Had it with arimidex

JO-5

Even the tamoxifen caused me intolerable pain.  Possibly joints had been sensitized due to the Arimidex prior.  I've decided I need quality of life ASAP.  Not interested in living a longer time but in misery.  It is strictly a quality of life issue.

SHARON50

You do not owe anyone an explanation.  Believe yourself.  Listen to the center of yourself.  That is where the best answers are.  Save your energy for your healing. 

Hi ladies...haven't posted in awhile but have the same SE's as most of you.  I'm so desperate, lol, that I just started taking two teaspoons of apple cider vinegar with a tablespoon of honey in a warm cup of water in the mornings and evenings.  A girlfriend told me to try it, told me it has helped her alot.  I'm only three days in soooooooooo I'll let you know...  I know it's cleaning my colon out!!!!  lol   ((((((((((((((((Hugs to all my fellow Arimidex Warriors))))))))))))))))))

you wouldn't be talking about the drug from hell?After bilat mastectomywith no nodes thank you god, I was recommended to have 4 chemos--the one try ,almost killed me. Started arimidex in may. Onset of symptoms slowly started in august and then started a growl in sept, roared in oct&nov, i quit arimidex in nov. It caused documented by pet/&mri bursitis in knees, patella, hips. Pain equal to that pain in all major joints --ankles,knees hips wrists,elbows, shoulders. A different but very bad pain in full spine and pelvic griddle. Another different but very bad in all long bones, hands --except long ,index and little finger.  Feet plantar fascitis(SIC). 2 yeast infections--never had a yeast infection without antibiotic usage. Hotflashes --soaked all the time >>.then would go to deep chill. Clothes off then layers of clothes on. Serious skin infection because off the wetness--5 weeks of dermatology treatment then used a evidence based treatment that I can't tell you about because of the rules. Rule is valid not complaining---but the infection was on my scalp and it was a worse bug than mrsa and my husband was on chemo. The disinfecting everything and extra work to prevent spread was exhausting. Think of how I worried. Nausea and dry heaves. buckets all over the house just in case. Insomnia, DEpression. fatigue ,weakness, foggy brain, muscle pain head to tarsals--toes were fine, if i missed anything--just assume I had it. Did a 8  week washout(means stopped a drug before starting another drug) under onc supervision. Pain scale worst areas >10 to ???. Onc ,ortho --no pain meds didn't believe arimidex was cause . MY dear PCP of many years died in august of a brain tumor. Then on Dec 7th, I met a doc who became  my new PCP. She had me undercontrol in < one week. She walks on water. She was only in town 2 weeks, hired by group to replace my old pcp. Hips&knees never recovered --variable joint to joint. Then started femara -by 4 th week had to quit it, because all the above was beginning to return and I wasn't going to go the distance on it that I did on arimidex. IN washout know . Next try maybe tamoxifen--not sure.  Onc and ortho now believe. new pcp diagnosed fibromyalgia---which turned all docs,counselor and insurance company around. . Basically everyone is now accepting that I can't take drugs. All evaluations of liver show good function. lLver function tests change only after drugs then went back to normal after washout. Ultrasound no fat or irregularities. I'm quessing if you've taken the time to read this far , you would be correcting in thinking aromatase inhibitors are not for everyone. God bless those people having a good experience with it. For me,)*&%#@^&amp;**&&8905.

Suggestion and it's within the Rules. to help with hotflashes----get mens boxer shorts. Sew up the fly. One thickness of 100& cotton.Looks like shorts so you can go outside. Even be around people and they won't know. Also, 100% cotton tees. I wore tees even at night to protect incision lines from scratching and from scratching off  blank drug patches. DOn't remember who told me ,but i bless them alot too....you've had it tough Irishsun ill put you in my prayers. Venting is good. Hurts the soul to keep all the pain and anger inside. 

I think a lot has to do with an individual's tolerance to pain.  I am now at the end of my 5 years on arimidex and plan to beg my onc to let me continue on it indefinitely.  I too went through some side effects but they levelled off after a period of time.  I had joint pain that woke me up at night and I felt stiff a lot of the time.  I do think, however, that I'm one of those people who can tolerate pain better than many (most?) so I just dealt with it.  Or ignored it the best I could, would be another way to describe it.  I decided that it was my new normal and I would have to adjust.

