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Arimidex side effects

Karenkrad
Posts: 8
Joined: Jul 2010

Hi All,
I am facing extreme fatigue and chronic pain. Which is effecting my quality of life. I feel as if I am in no mans land. My GP wants to put me on anti depressants, but I am not depressed, just very low because of the side effects of the arimidex. It is so bad I am forced to take time off work, which I feel will cost me my job?
There is a lack of understanding I feel with the medical teams after main treatment has ended. Women are put on drugs like arimidex and are forced to carry on without any proper meaningful support. This is a very grey area and an issue that needs to be raised to give people more support to aide a better quality of life?

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Karen, I am so sorry to read this. Have you contacted your onc and discussed your current state? I would think that if the side effects are unbearable that consideration would be given to change the pill. This therapy is very important to our well being but not to the point that it effects our lifestyle of being unable to work, etc. Please discuss with your onc and I hope you can get some relief. I'm sending strength your way to get through this and on to a more normal living!! Good luck!

pattimc
Posts: 432
Joined: Dec 2009

I, too, am suffering from the side effects of Arimidex. I have made an appointment to see my onco tomorrow. I've been on it for 6 weeks and have experienced major headaches, aches and pains, fatigue, etc. She told me that when I went on it that if the side effects were unmanageable we could try other drugs or put me back on Tamoxifen which I handled fairly well. Please call your onco and make an appointment. I'm sure they would want to know that you are not doing well.

Best,

Patti

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

I can totally identify with you. I was on femera for seven months and it was worse than chemo and rads. I stopped taking it for two months on my own (not necessarily something I'd recommend for anyone else). I needed to know for sure if what I was feeling was caused by this drug and if I'd feel better being off it. I felt much better and when I went for my next visit with my onc I handed her a list of side effects and made notations about which were worse and how bad each was. She looked over the paper and changed my meds immediately. All she asked was if she could keep the paper I'd given her.

I think the oncs are afraid to tell us about the side effects because they're afraid we may "get" them if we know about them.

If you go in and calmly explain (or write down) everything going on with you, hopefully you'll get the attention to this that you need.

You're right about quality of life. My family doctor asked me if I'd rather have cancer than hot flashes when I told him what I'd done and I tried to explain that if it were only hot flashes I'd have no problem with that. It was everything else that made me feel like I was 106 years old and about to fall over.

Try talking with your doc again, or one of the nurses on your team. Ofter they're more sympathetic and understanding.

Good luck.

marge

Mama G
Posts: 764
Joined: Nov 2009

you really need to go off of it to see if that's what's causing the side effects. I was blaming my numbness on the arimidex and it turned out to be a tumor in my brain. After being off the arimidex for 4 weeks I really can't blame it for any of the side effects I thought were because of the drug. Ask your doctor if it's ok to go off of it for a while and see if you feel better. Good luck.

Karenkrad
Posts: 8
Joined: Jul 2010

Hi Mama G,
Thanks for the reply!
Nice guitar by the way
Well due to a viral infection the last ten days I have not taken the arimidex, and must admit I feel slightly better, pain in joints seem to have improved a little and brain does not seem so clouded. I feel the arimidex makes me feel very low I am not normally so negative. I have lost my get up and go?
Sorry to hear about the brain tumour. How are you feeling, are you still having treatment?
Best wishes,
Karen

Karenkrad
Posts: 8
Joined: Jul 2010

Hi Marge,
Thanks for the reply!
Yes during my next vist I am certainly going to talk about the issues that I am faced with at the moment.
I just think more collabaration is needed between the drug companies and the health care providers to produce worthwhile studies of the long term use and benefits of these drugs. Just think it is a little hit and mis at the moment? The cancer medications are often given to attack the cancer in the best possible way and not much research this I think is the main problem, it takes many years to gather proper relevent information. Drugs like arimidex are fairly new to the breast cancer arena and there is still not enough valid research out there with regard to the long term benefits and survival?
best wishes,
Karen

