Make Sure to Wean Off Tamoxifen Slowly

JoAnn_K

I started Tamoxifen in January 2009 and abruptly stopped in January 2014 when the five years were over. As a result, I entered a "hormone storm." I had balance issues for nearly a year and occasionally still experience them. I woke up in the middle of the night or early morning with swirling nightmares and debilitating dizziness and nausea coupled with hot flashes and cold sweats, that often lasted through the next day, and I would have to sit in a dark room with quiet to resolve the discomfort. I also developed a tremor and speech articulation issues - slurred speech and my intonation changed. I went to a neurologist, had a negative MRI and MRA (so no circulatory issues or tumors), then a tremor specialist, all after I saw my internist who ran tests and there was nothing that clearly shone through as a cause. Finally, after a long period of time, they attributed the symptoms to a "storm" caused by the abrupt removal of Tamoxifen. I should have tapered off slowly rather than cold turkey. I haven't been quite the same since. This happened almost 2-1/2 years ago, but I am 90% improved. When I get stressed or very tired, the symptoms return.

edwards750

Wow Joann that really sucks. You finally get to quit the drug and all hell breaks loose. I'm going to ask my Oncologist about fallout when my time is up in August. That will b my 5 year milestone.

Did you suffer a lot while taking the drug? I really haven't but lots of people have and pretty debilitating side effects.

Hope you feel better soon. You should be feeling better not taking on more problems. You just can't win sometimes.

Diane

rleepac

Typically, if you didn't have to taper up on a med, you shouldn't have to taper down. However...I have had nothing but trouble with Tamoxifen so your story doesn't surprise me in the least! Sorry you've had to go through all that

dtad

IMO you should taper on and off this drug. Its very powerful and 5 years is a long time!

GirlFriday

This is interesting! I was just diagnosed with a blood clot...so I stopped taking T...meeting with the Onc to discuss...but I have been so dizzy since I stopped taking it. I keep thinking the floor is moving! Thanks for posting this! I will definitely discuss this with my onc!