Please, please, please, are there any ladies out there who could answer this question:-
After one has finished the course of treatment on Arimidex does one go back to ‘normal’ afterwards? Do the adverse side effects then disappear, eg constant aching, apathy, mood swings, sleeplessness, ‘spaced out’ feelings etc, etc.?
Please, is there anyone who has been on Arimidex for 5 years, who has now finished?
Can you tell me if these horrid side effects continue after you have stopped taking them after you have completed the course of 5 years?
I would really apreciate a reply if possible. Thanks.
Hi Christiane
Sorry you haven’t received any responses to you post as yet. While you’re waiting for your fellow forum users to reply I have attached a link to information on BCC’s Peer Support Service. This is a telephone based support service provided by trained volunteers, offering another way to make contact with others who have been through similar breast cancer treatment:
breastcancercare.org.uk/server/show/nav.518
Please do also remember that the BCC Helpline offers support and information. Calls to the Helpline are free, lines are usually open Mon – Fri 9am to 5pm and Sat 9am to 2pm, although due to the bank holiday they will now reopen on Tuesday 1st September at 9am.
I hope this is useful,
Kind regards,
Kate, BCC Facilitator
I only took arimidex for a year because of the side effects. When i came off it, the side effects DID stop quite quickly.I no longer have aches and pains etc. However, I have no ovaries anyway so some menopausal symptoms returned but not like on the arimidex. i am now on tamoxifen and hoping that I willnot have unbearable side effects. I hope this helps christiane.
R xxx
Thank you, rachy7 and Kate(BCC). I really do appreciate your replies. Rachy7, your comments are reassuring.
I was hoping there may be someone who has taken Arimidex for 5 years and stopped because I am wondering if the longer I am on them, the longer it will take for the side effects to go.
Is there anyone who can answer this?
Hi Christiane,
I cannot answer your question from personal experience, as I am 14 months away from my last little white pill of poison. And I have been wondering also.
I found an American Breast Cancer Forum where they discuss Arimidex and how long should treatment continue.
One poster, after 5 yrs, stopped Arimidex in May – went through withdrawal symptoms but after three months is starting to feel good. She also reports the joint pains are better, the fatigue went away almost immediately, and generally felt more like herself again.
It’s only one person, but I like it because it gives me hope.
From my own personal experience, I have missed a pill 3 times – and every day I did, I had a nice day – so much so, that I was “aware” of feeling good – then I remembered I didn’t take my pill.
There is one caveat though, estrogen is an anti-inflammatory – so with preventing it from being in our body, if arthritis is an issue – Arimidex may contribute to the condition – which I don’t think is reversible.
I can deal with the pain, but the sleeplessness, fatigue and listlessness are my main concerns. Oh, to be “me” again!!!
Hope this helps,
Thank you, Snow, for replying. So there is a glimmer of hope when we finnish!
I fully endorse your last paragraph about the sleeplessness, fatigue and listlessness. I couldn’t have put it better myself and it looks as though now there is hope that this will disappear when we both finish.
I note the time that you wrote this comment - 2am. You must be up in the middle of the night making cups of tea like me! Thanks for taking the time in the middle of the night to reply. It is appreciated. X
christiane - a word of encouragement. I have been on Arimidex for two and a half years after a recurrence of my BC after 17 years. I was previously on Tamoxifen for 3 years but stopped because of the dire side effects which ruined my quality of life. The side effects of Arimidex settled after a few months but I still get flushes in the night (I take my pill at night)and cannot remember the last time I slept through! I wake up every morning with my heart beating fast and have a hot flush even though my oncologist thinks I am making this up!! Other side effects, I sometimes think I should not blame on Arimidex but on getting older.
What a burden we all have to live with but keep smiling - it helps.
How unfortunate, Olivia07, to have it return after 17 years.
You may be right that a lot of the side effects I am experiencing from Arimidex may be just signs of getting older - as I am already 3 years older than when I started - and by the time I finish I will 5 years older. So maybe not all the so-called side effects will disappear when I finish. It may well be ‘anno domini’!
Hopefully the little white pill will protect me and you and I really must remember your advice to keep smiling!
Hi Christine, i hope i can be of some help.I took my last arimidex on tuesday and am experiencing some withdrawal symptoms - lots of hot sweats and joint aches but im encouraged by a friend of mine who finished her course a month ago and feels great, so im looking forward to feeling that way too !
If its any use i can post my progress maybe on a monthly basis and let you know how things are and hopefully offer you some reassurance ? I would also like to hear how others have felt after finishing their arimdex too ?
I came off Arimidex December 2012 after 5 years. I was one of the more fortunate of us as I had few side effects apart from fingers locking on occasion and the onset of osteopenia. I have not noticed any major changes since coming off the drug, though my fingers don’t lock now and I can grip better. On a positive note I am enjoying all life offers and the cancer and hormone therapy have not held me back. Thankfully I am just as normal now as I was 6 years ago, mind you those that know me may think otherwise!