If I suffered to the extent that I was miserable most of the time, I might decide to start looking at percentages.  But as soon as I was diagnosed I decided that my goal was to eradicate the beast and that I was going to go for the most aggressive treatment I could find in order to do so.   That hasn't changed.  I have always looked at my situation as a temporary inconvenience and that has made it easier to go through the phases of treatment.  It certainly has helped me to continue to move ahead in style!

Good wishes to you all. 

Trisha 

Joycey, it is crap. And the nights ARE the worst. I, too, keep questioning the benefits. My Oncotype was 12, so do I really need this? But then, that means I have an 8% chance of recurrence after Tamoxifen and that the Arimidex cuts that in half. I am backed into a corner. I get angry.

sas-schatzi, what a nightmare. I am sorry that you had to go through all that you described. Jeez.

Trisha, I agree with you, we have to eradicate the beast and I am on board with this treatment, but now and then I have to complain a little. There are days when I think I will call the onc and demand to go on Tamoxifen.

My husband thinks that I only got my BC because I took HRT and that now that I've quit it, I have nothing to fear. Hah! He's not suggesting that I quit Arimidex, but his view on that annoys me. BC just isn't that simple.

I have always had a high tolerance for pain. I've had endometrial biopsies without the benefit of painkillers or anesthesia, so I think I'm a tough cookie, but Arimidex has been a real challenge. I broke my left arm in November--same side as my lumpectomy, isn't that great--and I now have such severe pain in my shoulder in the morning that it brings tears to my eyes. I've been to the orthopedist, have gone through physical therapy, but the SHOULDER PAIN is awful. Now I also have it on the opposite side, only milder. Once I'm up and moving around, it improves, but if I reach for something, it's a killer. I don't let the pain stop me, I keep moving. My right knee gives out. It was x-rayed and the doctor said it was perfectly normal. I have lost some of the strength in my hands. My fingers are stiff, but at least they don't hurt badly, but I need help getting the cap off a water bottle! I used to lift a heavy wing chair by myself and carry it across a room, or move heavy planters around in the garden. I've always been strong.  Now I have balance issues--anyone else have those? It's listed in the side effects. It's not dizziness, I just find myself losing my balance, kind of staggering to the right a little bit, occasionally. Happened twice today. If I get down on the floor to do a project and try to get up again, the pain in my knees and is debilitating and I need to pull myself up with pain-wracked arms by grabbing a table or a chair. But on the bright side, so far, after nine months of Arimidex, no weight gain. I am a small, so weight is not contributing to my inability to get to my feet. Pain is.

I'm interested in the Neurontin. Someone mentioned that it helps the pain. I worry about it interfering with the effectiveness of the Arimidex--does anyone know more about Neurontin/Gabapentin? Curcumin is surprisingly helpful during the day, but it's the nights that do me in. No matter what I take for pain, if I get up in the middle of the night, I walk like Quasimodo from The Hunchback of Notre Dame. If I had to quickly get up and evacuate the house for any reason I would probably tumble down the stairs. I'm still in my fifties and a year ago, prior to my diagnosis, I was light on my feet and dashing everywhere. 

I have to fly occasionally for work that I do. I now allow myself a day's recovery time upon arrival so that I can be fresh for my meetings. I find that if I don't do that for myself, I am just not at my best. Best being a relative word.

We are having a bad winter here--lots of snow. Has anyone noticed a seasonal difference in the side effects of Arimidex?

My hair has not changed noticeably. I use Oil of Olay Definity on my face, so my skin hasn't changed at all on my face and neck. I hope Oil of Olay doesn't have estrogen in it. My legs and arms look a little crepey.  My thyroid is enlarged. It was biopsied at the time of my dx due to nodules and was fine, but I am concerned. I'm about to do comprehensive bloodwork. My one year mammogram is scheduled for early April. I just got checked out by my radiation oncologist and she said everything looked great. So maybe I shouldn't complain!

One thing I recommend for any AI woman's sex life is coconut oil. After nine months on Arimidex, my fairly recent discovery of Coconut Oil has made sex feel just like it used to. No kidding!

Sorry to hit you with the entire saga. Oh, and does Arimidex make ADD worse?

