side effects after ending arimidex

kathy wrote:

where do i find JUST info about feeling better or worse or whatever after coming off arimidex ? can anyone point me in the right direction ? im looking for hope that anyone out there feels much better ?

Hi Kathy, just picked up your post email. How long have you been off Arimidex? I came off Arimidex last May 2011. Also had my all clear. That in itself gave me a buzz. If you have had the same give your self a pat on the back. What a hurdle to get over. I sometimes think we can listen to much to what others say about themselves. Determination and positivity is the best medicine we can take. OK we may have "after effects" that is only natural. If you stopped taking Arimidex full stop, then you will get after effects; Its like taking any drug for a period of time. So Kathy give your mind a rest from all that negativity, get on with the life you have been given back. Do what you enjoy most. I will admit life is not a bed of roses. But sometimes life is what we make it. So cheer up. Life is good. Let me know how you are coping.
I really wish you all the best. Elizabeth Isle of Wight

Any drug can have adverse side effects. Fosamax for instance can cause Fosamax Femur fractures. Consult your doctor for the list of these side effects before taking the drug. http://www.fosamaxfemurfracturelawsuit.com/fe...

Elizabeth7 wrote:

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Hi Kathy, just picked up your post email. How long have you been off Arimidex? I came off Arimidex last May 2011. Also had my all clear. That in itself gave me a buzz. If you have had the same give your self a pat on the back. What a hurdle to get over. I sometimes think we can listen to much to what others say about themselves. Determination and positivity is the best medicine we can take. OK we may have "after effects" that is only natural. If you stopped taking Arimidex full stop, then you will get after effects; Its like taking any drug for a period of time. So Kathy give your mind a rest from all that negativity, get on with the life you have been given back. Do what you enjoy most. I will admit life is not a bed of roses. But sometimes life is what we make it. So cheer up. Life is good. Let me know how you are coping.
I really wish you all the best. Elizabeth Isle of Wight

Kathy, I can see your question is not answered. I am still on Arimidex so I cannot be of any help to you. There are however many forums on the web, I am sure you can find an answer. Arimidex is considered chemo and you can find out more about it at www.Chemocare.com Your Dr. should be able to help you with your question. I agree with Elizabeth to a point, but oftem times cheering up is much harder to do. It is not that easy when you don't feel well.

Went off arimidex after 8 months. Felt awful...achy muscles, joints, shakey and weak. Almost flu like symptoms. Went off of it this past October and still feel these symptoms. Started tomoxifen over a week ago. Can any one comment or talk about how long symptoms last. Or is it in my head? Thanks

Has anyone experienced anger and teariness after stopping Arimidex?

My doctor told me it takes about 100 days for the symptoms to clear after taking Arimidex. I'll let you know how true that is after I stop in April which is my 5 year mark. As for the teariness and anger - view Arimidex as a drug that has kept you happy for 5 years, now you stop cold turkey and your body and hormones doesn't know what to do. I will tell you what I plan to do to come off Arimidex whether my doctor likes it or not, but I will gradually come off it and start with every other day for a month or so and then every couple of days and then once a week and then once every two weeks and then I am done. I think that gives the body a chance to acclimate itself to the loss of the drug. I'm not a doctor, I'm not telling anyone to do this - this is just what my body is telling me I need to do for it. I listen to my body.

Judy wrote:

Arimidex. Terrible medicine. I took for only 3 month. Even passed out when on it. I have been off it since December and still have the side effects everyone mentions. But lately I have been feeling better. STill ache but way. more energy. THis is bad stuff...t lest it was for me

I have been of of it for three months and I still feel awful

Diane wrote:

Has anyone experienced anger and teariness after stopping Arimidex?

Yes

Jeri wrote:

My doctor told me it takes about 100 days for the symptoms to clear after taking Arimidex. I'll let you know how true that is after I stop in April which is my 5 year mark. As for the teariness and anger - view Arimidex as a drug that has kept you happy for 5 years, now you stop cold turkey and your body and hormones doesn't know what to do. I will tell you what I plan to do to come off Arimidex whether my doctor likes it or not, but I will gradually come off it and start with every other day for a month or so and then every couple of days and then once a week and then once every two weeks and then I am done. I think that gives the body a chance to acclimate itself to the loss of the drug. I'm not a doctor, I'm not telling anyone to do this - this is just what my body is telling me I need to do for it. I listen to my body.

I was on the Anastrozole for 7 months and wemnt off of it in Oct. It has been approx 80 days since I have been off of it and still not feeling well. I will aim for the 100 day mark and hope for the best.

I got off Arimidex Aug 2011. I was on it for the prescribed 5 years...I still feel aches and pains in my joints, muscles and gets very tired towards the end of the day. I have accepted the fact that I may never get rid of them. If I do later on, great. I'm thankful for the fact that I've been on remission for 10 years now.
I go for every 6 month follow up with my oncologist, and get all my bloodworks done, bone density every 2 years, mamogram every year, etc. exercise, eat healthy and stay positive. That's all I can do to make sure I am and hope I will be in remission for a long long time. Good luck everyone.

Since my last post I am further into the hell of Arimidex. I feel like its a suicide pill, great for some people, but for me its destroying me and I am now going for a nuclear bone scan next week to see what is happening to my bones. I can hardly walk or get out of a chair at the moment. I know its the Arimidex as I have come off it twice and felt better after only a few days, but I think the damage is worsening. I see my oncologist in two weeks whom I believe should have seen me sooner than the eight months between appointments, I have been a regular vistor to the emergency department begging to come off this drug and put onto another, but no one has done anything about it. I have even shown them the risks and side effects all highlighted that relate to me and believe I should be stopped taking it, but I am too scared to come off it as I need to prevent the cancer coming back as I have four preteen children to be here for. The arimidex and other treatments that have been extremely aggressive, especially considering I had 1mm of breast cancer have given me horrendous consequences I have only one kidney and the other is damaged, my gallbladder is ruined, my liver is problematic, my bones are ruined and I keep thinking that I am moving closer towards dying than I am towards getting better and that to me is terrible when you hear that early stage breast cancer is curable. Just back to the point about the arimidex causing the bone pain, from my experience -it definitely is. After four days off it on my second break from it, I was almost running after four or five days. As soon as I got back on it, I plunged back into a wreck.

