatever you decide.  Best, Beau

tjassociates

Dear Beau,

I am so grateful to you for taking the time to answer my questions and point me to the right area of the site to get more information. It is so comforting to know there are people like you out there in this crazy world in which we are living.

Many, many thanks.

TJ 

susan_02143

I am now in year six of the aromasin. The first year was not easy. I never had the shooting pains down the arm that you are discussing, but the bone pain required daily pain medication. The fatigue was bad. I often needed a nap at 11am, and I got up at 9am! By 18 months, the bone pain lessened so that pain meds were no longer needed, and the fatigue was intermittent.

I stuck with the aromasin since I was in a Phase III study that covered the cost of the drugs. My point is, at least in my case, it does get better.

Hope this helps. 

tjassociates

Dear Susan,

Thank you for your response. It sounds like I need to stick with Aromasin for 4 more years! Uugh! I am interested in why you are still on Aromasin in year six. Is this because of the study you refer to?

Many, many thanks. 

franchesca2bqq

As you can see you are not alone.  I to started off on tamoxifen and everything was great until my friend also on Tamoxifen had clots that went to her lung- Pulmonary embolisms ..many.  Her doctor said that this was slightly common in women on tamoxifen.  I had my D-dimmer taken a blood test for clots and it was over 800 which means I could have a clot developing somewhere and could have a stroke or Pulmonary embolism as well.  My oncologist took me off Tamoxfen and on arimedix..Ouch!!! Less than a year I got trigger finger and need cortisone shots....Then removed my ovaries and on Aromasin for two years.  The pain tingling and cramps have been god aweful.  I too have had nights of tears.

What helped

Vitamin D 4000u every day

Vitamin E

vitamin A

and other supplements- go see a nutritionist or a naturopath.  They can help lessen the side affects and buy you time to finish your 5 years.  Hang in there.  Do your best... no one would fault you for stoping who has been through this, but try EVERYTHING before you do it.  Myself I am going onto Femara and trying Vit B12 shots and some other suggestions on the site.  I got only two years left.  If it doesnt work well I did my best and will choose feeling good over being on disability or a wheel chair.  Good luck!!

susan_02143

tj,

If you look at my signature, you might see why I am still in treatment. We have combined the aromasin with a monthly faslodex injection to delay the spread of my mets to the bone and organs. By combining these two AI's, we have blocked both estrogen expression paths. Not your path... mine. Keep them separate.  :-)

*susan* 

jogo88

Good to know I'm not alone. I had many of the tingling CTS and trigger thumb symptoms on Arimidex (took it for 6 months)  along with hot flashes, memory loss, sore joints and so on. I was off a month then on Aromasin (for 6 months now). The joint pain and hot flashes continue. The CTS went away but is now back after 6 months. Some days I feel as if I am going crazy. I'm off the Aromasin for a few weeks and will begin again 3 times a week. I am with a new Oncologist and after discussing the options we decided to try lower dosage. He did tell me that there are no real studies about lower dosage effectiveness. I feel so bad, I was just ready to stop all together. The interesting thing is that I have been off for four days and am having bad joint pain and tingling in arms. I just hope it will go away as my body gets back to some semblance of normalcy. Thank all of you for sharing and it is great to have a place to share with people who really understand

steelrose

Sorry you all are having trouble, but it sure is comforting to know I'm not the only one! I'm on Anastrozole (generic Arimidex) and after 6 months, the arm and hand tingles/numbness have arrived. Gee, and just after getting over my cording/lymphedema... The fun continues! At first I thought I was sleeping on my hands and that's why they were numb. Nope... looks like it's another side effect. Has exercise helped anyone in decreasing this?

Thanks...

Rose.

franbog

First time I have read this discussion board, but I would like to share my experience.  5 yrs ago I was treated for BC, and went on Arimidex for 5 months (I later switched to Tamoxifen).  I had many of the symptoms under discussion, and attributed the numbness to having had Taxol.  I also had wicked joint pain, which I knew was from the Arimidex.  At the time, I started receiving some acupuncture, and IT REALLY SEEMED TO HELP with the numbness.  Give it a try. 

I did not know that CTS symptons can result from AI inhibitors.  I have recently completed more chemo and radiation, and am on Femara.  All of the same sympoms are back.  Although it certainly is possible that as I was receiving acupuncture 5 years ago, the symptoms were abating anyway, I will be getting more acupuncture soon to try and relieve the side effects. 

Tracy57

What a relief to find this site! I have been on Aromasin for perhaps a year now. Hopeless with dates. The last few weeks have been suddenly suffering from numb and tingling hands at night. Quite debilitating. And though I'm not happy to hear of similar situations I'm happy to know it's probably due to the drug. My surgeon recently confided that many women are overprescribed these drugs because it's one size fits all. I am of slight build and yet someone of larger proportions will be prescribed the same dose. So she suggested I halve the dose for a while. I was in terrible pain in my hands when I first started taking it. Couldn't peg washing on the line. Hooray I hear you say! But after using a very specific herbal mix from my herbalist, that pain has abated. And that herbal mix is also helping my bones. De Quervain's tenosynovitis was next and cortisone injections failed so I too have just had an operation to relieve that. I am pleased to hear acupuncture may relieve the tingling and will get on to that poste haste. And shall keep you posted. Thank you all for sharing . It is extremely important to hear how everyone is travelling. Best wishes to you all. Tracy

Denise-G

TM60 - I've been on Ariidex for 5 years on my way to 10 or 15. Anyway, my hands and fingers would be numb and "fall asleep"

for probably the first two years. Suddenly, it subsided, and I never have that issue any more.

Tracy57

Thank you so much Denise for your comment. I very much appreciate it. And I wish you well. Tracy