I was on arimadex for about two weeks when I started having feelings of electricity running up and down the inside of both arms one morning. This progressed to pins and needles in my hands when trying to get in a comfortable sleep position. Shortly after the onset of the arm discomfort I began radiation to my left breast. I had daily radiation for two months. The pins and needles hung in there and my oncologist sent me to a hand specialist as a was loosing the motion of my hands and fingers. ( I had no reason to have carpel tunnel and no previous symptoms) I had carpel tunnel surgery on the right side. For a while things seem good. I had two months of occupational therapy. I was also switched from arimadex to aromasin before the surgery. Gradually my discomfort has increased again. I can barely make fists in either hand and I have daily chronic achy arms and tendinitis in one elbow and one upper arm. I golf and garden and may have have increased the discomfort. Right now it is worsening to the point were I am very uncomfortable and lack motion and use of my arms, mostly the left one due to the elbow. Ibuprofin (600mg) or aleve help but they are just a camoflauge that doesn't last. Has anyone else experienced any of this? My oncol does not want to believe that the arimadix was the origin of this mess. However, online a ran into some comments about it being possible.
Hi -Aromatase inhibitors (Arimidex and Aromasin, as well as Femara) have the well documented side effect of joint and bone pain. For some women, it's so significant that they can't take these drugs. What you experience sounds more like pure carpal tunnel, with the pins and needles, which would indicate nerve involvement, rather than pure joint and bone pain. However, some new studies are pointing to AI's also encouraging both carpal tunnel, and rotator cuff problems.
So the carpal tunnel may indeed all be coincidence, as your doctor says. Particularly since it started within 2 weeks of starting Arimidex, which is pretty quick for those particular side effects to have developed. But they may all be connected. If you become uncomfortable enough top stop the Aromasin and everything subsides, then you'll know. So you've got a decision to make: take a break from a drug that's proven to lower your recurrence risk, or continue with the pain? Tough one, I know... Good luck- PJH
Yes, I am on Aromasin and have very sore elbows and arms. From the elbow to my hands seem to ache daily. Some days worse than others. I was worried that the cancer was spreading to my bones! I did not have lymph node involvement so this seems unlikely but still a worry. It was comforting when I read someone else has simular symptoms.
Glad you're feeling more at ease - if not physically better! Joint and bone pain are very well known symptoms of AIs. Hopefully you can hang in there - as AIs have also been proven quite effective at preventing a recurrence. PJH
I was on Arimidex for 4 months when my fingers started to go numb in both hands. Oncologist said it was not the drug. At 6 months my hands were burning so bad I could not touch anything, fingers triggering, cramping. Severe inflammation. Blood pressure up 45 points. Cholesterol up 35 pts. Went off the drug. Inflammation reduced & blood pressure normal. Left with terrible carpel tunnel in left hand. No previous history. Been to rheumatologist, neurologist, hand doctor, pain management. Can't use left hand at all & I am left handed. Will probably need surgery. Am on pain meds & anti inflammatory meds. Starting to think about calling a lawyer.
I have been on aromasin since July 2009 and I am having the same problems. I have made the decision to stop the medication until I meet with my oncologist. I am 53 years old and feel like I am being crippled by this medication. The carpal tunnel symptoms started 2 months ago and have gotten worse.
I too was on arimidex and have shoulder pain. My doctor is saying it is rotator cuff. I blame the arimidex but I doubt if the doctors will, and I will see when I go to see him again soon. There are several places on the internet that say a lot of women are having this problem on this medication. Someone I worked with, who also had breast cancer and on this drug had bad rotator cuff problems and other joint pain. My pain is in shoulder, wrist,fingers and going into the back of neck now and other shoulder. I went off the medicine and am about 50% better but the doctor wants to discuss this with me. I am sure he will try to talk me into going back on something. That's another thing, I tried all of them and got side effects from them all. The Aromasin caused double vision so bad I could not drive. Shortly after I went off, things were normal again so I know these drugs cause problems. My lymph nodes were negative and I have been on various meds for 4 & 1/2 years now and am thinking of just quiting them all. My breast cancer was a stage 1, so I was lucky there too. Is there anyone out there who went off early (before the 5 years), as I would like to know how they are doing?