KayNYC's picture
KayNYC
Posts: 495
Joined: Mar 2010

I have also been plagued by the side effects and I am involved in an investigation of quality of life on Arimidex at my cancer treatment center. The study is being funded by the Komen foundation. The docs appear very aware of the problem of keeping women on these drugs that cause such negative impact on the quality of life. I have been started on high doses of Glucosamine and Chondritin (this can raise the glucose levels), another clinical trial to address the ankle pain and joint stiffness. Now I have been diagnosed with high cholesterol. I am working with my internist on this new problem since I do not want to take the Statins due to side effects that appear so much like those that are associated with the Arimidex (several people in my family have tried statins with adverse reactions). I have been told the only way to know if the cholesterol is directly related to the ARimidex is to stop it for a while. I have decided not to do this since I believe the benefits outweight the risks, at least in my case.Seems we have to weigh the risks and benefits of everything we do...
Hugs,K

Karenkrad
Posts: 8
Joined: Jul 2010

Hi Kay,
Sorry to hear you are also suffering with side effects. I sincerley hope the project you are involved in turns out to be a worthwhile meaningful study? It would be great to have the tools to prepare a good foundation for the medical care teams, I believe there is too little research being carried out at the moment, and alot of the preventative drugs like Arimidex are given without proper knowledge of the long term side effects. Because these are relatiely new drugs it takes many years to gather enough solid data to come to some positive conclutions?
I must admit I have not had my cholestrol tested since the start of Arimidex. I have had regular dextra bone scans.
Yes I am worried about the risks if I come off the drug.
Let me know how your study goes, I would be very intereted to know the outcome?
Best wishes,
Karen

jphilpo
Posts: 175
Joined: Mar 2010

I can so relate to you. I was so depressed after being put on femara. I never have suffered from depression before. I had terrible bone and joint pain and could barely walk. I called my dr. sobbing and he immediately took me off the drug for 3 weeks. When I saw him again, we talked about it and I am now on tamoxifen. It is better, but not great. I agree with your comment about "if we know about it, we might "get" it." After treatment, most women are told NOTHING about what might happen. I just thought I would take a little pill and be fine. It changed my life, even more than chemo,surgery and rads. My patient co ordinator at the hospital also told me that they are now taking more seriously the side effects that women are suffering. I told her being ignored or being made to feel "less than" a trooper is so demeaning. She totally agreed. More support after treatment would be great.
Thanks for the post,
Jean

Karenkrad
Posts: 8
Joined: Jul 2010

Hi Jphilpo,
Yes same here I thought after my main cancer treatment things would be fine, just popping a pill seemed easy?
I have also had my ovaries taken away in the last nine months, so no hormones to help me through my every day life?
I strongly feel you are left to cope on your own once the main cancer treatment has ended.
The health care teams are now becoming more aware that more people are surviving cancer and living longer. It has been noted there is a gap for the care of the long term cancer survivor, hopefully with enough voices and dedicated research things will start to improve?
Thanks for the reply let me know how you are getting on?
Best wishes,
Karen

natly15's picture
natly15
Posts: 1934
Joined: Sep 2009

I had to go off arimidex because it was putting me into a terrible depression and I was already taking an antidepressant. I'm on femara now, and testing the waters. So far I'm ok. we'll see what happens. I do believe in a quality of life and I knew arimidex would not give that to me and I went off it before even advising my onc. we all are so different and have to make the choices which are best for each of us.

Karenkrad
Posts: 8
Joined: Jul 2010

Hi Natly,
Thanks for the reply!
Let me know how you cope with the Femara I just might consider changing? I will mention this to my Oncologist during my next visit?
Hope things start to improve for you.
Best wishes,
Karen

lizzie17
Posts: 529
Joined: Nov 2009

I have been taking arimidex for 2 years now and most side effects have subsided. The only one that has lingered is constant fatigue. And wow, that really does interfere with the quality of life. I have discussed this with both my surgeon and my oncologist, and they both say----If you are tired, sleep, your body is telling you it needs rest to heal and stay healthy. I already take an antidepressant that my oncol gave me a year ago. I feel like arimidex is worth the fatigue, and I still have bone and joint pain on occasion, because IF it will keep me healthy long-term.....I have to keep taking it.

