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Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?
Breast Cancer | Last Active: Nov 2 9:07am | Replies (291)Comment receiving replies
I have had to come off my AI med because of bilateral hand and wrist pain. I could not tie my shoes or pick up a fork and had pain in my hands that would awaken me. I certainly also had other irritating side effects like nausea, dry itchy eyes, hair loss, brain fog. I have now been off for a month. The nausea is at least gone but bilateral hand pain is still here. Can anyone tell me if this pain and hand dysfunction will go away or are the drugs effect permanent. How long does it take to if ever reverse these effects.? I am very little and clearly the AI did its job in lowering whatever estrogen I had. I had begged my oncologist to check estrone and estradiol levels before I started the drugs and after I had been in them for 6 months when side effects were becoming more noticeable. The doctor refused saying they do not have good standard clinical tests to measure these levels. I found that interesting as in any drug study with these drugs, these levels are measured. I was more interested not in the specific level but the percent of change. Honestly, I have felt like I aged 10 years after being on this drug for 9 months. Many thanks for listening!! Wish everyone a healthy New Year!!
Replies to "I have had to come off my AI med because of bilateral hand and wrist pain...."
I was on Anastrozole for 12 months - had to beg my oncologist to switch it for me - I had to threaten to stop taking anything. My hand pain was so bad it was effecting my life - it was a constant 7. She switched me to Exemestane (after I went to a Rheumatologist to make sure nothing else made my hands hurt). It took 3 months for the hand pain to go away - I mostly have a level 1 or 0 - but it took 3 months. I still have insomnia - I take CALM for sleep - it's just magnesium but it really helps. I've now completed 3 yrs. total and am looking forward to the end of 5 years. I had a serious talk with my doctor about whether I could stop at 5 years. She agreed I could. Thought continuing it longer would only reduce my re-occurrence odds by maybe < 2%. I plan on stopping it November 2023. My hair loss stabilized. Also on anastrozole my toes and shoulders hurt as well - that is all gone. I read like 40% of women stop all AI's from the side effects. I wish doctors took the side effects more seriously. My hand pain resolved at about 12 weeks - good luck to you!
My oncologist tests hormone levels before putting a patient on aromatase inhibitors and also later to monitor the change in them. I can't opine as to the effectiveness of the tests but he's at a world-renowned medical center and seems conservative in doing only what makes sense.
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I hate that you are having these side effects. I will say that I notice any slight overuse of my hands these days. This is a fairly new thing for me, and someone was talking about hand pain on one of the other threads. I don’t know if this is from the drug or the aging that ensues from a lack of estrogen. She mentioned knitting and I got to thinking I have been spinning and knitting less these last two years. So I started again this week and maybe it is less mouse and typing on a screen, and maybe it is more knitting, but it seems better.
Unfortunately I have aged much faster than my non cancer friends. I look and feel much older than my years. Someone at the barn said “girls our age” the other day, I didn’t mention that she is thirty years my senior. Old age is a gift that many don’t receive, so I am grateful for it, even if it is a bit premature.
Have you spoken to your doctor about the possibility of trying one of the other hormone therapies?