Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?

Posted by christinej @christinej, Jul 24, 2018

Monday, July 23rd, after consulting with Dr. Loprinzi, we decided to have me stop taking anastrozole. (Arimidex). It has been 5 years since I started the drug after breast cancer surgery and radiation. Has anyone stopped this drug and had any withdrawal symptoms? The nurse from Blue Group sent me an email today saying that there are no withdrawal symptoms after stopping this drug. Soooooooooooooo, is this all in my head? Definitely having some type of withdrawal.

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@smspaz59

I have been on Anastrozole for almost 2 months, take it at night. I am just now experiencing some dizziness, nausea, loss of appetite. Has anyone experienced any of these symptoms after 2 months of taking?

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Yes. They wanted me to take it in the morning, but I didn't feel well the entire day, so I started taking it at night. It has been one year eight months. I have osteopenia, tiredness and hair loss. I am only going to take it for two years and I am going to wean myself off. I am also developing diabetes when I was fine before taking this drug. excessive calcium is another bad thing for the body. Question everyone about the drugs and side effects. Your local pharmacist is a great person if you have one who will take the time for a conversation. I had two types of breast cancer, one in each breast. Now I discovered that a double mastectomy was not necessarily the treatment needed. A little late on the info. However, surgeons don't get paid unless they cut. Had I been able to talk to the oncologist first I would have chosen a different path. I don't want to discourage anyone, but the more information women have before their bodies are disfigured and the treatments the better. Breast cancer did not run in my family, so how did this happen? The more pills and different tests you are subjected to, I think the better chance of developing cancers.

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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!!

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@cedar75

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!!

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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?

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@cedar75

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!!

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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!

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@kathyomaha55

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!

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Thank you for your reply. The timeline was very helpful. I was on exemestane. The insomnia has gotten better. The best to you!!

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Has anyone developed a rash from this drud

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@sherry1

Has anyone developed a rash from this drud

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Initially, when I started on Anastrozole, I developed a rash directly over the area where I received proton beam therapy. It lasted about 10 days or so and then resolved after using some Josie Maran argan balm.

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@cancersucks

It’s related to the drug and it may take time to get energy back but it will come back . I push myself to do what ever I have to get done . I have been off it 2 months

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most of these comments are 2-3 years old. I just finished my second round of 5 years on Anastrozole and am wondering about potential long term effects this will have done to my body. I finished taking them just 2 days ago so haven't yet experienced any side effects.

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@colleenyoung

Welcome to Connect, @christinej
I'm tagging a few other members who have mentioned taking anastrozole for some time such as @wandering @susanao1 @itskeenerific @judymroz @cindylb @chamisaand @berit. I'm not sure if all have finished AI treatment.

Christine, what symptoms are you experiencing?

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Hi Colleen - is this thread still active?

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@suepeet

Hi Colleen - is this thread still active?

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Not Colleen, but absolutely yes, welcome back. I finished a long course as well. I can’t say the side effects of stopping were much different than being on the drug. I am going to say after all of the years of endocrine treatment, plus oopherectomy, I am well and truly menopausal. Many side effects I have are related to that, osteoporosis leading to multiple fractures in an accident resulted in some bone pain hanging on. Arthritis is definitely a thing, and lest we forget the hot flashes. I could heat the county if we could harness them.
Congratulations on getting through the to the end. How are you doing? Are you excited to be done? How did you come to do two 5 year stints?

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