Kiantae
Posts: 29
Joined: Feb 2010

I started out on Femara but found the joint pain intolerable. I was switched to Arimidex and the joint pain has subsided but now my heels hurt so much it is difficult to walk. I have my 1 year checkup in a couple of weeks and I am hoping the next med will be better. I guess if it is not, I will have to choose which set of side effects I can deal with. I have had fatique from both. I think with the surgeries and treatments we know there is an end and mentally get ourselves in a place where we can cope. We can count and say we are 1/2 way done or 3/4 of the way done. There are milestones that we work on reaching. With the follow on meds, there is no tangible end in sight you just have to deal with it for 5 years. This is by far the hardest part for me.

gagee
Posts: 322
Joined: Sep 2010

Well I am having a lot of side effects. Had to go to urgent care tonight. My hands and feet are so swollen... can't believe it. I feel like chit all the time, fatigue,swelling,depressed and now they are checking to see if I may have Lupus. What next. . . thought I would have surgery,rads and the arimidex and be back to normal. No normal for me yet. I even had e-coli in my breast wound from a dirty radiation room (or so my doc thinks). Suppose to be over that but still feel yucky and tired. Don't know from what I feel worst. See doctor in the morning to see about the Lupus. Pray it is only the Arimidex side effects.

Sorry you are having problems and didn't mean to lay any more on you by talking about mine. So thankful I can vent here.

Wishing you well and lots of Prayers coming your way.

Happy Holidays,
Diana

New Flower
Posts: 4065
Joined: Aug 2009

I have the same opinion about anti-estrogen therapy and support from medical community. I changed my oncologist 8 months ago because I felt lack of compassion, while I was on Tamoxifen.Recently I have been taken off Arimedex for 1 month due to severe side effects of this drug by my oncologist.
Yes, make a list and discuss openly your problems. Please reach out, you should not suffer.

I think because we are not complaining and do not ask about quality of life oncologists do not take it seriously. I also believe that pharmaceutical companies underestimate and downplay side effects anti-estrogen medications.
New Flower

warrrior3
Posts: 91
Joined: Oct 2010

and now petrified! I met with my Onc for the first time yesterday. The only side effects he and his nurse discussed were MINOR stiffness in the fingers that would feel better as the morning went by and maybe hot flashes!! Since I have not experienced hot flashes the last two years since my period ended I assumed I would not have them on meds. I WAS given a sheet with a list of possible side effects but thought it was just from the PDR like all meds have. After reading everyones horror stories regarding Arimidex I have a much better idea what to expect. Thank goodness we have each other to hear the truth.

KayNYC's picture
KayNYC
Posts: 495
Joined: Mar 2010

The list of side effects go on and on however, thankfully, we don't usually get all of them. I do agree however that the side effects are minimized by the Oncologists when they talk to us about taking them for five or more years.
I am hoping that the Komen study I am involved in, on quality of life while on the hormone receptor blockers will be helpful not only to Pink warriors who come after us but to our medical providers.Support during survivorship needs more attention by the medical community as our numbers grow.
Hugs,K

New Flower
Posts: 4065
Joined: Aug 2009

Kay ,
can you provide a link to ready about study you are in?
Thanks

KayNYC's picture
KayNYC
Posts: 495
Joined: Mar 2010

I leave on vacation for a few days this evening but when I return, I will look for the information about the study I am involved in and send the info or a link to it. I'd be glad to share the information with all those who are interested.
Have a great weekend ladies. I am looking forward to holiday festivities and down time in Williamsburg, Virginia with my husband.
Hugs, K
I am smiling from ear to ear!