Ive been off it for over a year and still feel terrible.

I've been off it for over a year and still feel the effects of i

First off - I've just read every post here and want to say thank you! I'm 55, had Stage 2 invasive ductal cancer. My lymph nodes were clear. I had a lumpectomy and radiation. I started Arimidex 7 months ago - I started waking in the nights about 3 months ago with my fingers all pulled in like a claw and hurting. The doctor said I was having a typical side effect called
"trigger finger". It hurt, but then the pain in my right thumb has become so painful I can't even pick up my toothbrush. I have depression, weight gain, no memory recall! and terrible fatigue. I'm lucky if I get out of bed by late afternoon on weekends - but have to work during the week. I saw my doctor a week ago, he upped my vitamin D after they took a blood test, told me to stop the arimidex for 2 weeks and start femara after that. I've read everything about it and it sounds exactly like arimidex. I've made a decision to stop taking these drugs. My life has been miserable and I can't do this for another 4 1/2 years. I'll take the risk (which my doc said is 1:10) that it will come back because taking these meds isn't living. Its just existing. Prayers to all.

Additional comment-
In the 8 days since I've stopped taking Arimidex I've had terrible tooth pain. I went to my dentist and she said my teeth are healthy but something is causing the nerves to be alive! I also have an earache and sore throat on the same side - no cold. My thumb is still extremely painful but for the first time I feel better just making this decision. I'll probably seek out a homeopathic doctor to help guide me to feeling healthier.I'm hoping as my body cleanses itself from the arimidex I'll start to regain some of my old happy self again.:-)

My heart and prayers go out to all who have posted above. As I understand the meds, Arimidex, tomoxifen and femara all have similiar side effects. A homeopathic or a naturopath can all offer suggestions for remedies to support our systems which is what we need to support all the systems that are damaged by the meds. The job of the meds is to prevent, stop, eat up the estrogen that is produced by our body. It is a deadly cycle. I know the increased D3 helps; Traumeel (homeopathic remedy for muscle joint and pain) helps (get at a health food store - you want the tabs, though the cream also helps for a topical). Our bodies have a memory and when they are on meds for 5 years, they hold that memory until we change it. Doing things we once did pain-free and telling our bodies it is okay to do this again pain-free will eventually reprogram the body to respond in the new pain-free manner. Embrace the tears and anger, it is your body's response to the meds and what they have taken away from the body. We all beat cancer, we can beat the residual pain too! Hang in there!

Lori K wrote:

Additional comment-
In the 8 days since I've stopped taking Arimidex I've had terrible tooth pain. I went to my dentist and she said my teeth are healthy but something is causing the nerves to be alive! I also have an earache and sore throat on the same side - no cold. My thumb is still extremely painful but for the first time I feel better just making this decision. I'll probably seek out a homeopathic doctor to help guide me to feeling healthier.I'm hoping as my body cleanses itself from the arimidex I'll start to regain some of my old happy self again.:-)

After 2 years I couldn't stand the pain of Arimidex, within one week I could walk again and no longer have to have infusions to protect my bones. I have to have some quality of life and there was none. It is nice to have a day go by without constant pain and other horrible side effects to remind me of cancer all the time. I have gone on Tomoxifen, but told oncologist if symptoms start, I will quit. I did this after doing much research of recurrence on Arimidex or Tomoxefin. It isn't worth the agony.

Have been reading all the comments with much i interest. I had a mastectomy in 2003 with no other treatment. I had a recurrence in the same breast September 2011, diagnosed with grade 3 breast cancer, had lumpectomy and am now having chemotherapy (4 more treatments to go), oncologist is then going to start me on Arimidex followed by radiotherapy. i have had concerns about taking Arimidex before reading all the posts and they just confirm my concerns. I am coping with the hair loss and have been really positive but do not want to put myself through the possible side effects of Arimidex.I know you would think this being my second bout of breast cancer i would take anything to prevent another but quality of life is also important not only to myself but my family. i will discuss this with my oncologist and weigh up seriously whether i will take Arimidex. thank you for sharing your experiences and good luck to you all you are braver than me.

Linda, I took Arimidex for 5 years, and during that time, had to take an osteoporosis med to counteract the bone loss. The deep bone aches and all over pains were awful, but I kept reminding myself that the alternate pretty much sucked. Heh! Heh! Seems like you end up taking meds to handle the effects of another med.
Anyway, been off it for 2 years, and I'm glad I stuck it out. Almost the minute I quit it, all of the aches and pains lessened, and now, 2 years later, my biggest complaint is arthritis, which I had going in. I exercise, and try to eat healthy, but I had to join Nutrisystems to lose the 18 lbs I had gained. Now, just working on keeping it off.
Basically, I believe it was all worth it.

Unfortunatley, my symptoms have gotton worse since the last time I wrote on here. Im miserable, meaning the weight gain, muscles ache, knees hurt, no energy and to top it all off, Im starting a new career. Im really trying to manage and stay focused, staying positive, but everyday is a challange. I think its been 2 years on this crap and Im about ready to quit taking Arimidex. Oh, and I dont even eat that much!