Hi I had stage 1 breast cancer 2007, started out on Tamoxafin and the switched to Aromasin. I was taking it for several months and kept getting worse and worse with tendonitis in my acheles tendons. I have since stopped since 2009 and still have pain, not as bad, but still have a lot of trouble. I just can't live like that. I went to many doctors and therapy, nothing helped. I just read about taking B6 and a multivitamin and I will be trying that. I know the med caused this pain, I wish I would have known. It is hard to do your exercise and sleep well with pain. I gained some weight too with lack of activity due to pain. I am going to take my chances and not take any meds, and try to increase exercise. God is good.
Janet, I'm sorry to hear about all the trouble you experienced while taking Arimidex, and afterwards. I can sympathize - I had terrible back pain towards the end of the 5 years I took it, which thankfully disappeared within weeks of going off the meds. I hope eventually your pain subsides, and you can get your life back. God IS good... PJH
Yes I am smack in the middle of the exact symptoms you are having. I started getting all of of the same ones about three weeks after I started Aramosin generic medication. Both my prime physician and oncologist kept saying it's Carpal Tunnel and get surgery. I wanted to try PT first (it's helped a little) and then found this internet site which educated me on to how many individuals are now having these side effects from this drug. My last post was to ask if anyone is going through this and how long it took to reverse the symptoms after stopping the drug? It is amazing how unknowledgeable these doctors are on this serious side effect of the medication they are prescribing. I've been off of it for four weeks and still suffering the side effects. If you find out anything productive on counteracting the side effects I would appreciate your posting it.
Good luck with getting over yours!
Mae, I've heard that glucosamine chondroitin, which people use for arthritis, has helped some women deal with their aromatase inhibitor pain. Probably worth asking your doctor about it... PJH
Thanks for your suggestion but I am now strongly of the opinion that Doctors have their head in the sand on this one.
You're probably right, Mae. When you think about it - if the doctor went to med. school 10 years ago (or more), and hasn't kept up, then s/he probably isn't up to date at all on AI's, more's the pity... You often have to advocate for youself with cancer treatment, I've found. It's good to be an empowered patient! Best of luck as you move forward with this - PJH
I have been on Exemestane approx. 4 months after radiation for Breast cancer. I now have almost no use of both hands and fore ams are starting to be painful. Hands go numb, tingling, all fingers are triggering, burning of palms and I cannot make a fist. Pain keeps me up at night. CTS was diagnosed but I knew I had not done enough repetitive motion for that diagnosis. I found this site and stopped this medication immediately. Off it for three days now. Please someone out there tell me this will start to reverse this dibilitating condition. I am doing PT and I start with a new oncologist next month? Do they (Doctors) really not know this information or just not menmtion it?
Hope to hear something positive back.
Mae, did you have chemo? This sounds like chemo side effects. It's true Aromasin (exemestane) can cause joint pain, but it sounds like you've gone way beyond that with the numness and tingling, to say nothing of pain that keeps you awake at night.
It's not a good idea to stop your Aromasin; the preventive effect against recurrence it offers is quickly lost when you stop taking it. But of course, it's up to you. Please discuss this with your new oncologist ASAP, OK? And find out how much protection it's offering you; your doctor will be able to give you your absolute risk of recurrence with and without Aromasin. If the difference is small enough, you may very well decide to just stay off it. If it's significant, though, you'll want to think twice about taking Aromasin; is the increased protection worth the side effects, or not? Good luck - PJH
I did not have chemo just six weeks radiation. My lympnodes and surrounding areas were clean. I caught it at a very early stage. My reaction to exemestane was extreme. I will definitely discuss it with the new oncologist. But no use of my hands and arms for me is not an option. So I hope there is an alternative. Thanks for your response and concern.
Mae, ask your new oncologist about tamoxifen - while not quite as effective inpost-menopausal women as an aromatase inhibitor, it was the drug of choice for 30 years, before AIs made their appearance. And it doesn't come with the bone/joint issues... Hope you find a good solution. PJH
How are you doing?
10 years out, Mae, I'm doing pretty well. Some long-term chemo side effect issues, but nothing I can't deal with. And no recurrence, thank God. I wish you the same! And do ask about tamoxifen, OK? I didn't have nearly the side effects with that as I did with Arimidex... Take care - PJH