Arimidex - Coping with the SE's

When I first started Anastrozole I had awful side effects. Muscle and joint pain so bad I could barely hobble. I couldn't even hold a pen. My Dr did give me something to help me sleep. I only used it for a very short period of time and am sleeping well now unaided.

I changed the time of day I took my AI from morning to evening.

After 3 terrible months my Oncologist told me to have a holiday from it. I had a 2 week break (was so nice) then I re-started on the name brand Arimidex. The improvement is astounding. Yes I have the odd ache and pain but it is nothing like it was. It's very tolerable. I'm hoping it continues that way.

AI's are the big weapon in our arsenal when fighting ER+ BC. I hope you can find one that works for you. Donna.

Hi 509337! I received a medical marijuana card with my cancer diagnosis and I am a firm believer in it's abilities to ease discomfort. It got me through chemo by helping with my nausea and the bone pain from Neulasta shots better than any of the prescription meds. I'm one year out from chemo but now dealing with nasty neuropathy along with joint pain from Exemestane. (Also developing numbness and trigger finger...hooray!) It really helps as an analgesic. You don't have to smoke it; you can get tinctures or edibles. If you do go this route (legally, please) ask the dispensary for strains that are specific for pain management. These really won't get you "high". It can also help you sleep. In states with medical marijuana legalization, you are pretty much a shoe-in for getting a card with a cancer diagnosis. I honestly wish I wasn't a "shoe-in", but having access to marijuana has really been helpful in managing my pain. I plan on using it indefinitely.

Has anyone experienced a bad rash from anastrozole? I developed an extremely itchy rash six weeks ago. Started at my ankles then went up my legs. My oncologist held off on my herceptin for 3 weeks but the rash did not go away. Then they took away the anastrozole and gave me herceptin again. Two weeks after receiving the herceptin the rash flared up this time on my upper body. Six weeks later I still have the rash although it is starting to subside. Now they took away herceptin again for 3 weeks, so I am not taking anything at this time. Oncologist doesn't think the drugs are the cause of my rash but I don't believe it.

Any input would be appreciated. Thanks!

Losiannie8,

Missed your post until now. It can be really hard to tease out what is causing a rash. It might help to go to a dermatologist or allergist, especially if you have a lot more herceptin to go.

I've had many such rashes and hives over the years. It can take me months to figure out the cause sometimes, but over the years I've gotten better at figuring it out. I've used googling the better medical sites to advantage, but this isn't for everyone.

If you can't get the help of a dermatologist or allergist, then keep a log of everything you eat, put on your body and med you take. This may help you tease out the problem.

Sophiee, please let me know which way your count goes. I am hoping my medical doc will redo the test to monitor.

Sophiee, I see my medical doc on 10/17. I am hoping he reorders blood work. MO won'd do anything until I start having problems.

Cutie, I was told, it cuts the risk in half.

Brutersmom my white blood cell count is within normal range. Don't know why it dropped, i'm just happy it went back up! Keep me posted about yours.

Hello Everybody,  I started out on Arimidex in 2010 and have been on anastrozole for about 4 of the 6 years.  Night sweats, occasional hot flashes, mild headache almost nightly upon lying down, tingling feet upon rising (nothing serious, just takes a minute to get going), and insomnia(toss/turn almost daily but not tired during the day, thank goodness).  There are others like the occasional weird pain on either side.   Recently, I've noticed with the foot tingling is occurring during the day and there is some light swelling in the same foot.  Has anyone experienced swelling?    P.S.  I'm undecided if I will complete a full 10 year regimen.  Thoughts and experiences welcomed. 

Hi, Deb, Weight has long been an issue for me, before cancer and Arimidex/Anastrozole. I did hear a nutritionist say that if you plateau or are stuck to try having no carbs in the evening for a week. So dinner should have protein and lots of veggies/salad but no potato, rice, pasta, bread or even fruit at that time of day. Somehow it can kickstart weight loss. Have the carbs in moderation earlier in the day. Not sure if it works. Just passing along a suggestion.

I haven't been able to lose any weight since being on this pill - its crazy... my doctor said, oh some people gain maybe 5 lbs but that's all - yeah, right! I have at least 40 pounds to lose... so disgusted!

Tips on carbs absolutely correct. I've been on arimidex almost 8 years and had gained 30 lbs. In November 2013 I was at 202 lbs. Cut all carbs for at least 6 weeks, only eat them very sparingly ever since. Joined a gym and lost 40 lbs which I have kept off now for 3 years. I do exercise 5-6 days a week (but I'm retired so easier for me!). It's not easy because you have to be more motivated with action not words and it will take time. Don't think of it as a "diet" or "exercise" but as developing a healthy lifestyle because your life depends on it. Good luck.

Hi everyone,

I have not posted in quite a long time but since my doctor just took me off exemestane, after being on it for almost 5 years, I found I had a few questions that maybe someone knows about. Did anyone find they lost weight after stopping the medication? I have been struggling with my buddha belly and inability to lose weight for a couple years now. I don't eat sugar or flour and weigh and measure all my food but have had almost no weight loss since getting really strict with my food intake. I have slowly gone from a size 8 to a size 14-16 in the past 5 years. My clothes don't fit at all but at least I am cancer free. The nutritionist says at this point I must exercise a lot more. Have people found once they go off the med they lose weight?

Also, since stopping the medication very recently , I seem to be having even more sweating to the point of my hair in the back of my head getting wet ? Did other women experience that too?

Do most women after they stop the AI or estrogen reducing medication, get tested with the breast cancer index which apparently uses a sample of one's original tumor to predict the chance of reoccurence in the next 5 years.

Thanks for any information, Serenity/wisdom

Thanks WndrWoman......I will definitely try that. I am desperate for any suggestions.

Great news Brutersmom! I was wondering about you.