My onch told me over a year ago.........the protocal is for 5 years.  By the time I'm done 5 years it could well be for 10.  And by that time it could be for the rest of my life.

OMG, if they extend it any longer than 5 years I am going to scream!!!  It is awful drug!  I mean it's a good drug because it keeps the cancer away but the se's are almost intolerable!  I wonder it ranks up there as one of the worst drugs for se's as far as pain goes? 

I am glad I saw your post, I have had rashes and red patches too, thought it was only dry skin as I live in NV. Been on Armidex fo 12 mos..No other bad side effects, but now I think I know why my skin is so bad, I also look much older now, in a short period of time...Is that related too..

assun--I used to be great at what your asking for -research. I considered it fun like skiing or whatever---then I received a traumatic brain injury then  few months later dx'd with a brain tumor &bc same day ---1 year of chemicals and surgeries. Research abilities not so good any more. Please, no so sorries, ---i'm walking/talking and writing. Just not like I used too.

1.research with non medical background is hard because the words are literally greek and latin based. so, don't think bad about youself if you don't understand their words.

2. you have found the best site on the internet that takes that greek/latin words and translates them to lay person language----my brain wasn't as scrambled prior to all the chemicals and I did oodles of research.-------this site by far explains things better than Any other site. Even better than than the "national cancer society", and the "national breast cancer society". Anyone who has asked how to search I've suggessted many sites could they go to . asked them yo evaluate each site by the following

     a. read and see if they could understand

    b. then come here and go through each section and compare to other sites

Everyone has said this is the easiet to read and understand.

happy trisha --just noticed your note on the pain response .I think you also responded or saw my note  where I said 10>???  the ??was really more like a hundred, but sounded tooo dramatic at the time. I'm used to alot of pain. Feet on the floor and walking 3 hours after a colin resection, out of hospital and walking normally <46 hours after abdominal hyster/bso, full 360 range of motion on both arms after bilat mastectomy @6am next day(surgeon wasn't happy) , and discharged 18(2 1/2 hr delay in preop) hours after admission.

arimidex pain different to the point I felt it was damaging structures. I was right. Knee exam and knee xrays normal, but my ortho dr was experienced enough to know that may not be the whole story.  MRI of knees, about 4 different serious anatomical changes. patellar damage bilat really significant. Pet scan showed same bursitis in left hip. Bursitis in 3 out of 4 joints in previously healthy joints.  Arimidex can cause bursitis and tendonitis if you reread se list. There was someone above who's dr just took and xray. Hope they see this. because xray won't pick up alot of things.  There is literature that annotated people needing total hips and knee replacements after ai's.  I forgot to say I have osteopenia also suggested by dr. related to postpolio. So, with all that I described above in previous notes. My case is unusual. Years from now researchers will know why. BUT since there is no known answers now. I chose not to trade off my muscoskelatal system, vascular(wild hypertension), skin(multple serious skin infections--one being entercoccus faecalis--super bad bug worse than mrsa, kidneys,liver elevation in enzymes. If you look at it on a 180 degree spectrum. I.d place myself pretty close to 180. I'm not looking for sympathy. Just trying to make the point arimidex and femara for me are dangerous drugs--as dangerous as cancer in my case.  I have been off arimidex since nov 29th(?). all joints still affected but varies widely. Knees and hips are still in bad shape, but are showing improvement. 

I read this article by one of the original researchers. I will try to get his comments as close to his as possible. "We did not see these types of muscoskeletal complaints during the clinical trials. We are unsure why. The discontinuation of 1 in 5 women from therapy is unacceptable". The article was fascinating because I have never read a researcher that admitted to what he was saying about the research he was involved in. If you want to try and find the article, I googled using the search terms ---arimidex and muscle bone  joint pain---I seem to remember he was from univ. of mich.  If I can find the article again i'll post the reference.

I talk alot don't I., It's the Irish in me and the pain meds. Happy Trisha hope you took no offense at what I said in the beginning, none was meant too. happy trails.

