side effects after ending arimidex

[Johana Griffith]

I will complete 5 years on Arimidex next fall and wonder about possible side effects after ending treatment. Should I wean myself, or is it ok to simply stop? Also, I'd appreciate any information concerning lessening of joint pain, exhaustion etc. after the treatment ends. Thanks, Jo

[para]

Hi. I also just stopped taking arimidex. I have not been able to find any info on the possible side effects of stopping the drug. I can tell you I have significant neck pain.

[jessica]

para wrote:

Hi. I also just stopped taking arimidex. I have not been able to find any info on the possible side effects of stopping the drug. I can tell you I have significant neck pain.

I am fell like crap and nausua all the time

[Paula Hagen]

I am wanting to know if anyone has refused to take arimidex and pursued a homeopathic path to rebuild their immune system. Shittake mushroom, and other methods used in other countries? Are there any statistics on those people who adopted a healthly anticancer diet such as the one published by John Hopkins and exercise with other suppliments?

[Linda]

para wrote:

Hi. I also just stopped taking arimidex. I have not been able to find any info on the possible side effects of stopping the drug. I can tell you I have significant neck pain.

I stopped taking it about 3 weeks ago and have noticed nothing, including the 20# I gained "falling away" like magic. Maybe one thing- I have been more tired, now that I think of it. Has anyone experienced that?

While I am glad to no longer taking a powerful drug, I am ambivalent about the protection it may have offered. Is anyone else dealing with lingering worries that maybe now.....it will come back? I am a positive person and put these out of my mind most of the time, but still...

[Julie]

I have been on Arimidex for 14 months and just recently started having problems -- joint pain in feet, now in hands, muscle tightness. I want off it but am not sure how -- do I need to wean slowly? If so, how?

[Marilyn]

Julie,
I stopped taking Arimidex 3 1/2 months ago after 23 months on the pill. My doctor told me that I could stop it "cold turkey." I have since heard the same thing. I am still having problems walking, going up stairs, and using my right hand. I went to a hand doctor who gave me a splint to wear on my thumb and directions to ice the area three times a day. The hand is getting better--slowly.

I am beginning physical manipulative therapy hoping that the ache, weakness, and pain in my legs will abate. Also, later hopefully manipulation will help me regain the full use of my right hand.

My oncologist wanted me to go right back on Arimidex. My new oncologist wants me to go on Femara. She has had success with the pill with patients who couldn't tolerate Arimidex. I am still weighing the consequences. I don't want to become more crippled than I already am. In addition, my bone density has dropped considerably, and I would like to wait a few months until my new bone density is taken to see what the current damage is.

[Terry]

Julie wrote:

I have been on Arimidex for 14 months and just recently started having problems -- joint pain in feet, now in hands, muscle tightness. I want off it but am not sure how -- do I need to wean slowly? If so, how?

I'm so glad you posted. I started having tingling about two weeks into it and by the time three months had passed, I was having severe muscle pain and tightness. I've been off for two weeks now (my Dr. said to stop cold-turkey) and while much of the pain is gone, about 50% lingers. I can hardly stand for more than a few seconds and wonder if anyone has a clue how long this will last?

[Kathleen]

I finished my 5 years of Arimidex 2 years ago. During the 5 years of treatment, I found the worst problem for me was the horrible hotflashes that had me running to our attached garage when it was 28degrees f and stripping to cool off. Now after 2 years off the drug, I am experiencing light, almost undetctable, vaginal bleeding. My MD appointment with the preliminary results is Tuesday, and please wish me luck, as I do for all of you.

[Monica QLD Australia]

I stopped taking Arimidex without my oncologist's knowledge 'cold turkey' one month ago after taking it for 5 years. I had terrible bone, joint pains & chronic fatigue. Hands were the first affected - painful bony lumps appeared on knuckles - then started in my toes - but these lumps took a few years to develop. As the years went on, I had more 'bad days' than good days until recently I couldn't remember what it was like to feel 'normal and/or good'. I thought "I'd rather be dead than live - correction,'exist' like this for the rest of my life'. BUT... I have no family or husband that depends on me. If I was a mother I would definitely have more reason to want to stay alive and take Arimidex for the sake of looking after my family despite the side effects I was experiencing.
Then again, I hear that some people have no side affects - half their luck.
At the moment after one month, I am feeling very nauseous, bad headache, having not so much the normal hot flushes, but feel like my body is about to burst into flames - then I'm cold then I can't tell whether I am hot or cold but feel uncomfortable. I will check back in a few weeks and let you know if I feel any better- will time and a very healthy diet heal me? We will see....

[Joan]

Monica I am so relieved to see your post! I stopped Arimidex cold turkey after taking it for five years. I feel awful! Like you, very nauseous and bad headache - thought I was having a stroke! Also very dizzy, and blood pressure is up. I keep thinking it's going to get better and then all of a sudden I feel worse. Also extremely anxious and can't sleep. I'm just glad to know that I am not the only one and there might be more of us out there! Please let me know how you are doing...