Kiantae
Posts: 29
Joined: Feb 2010

My good friend that started her breast cancer journey a year before I did has been on Femara and has had no side effects at all. I think the percentages of people that don't have terrible side effects are more than those that do, so the odds are in your favor.

Apat
Posts: 13
Joined: Mar 2010

The Femara Samples that my onc gave me last week are still on my dresser. I am SO AFRAID to try it. I'm very sensitive to meds anyway and fortunately don't have to take any...yet. Sounds like taking the Femara could change all that. I had an ER+ lumpectomy in February, and waited until 3 weeks ago for sentinel node removal & testing...NEGATIVE!! I was given a print out showing that my odds of the cancer returning with no further treatment is 17%, but with Femara or Arimidex, it is 8%...not sure it's worth it. Surgeon and Onc says they will be watching my breasts closely and can simply remove any returning cancer, but if a microscopic cell got loose and it shows up in my bone or an organ, it could be untreatable. My decision is whether to play the odds or just believe that it is gone, and that God is fully able to do better than 17%. My quality of life is so important. I already fight anxiety & depression due to the fact that I'm a widow and walk through all this alone. I can relate to the earlier comments about how this disease has put me in credit card debt for copays, deductibles, and non covered expenses. I don't need anything else to make things worse...in fact, I believe this lowered state of well being for such an extended time could actually lower my odds to beat this! I was elated with the good news of negative nodes and that this is TOTALLY my decision based on the best odds that a COMPUTER can give me...I'm thinking I will listen for what God has to say about my odds and my decision. How long were all of you on these meds before the side effects started, and how long after you stopped did they subside?

THANKS AND BLESSINGS,
Angie

aisling8's picture
aisling8
Posts: 1284
Joined: Feb 2010

to hear about the side effects. I've been on Arimidex for 6 months and yes, I notice things -- mostly my feet are sore, sometimes I feel incredibly cranky, and I have new aches and pains BUT most of it is minor particularly when I'm walking every day which feels counter intuitive when your feet are sore:)

I know we're all different. I'm hoping people just starting out will feel less afraid to at least give it a try.

Best of luck,

Victoria

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I'm not on Arimidex and I am so sorry that you are feeling this way physically and mentally. I hope that relief comes soon for you. If not, can you stop it and be put on another hormone therapy drug?

Hugs, Megan

Norma53
Posts: 11
Joined: Jul 2010

I am 54, stage 2, breast cancer and had two lymph node and the 1cmm tumor removed in Feb. 2010. I had 4 session of chemo and radiation. I became allegric to the Docetaxel and had to stop the chemo plus, I already had some nerve damage to my ulnar nerve due to pc use. I never had neuropathy on my feet. About a month ago, I was put on Arimidex and lasted about 2 weeks on it before going off of it. After being on the Arimidex for 8 day became depressed and listles. I called my Dr. and he immediately took me off it. A day or so after getting off the Arminidex, the depression lifted and I actually felt happy. Fourteen days after stopping the Arimidex, I began taking Aromasin, 8 days later my neuropathy increased on my feet, legs and hands. Prior to taking these meds, I had developed occasional, mild neuropathy on my hands, feet and legs that came and went. I think I developed neuropathy from the chemo. Today I decided to stop taking the Aromasin to see if the neuropathy goes away or decrease. The Aromasin has not made me feel depressed and actually feel pretty happy most of the time. I fear that if I continue to take the Aromasin my neuropathy will increase. I have also developed mild lymphedema on my breast (am in physical therapy to work on my breast).

I think I have also made my neuropathy worst by walking on the treadmill. I also exercise with light weights and indoor biking. I use to be a gym rat, now I am more of a gym mouse.

Anyone out there experience increase nueropathy with any of these hormone blockers?

Double Whammy's picture
Double Whammy
Posts: 2320
Joined: Jun 2010

Good grief! This is not encouraging at all. I'll get an rx next week. I had already decided to delay taking it until after the holidays. It just feels so good to feel good again. I guess I'll never know if I'll have se or not until I actually take it. SOME women must do well on it!