Nothing was harder for me than the decision to take arimidex or not. My doctors put the fear in me that it was the only way to insure i would not have a recurrance, yet no matter what they said, I felt panic at the thought of taking a drug that had such horrible side effects. Everyday, I would have meltdowns, and beg the nurses or doctors to explain again, why a drug that would make me fat, angry and hurt, was a good thing. They had no explainations, other than try it for a while, because most people do not have side effects. What a damn lie! Well, I lasted 4 days. Everytime I swallowed that pill I would flip out in a rage. It just made me so  mad I was going to have to take a drug. So I started to research it like mad. The more I did, the more I realized there were alternatives. There are NO studies that compare arimidex with lifestyle changes. All the studies compare different drugs, or compare a drug vs no drug.  I found out that changing my diet and exercising would also reduce my chance of recurrance by 50%. That was all I needed to read. I tossed the frigging pills and never looked back. I started eating for nutritional reasons, not for comfort. I took long walks that helped me emotionally. I learned about supplements such as myomin that have the same effect as tamox, with not side effects.

I know how people love to blast me when I say this, because I am not being a good team player, and following all the rules, but I just want to scream when I read about how much you all suffer on this drug, and endure it because you feel it is the only thing that will save your life. Well, there are others routes. If you are stage one, statistically arimidex will only help you 5%, just as MarieKelly said, and there is plenty of proof of that.

Oh, and there is a big side effect of choosing the route I have taken. I lost 40 pounds, went from a size 12 to a size 6. I have more energy now than I have had in years, and I am HAPPY about life. I have NO fear of bc anymore because I know my body is no longer an incubator for disease.

We all need to make decisions based on what is right for us. If that little voice in your head is telling you Arimidex is not right for you, maybe you should listen.

Vivre, I'm on board with you.  I feel that I gave Arimidex a really good try.  I was on it for 10 months.  In addtion to the continued weight gain, in  spite of exercising 5 days a week fighting through the joint pain (that many times made me want to cry).

 In February, after my annual visiit with my PCP and my cholesterol was elevated for the first time, my liver function was abnormal and my blood pressure was not controlled with 2 medications, and I had gained 15 pounds in 10 months, I decided it was time for me to take control of my life.  

 I am meeting with an oncology nutritionist and exercise physiologist through my cancer center, I am doing strength training at the cancer center with the trainer three times a week, meeting with the nutritionist monthly to stay on top of diet issues, no longer eat any processed foods.  The joint pain is totally gone in less than a month!

I feel so empowered and happy about life.  I have already lost 6 pounds in the past month and I am treating my body like a shrine and know that I don't have to constantly be in fear of bc returning.  

I agree that we all need to make decisions on what is right for us. I owe it to myself to listen to my body and make my life beyond breast cancer the best that it can be.

By the way, a dear friend of mine has had a recurrrence of stage 1 bc after 2-1/2 years, taking Arimidex every day and is scheduling her masectomy today.  There are no guarantees with Arimidex or any other drug.  

Be well and happy.

CkingaZ-Way to go! The more you do, the more empowered you will get. It is so liberating to believe in the power of our own body's amazing power to heal, if we just work hard to help give it the right tools. Of course, there are no guarantees in life, but optimism is a powerful placebo. I highly recommend that you all read AntiCancer by Dr. David Servin-Schreiber if you have not done so. It is by a doctor who got brain cancer twice, was told he was doomed, and is still alive, almost 20 years later. He decided to change his lifestyle, and as a physciatrist, he gives some great thoughts on the role that our minds take in our cancers.

Bin, glad to hear there are others who have my back. I get so much flack sometimes for my alternative viewpoint, and I really do not like to argue. I just feel that there is another side to things, and people should be able to make their own choice, either way. I am starting a website that is all about prevention, with lots of links and discussions about holistic health. If anyone is interested, pm me and I will send you the link.

This is sooo helpful.  I have been taking Lupron/Arimidex since Oct 2007 and am ready to QUIT.  I was also taking actenol for bone loss.  I quit the actenol due to severe bone pain.  But now, I'm beginning to think it's the Lupron causing all the pain, or now after reading the posts, the arimidex.  Bottom line, I'm tired of it all and want my hormones back.  I'm soon to be 39, hormone+, HER2+, and no children:( I hope that the lupron hasn't shut me down for good.

HI, I am new to Arimidex.  I would like to know how soon side effects, if you are going to have them, start?  Feeling a bit of mild nausea but I hope that will pass.  If you are going to have joint pain does it start right away?