I am in agony with Arimidex. Can’t sleep, in pain and my fingers are stiff, hips are sore and my shoulders are in agony. I have three more years of this, ugh.
I came off Arimidex two weeks ago after being on it for five years. The oncologist said that because I was having such bad side effects that staying on it would not have any benefit. I have had so much pain in both hands and feet that it has affected my life. I am now hoping that the side effects will improve and have already noticed that I’m not as tired and don’t have palpitations anymore. I have been told that it will take about three months for the pains to go and if not I may have to see a rheumatologist. I am grateful to the NHS that my cancer has gone (I had a mastectomy, reconstruction with implant followed by chemo then Arimidex). I will let you know if things improve.
Hopefully everyone who has finished their treatment will stay fit and healthy.
best wishes to you all.
Chris
Hi, Christiane, I just stopped Arimidex myself a couple weeks ago myself after 5 hears and I had all the side effects exactly you describe. So far I feel a little more energy but still waiting to feel really good again–hard to remember, but know I did. Of course I have to remember I’m now 5 yrs older . . . actually having a little insomnia–hormones probably all crazy even tho I just turned 64. I just read someone else said it takes a few months. I think we’ll both return to “normal” in a couple months–let me know if you do–would be so great after feeling so marginal for 5 hears. But we’re alive anyway!
I was on arimidex (generic is Anastrozole) for 5 years. I stopped taking this pill about 1 month ago. I realized one day that I did not have the constant aches and pains that had bothered me for 5 years. The first 3 years were the worst. Felt like I had arthritis. Getting up from a chair was torture. The past year it seemed to have improved, but after 5 years was I just getting used to it. Now that I have finished my 5 year regimin my body does not have the aches and pains I had gotten accustomed to. Hooray!
There is hope ladies. Hang in there. I’m 61 now but my bones feel better than they did after I took
Anastrozole during the 5 years.
I’m about halfway through my 5 years. Like most of you, I’ve had a host of side effects (hand swelling and pain, insomnia, loss of focus, lack of energy, acne, etc.). It’s encouraging to know that these will go away once I’m done with the med.
I’m in the US. I can get medical marijuana in my state and it’s helped a lot with the insomnia. Hopefully it can help some of you too.
I have just had my last yearly check up today and also told that my consultant will be writing to my doctor to tell her not to prescribe letrozole any more. I don’t really know how will cope with not taking this pill it has given me peace of mind for the last five years. I did ask if I could stay on this for longer but he told me he would agree to this. I’m a little confused as all the reports you now read recommend 10 years
I can only think it’s because mine was DCIS. I would like to hear your feeling of this. X
Hi there, bit late coming to the party but I thought I’d let you know that I’ve been on Anastrazole for 9 years now. The SE’s did ease alot over the years, hair thinning is my only major issue now (only 47 so not liking the thin hair look). I spoke to a friend recently who is a few months ahead of me on her journey and she said the same. Some of the effects will no doubt go - but some we will be left with. I’m just glad to still be here after 9 years :).
I read recently that the recommendations coming in from the US is now 15 years on AI’s so who knows how long we will need to take them in the end 
I am so excited to have found this! I have been on Arimdex for 2-1/2 yrs. When I contacted my dr about all the horrid side effects and what would happen if I got off of it, his answer was the protocol had changed and now it is 10 yrs!! I started crying. I asked for alternatives and was told this was the protocal. A few days later it struck me - MY doctor wasn’t MY doctor, he is the health care providers doctor. It is a business and I as an individual doesn’t work in that system.
I have 12 of the listed side effects. It is so bad that I avoid sex with my husband because of the pain, my knees hurt so bad I walk like I’m 90 if I sit too long (I’m 57) and I don’t remember the last time I got 6 hours of sleep.
Because of this I have decided to explore for 60 days.
During this time I am doing a detox, vitamin routine and drastic dietary change (grass fed& finished meat) organic veggies, etc.
I figure I want to live with a quality that feels like living and still live a long time.
The cost is there but I plan on saving on my co-pays!
I will keep you “abreast” of happenings. I’m so excited it made my humor come back!!
Hello,
I am new to the forum, I am a 5 yr survivor Stage 1 IDC. I was on Arimidex for 5 yrs and just took my last pill 2/28/17. Initially my provider asked me to think about taking it for 10 yrs but at my last visit was told that studies show no benefit so was advised to stop med. I have osteopenia, hair thinning and most recently my cholesterol levels had started to rise. I am told this can also be a side effect with Arimidex. I have also been on Effexor to help with hot flashes and now have to be weaned off of this too!! By the way Mayo discharged me from their services after seeing them every 6 mos for the last 5 yrs; my provider said their pt load is getting to big so they were instructed to discharge pts like me who are now considered “low-risk”. I was told I can f/ u yearly with my PCP and that this should be a “happy time” for me. Needless to say I am a nervous wreck!!!