arimidex

Cynthia451

Hello Everyone,

My name is Cynthia and I had a double mastectomy with reconstruction on 5/19/20. I have been on arimidex for about a year and a half and in the first year I had no side effects that really bothered me. But since the since of this year, I have developed the worst joint pain ever (my knees, shoulders, hands). At times it is so unbearable, I can barely stand up and walking up and down stairs is miserable. I also have trigger finger in my right hand and horrible tingling too. I spoke to my oc about this and she said yes arimidex can produce these side effects at times. But, she also had me tested for blood clots because I had lumps in both my legs and recurrence as well. Fortunately everything came up negative. So she then referred my to a pain doctor in the cancer department. He said that people report these issues all the time and that side effects can come up at any time. He said that it's possible that this medicine is producing symptoms of fibromyalgia and he wants me to try a low dose of cymbalta. (Even though it's an antidepressant, he said that it also helps cancer patients with pain.)

I was just wondering if anyone has experienced anything similar and if so, do you take cymbalta? Did it help?

Sincerely,

Cynthia

ThreeTree

Hello Cynthia - I don't have exactly the same issue and I don't take cymbalta, but I do want to thank you for posting about this issue. I take Letrozole and get terrible leg stiffness sometimes that borders on "scary". I also get a lot of tingling/pins and needles all over at times and while it isn't what I would really call "painful" it can be very disconcerting and scary like the leg stiffness. I also have the usual joint and muscle aches that we get with these AI's. My oncologist tends to either dismiss these symptoms as "must be from something else" or offers to switch me to another AI. I've been hesitant to try switching, because they all lower your estrogen and it is the low estrogen that causes the symptoms. I know some do actually do better on a different brand or different drug, but I think from what I've read here, the majority just swap out one set of bad side effects for another. Switching comes with it's own problems of having to wait awhile, then seeing how the new drug does, and then if it's just as bad or worse, and you want to switch back, you might get yet a different and likely bad reaction. For now, I've decided to stick with the devil I know.

I am very curious about and glad you mentioned an oncology pain specialist who does indeed acknowledge and not dismiss all these side effects. I had never heard of one before and am considering seeing if there is one in my system. I would really like to talk to someone who respects the fact that these side effects exist and can be downright debilitating at times. Thanks for letting the rest of know about your experience, and good luck to you also.