Suzanne

filimu's picture
filimu
Posts: 74
Joined: Aug 2010

Femara and Boniva...

I quit the Boniva after about 4 months...my jaw got sore on one side when I tried to open my mouth wide enough to bite a good sized hamburger. I knew jaw pain was a known side effect of that drug, so I stopped taking it, and within two months the jaw pain was gone. I told my Onc doc I had stopped it when I next visited him, and we just agreed to have me keep taking calcium and vitamin D for the time being.

As for Femara, it's dried me up like a grape dries into a raisin. The initial hot flashes were unbearable, like pulling the plug and leaving me empty and drained - I couldn't even stand when one hit. I never actually sweat, but I couldn't even breathe! Now I just get occasional periods of feeling exceptionally warm, and realize I'm having a "flash", but I just relax and know it will pass in a minute or two and it does. The dryness is the worst, and the fatigue. My sex life is history, cause I can't take the pain, no lubricant comes close to being adequate. Thank God my SO thinks its better that I'm alive no matter what. And the doctor says....another 4 years I have to take this friggin stuff....Have I mentioned that I hate this disease?

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I am not on Arimidex, but, just praying that you all do well on it.

Hugs, Megan

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

I have been on Arimidex for 16 months. I had severe depression for the first few months but that went away. Since then I have been in extreme pain- back, shoulder, hands, thumb, now my heel. I have seen all kinds of doctors. I have tried Aromasin (more pain). My rheumatologist took me off Fosamax (which I am taking for osteoporosis caused by chemo) to see if that was causing the pain, nope. The physiatrist (pain doc) suggested steroid injections into my spine, no thanks. I've tried all typed of pain meds with no success. So in January, all doctors agree that I should switch to Tamoxifen if the pain continues. My onco says that doesn't cause as much pain, I hope that's true because I cannot imagine living another 3 1/2 years with this level of pain. But as you all know, we'd do just about anything to not go through chemo again or have mets.

Mama G
Posts: 764
Joined: Nov 2009

I'm having some problems with leg/muscle/bone pain I assume from the arimidex. Does Boniva help? I have only been on it for 5 mos, but so far this is the first side effect. It interferes with my sleep, so I'm taking sleeping pills 3 times a night.

scout5000's picture
scout5000
Posts: 94
Joined: Apr 2009

I started having pain when I first took Arimidex. Then I started on Fosamax and the pain got much worse. So now I'm off the Fosamax and the pain is still just as bad. So it must be the Arimidex. I have tried other osteoporosis meds also. My rheumatologist said that if I switch to Tamoxifen, I won't need osteo meds because Tamox doesn't damage your bones. In January I'm going to switch. So I would guess that if anything, the Boniva could be making your pain worse. I hope you find relief from the pain.

natly15's picture
natly15
Posts: 1934
Joined: Sep 2009

Femara has been much kinder to me thus far. I pray it continues to be an easy transitiion from that arimidex.

amazing how our bodies are so different and react differently to the meds.

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

It is amazing how different we all are. I thought I was just super sensitive to meds, (have been all my life) but it sounds like a lot of us have had trouble with these meds.
I don't want to scare anyone but for me the aromatase inhibitors just were too much to take.
I tried all three. Femara was fine for a few months until major depression kicked in. I literally cried all day and many days couldn't leave the house.
All syptoms stopped in 2 weeks after ending. Next, Arimidex...forget it, bone, feet and hand pain ( but no depression).
Lastly, Aromisin..almost the same as Arimidex for me.

I have done a lot of soul searching on this one. I do need to take something because of the damn 8 positive nodes( my onc's quote)
I have a script now for Tamoxifen and will try after the holidays. It does feel sooo good to feel good but we'll see.

He told me that Tamoxifen doesn't seem to have the extreme side effects of the AI's but has other risks.
God bless us all.
To repeat what one of you said, chemo and rads and surgery were very do able because I could see the light at the end of the tunnel.
I don't care how you slice it, 5 years is a very long time.

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