[Monica]

Dear Joan, Hang in there as I am starting to slowly feel better. I am eating everything healthy lots of organic fruit and vegetables, fruit juices with gren barley mixed in. Lots of vitamins especially selenium, folic acid and 2 'baby' asprin a day. I used sleeping tablets at night and lots of pain killer at first but slowly weaning myself off all of those too. I was feeling quite 'normal' for a while but had a bad tooth setback and took painkillers again so weaning myself off them again. But it seems that slowly the body does tend to heal as I was not having those awful aches and pains as much and the intensity lessoned. My fingers are limbering up again. My advise is use the sleeping tablets and anti-anxious tablets (serapax) to get you through the worst of the Arimidex withdrawals then wean yourself off those tablets. You need to sleep well as our body does most of its healing when we sleep. And being anxious isn't helping anyone so deal with those side effects first as the drugs used to combat those aren't nearly destructive as the Arimidex is. So in a nut-shell - yes - I am feeling much, much better!

[Joan]

Thank you so much, Monica! So glad for you that you're feeling better and I will take your advice on the diet and supplements. I have found that drinking (sipping) kombucha tea helps some with the nausea but too much of it gives me heartburn so I will try the juice and green barley combo. Also will get something for the anxiety. Isn't it amazing that after all we've been through, now we have to deal with this! You are such a comfort! I wish you radiant good health! J

[Shirley]

I have only been on Arimidex four months and have stopped it. I'm in pain and sick all the time. No quality of life. I will take Tamoxefin in a couple weeks.

[Linda]

I have been taking Arimidex for a little over a year and every possible side effect there is, I have. Achey arms and feet, bone loss, high blood pressure, elevated triglycerides, hair loss... I would like to know from those who have been off the drug if the side effects will go away when I stop

[Dee]

Hi Linda-
I stopped taking arimidex 2 weeks ago and I am feeling tired and depressed I think the drug has taken alot out of me including joint pain wondering if the 20 pds I also gained will come off also would like to know if anyone has a special diet they have tried to get my energy back!

Linda wrote:

<quoted text>
I stopped taking it about 3 weeks ago and have noticed nothing, including the 20# I gained "falling away" like magic. Maybe one thing- I have been more tired, now that I think of it. Has anyone experienced that?
While I am glad to no longer taking a powerful drug, I am ambivalent about the protection it may have offered. Is anyone else dealing with lingering worries that maybe now.....it will come back? I am a positive person and put these out of my mind most of the time, but still...

[Gloria]

I have been taking Arimidex for about 6 weeks now and wasn't sure what I was feeling was the side effects or that I had gone thru a lumpectomy, radiation therapy and then had knee surgery. But I must be feeling side effects since I am very tired and weak, have difficulty breathing with very little physical activity, feel some nausea some days, and my bones, back, and joints ache. It's difficult to do minor yard, garden chores which to me was always enjoyable and thereaputic. Is this what I have to look forward to for the next five years and beyond perhaps? If so, then I guess I will have to learn to take many short breaks during the day. Any other suggestions from all you who have or are experiencing this also?

[Janet Novafornia]

I was on Arimidex for four years - I really had no side effects while on the drug other than the hideous weight gain until about 3 1/2 years in. I started having major stomach issues. I did stop and after a semi-emergency Colonoscopy - all was ok - the stomach symptoms went away. I really had no other side effects going off the meds but now months later, I am having some - fatigue, depressed, etc. There are other things going on in my life and I believe the arimidex is just a part of it....but these drugs don't just magically disappear from your system. Yet, I must say - I am a five year breast cancer survivor so I think it was worth it. Consult with your doctor and see what is the right choice for you. I know some women who didn't do well on arimidex and switched to tamoxifen.

[Cathy]

Shirley wrote:

I have only been on Arimidex four months and have stopped it. I'm in pain and sick all the time. No quality of life. I will take Tamoxefin in a couple weeks.

I have been on arimidex since January. I have been experiencing terrible pain in my hands and the joints of my fingers. When I realized that it may not be arthritis but a side effect of arimiddex, I called my oncologist. He told me to discontinue for 3 to 4 weeks and see if the pain goes away. That way we will know whether it is the arthritis or the arimidex. Did you have this hand and joint pain while on it? Last night was the first night I did not take it, this morning I was light headed and very tired.

[Cathy]

I have boon on arimidex since January. I have been experiencing pain in the joints of my hands. When I realized that it may not be arthritis but a side effect of arimidex, I called my oncologist. He told me to discontinue for 3 to 4 weeks and see if the pain goes away. That way we will know whether it is the arthritis or the arimidex. Did yoiu have this hand and joint pain while on it? Last night was the first night I did not take it, this morning I was light headed and very tired.