ARIMIDEX Side Effect Timeline?

mortmain · October 2014

Well, I managed to get the TEVA brand of Anastrozole/Arimidex generic that some folks on these boards seem to prefer, just filled my prescription, will take my first pill tonight.

After exhaustive reading and consultation, the hormonal therapies are what I've dreaded most. The side effects some have described: the joint pain, headaches, gastric problems, hair thinning and general aging properties of having all the estrogen sucked out of you sound way worse to me than anything I've experienced so far, including surgery and radiation (thankfully spared the chemo). I've also read scary data on these side effects, which are called 'common' and 'very common' on one pharma website.

Part of it is I felt so healthy during the discovery of the cancer and the initial treatments that in some ways it seemed like a pretend condition. I kept working through all of it except for some time off for the surgery, and continue to with as little time off as possible, don't like talking about it at work. When I take the odd afternoon off (fatigue from rads still springs on me even though I've been done for over a week), I feel a bit like I'm playing hooky.

I guess I'm worried that for the 5-10 years I'm supposed to be on this medication, I will finally feel and look as sick and impaired as the diagnosis of cancer implies.

For some reason, I think I'll feel better if I know what to expect when. I know this isn't rational, that everyone reacts differently to treatment, and that I may not have any side effects at all. And I also know, rationally, that I am very lucky I have a medication to turn to at all. I feel like a big baby.

So, anyone? When did you first feel which side effects? How did you treat them, how long did they last, did they settle down? I'll be grateful for any and all responses.

Amy

ruthbru · October 2014

I was a little achy & flashy at first. I bought some fans, ditched the heavy sweaters, and just kept moving. After about 6 months everything settled down and I felt fine for the other 4 1/2 years. Looked good, felt good, was good; and best yet, still around to type this encouragement to you!

tonyacozart · October 2014

I am 3 years in on arimidex and have done really well with minimal/tolerable side effects. My worst was joint pain, but it was also initially just from estrogen withdrawl all together, my PCP put me on wellbutrin and that went away. I have lots of muscle pain and aches, mostly does not bother me during the day, and mainly in my legs. Magnesium helps, but I have been to the ER a few times when I have gotten a virus because the pain in my legs becomes unbearable. I am currently on a holiday from it to see if my muscle pain will get better and considering a switch to tamoxifen. RIght now, I am having spasms in my back and lots of charlie horses, in my legs and feet. I am not able to work out like I want because I don't want to add soreness and muscle injury to it. All in all I have done well and can tolerate it for another 2 years I suppose, but and considering my options just going off of it. I have no ovaries...so my estrogen supply has to be minimal...

Trudi7 · October 2014

Mortmain, I hope that your treatments are going well. I was on Arimidex for only a few months. The joint pain, stiffness and insomnia were a lot to deal with. I slept with a pillow under my knees every night to lessen the pain. I was so stiff every day I felt like I was 80 and I'm only 54. My doc switched me to Exemestane and I have been on it now for almost a year. The joint pain is dramatically reduced but now I am dealing with wait gain, osteopenia and vaginal dryness. I did up my physical activity and that has helped me deal with stress and of course helps to ward of the bone loss. The key is to let your doctor know how you are feeling to help you minimize your s/e. Good luck.

Spookiesmom · October 2014

Not everyone has se's. And if they do, it's usually hot flashes and joint pain. If anything becomes unbearable, talk with your doc. There are options.

Best wishes for an easy ride!

mortmain · October 2014

Thank you all who responded.

At this point, I've been on Arimidex for two weeks. I've been blasted like a zombie with brain fog, headache, and exhaustion this whole time. However, since this fatigue just feels like a more extreme version of what I experienced during radiation and because I'm just a few weeks out from my last blast, I think it is caused by radiation and not medication, although how can you tell?

I've been a little flashy and stiff so far but nothing I can't handle. I'm also trying for a healthier diet and am walking @ 30 minutes a day (to and from the subway. All those stairs!) I don't suppose prosciutto can be any part of my new nutrition plan?

Ruthbru, it's so good to hear from a 'graduate', and one with such a tolerable report.

tonyacozart, can you tell me how you are using the magnesium, when you take it and how much? The muscle aches you are experiencing, these are different from joint pain? I can see how joint pain could be tied to estrogen starvation, is the same true for muscles, or do you think this is something the medication is doing directly? I hope you feel better soon.

Trudy7, how soon after starting did you experience the side effects you describe. It is good to know you have treatment options, although your alternative sounds like its giving you its own issues.

And spookiesmom, your advice is sound and sensible. I appreciate the input!

Cyber hugs to all!!

Amy

mortmain · December 2014

Personal update. Have now been on Arimidex/Anastrozole two months.

Have seen some of my energy return. I credit the time since stopping radiation. All fatigue not gone, however, but can't be sure evening exhaustion is because of busy time at work or because of lingering radiation fatigue or because of medication.

Skin seems especially dry, have a scaly patch on one eyebrow. Medication-caused estrogen starvation or normal aging? Same with moderate joint pain and stiffness, could be caused by either.

Two side effects I definitely lay at Anastrozole's door: daily headaches and an odd metallic taste and feeling toward the back of my mouth/opening of throat.

Continuing with better diet (not perfect) and consciously trying to walk more.

So far, nothing I can't live with. After all my worrying, I'm tentatively relaxing.

Any updates from other folks who've recently started the hormone suppressants?

Chloesmom · December 2014

3 weeks. Started it preop as tumor was hurting and BC wanted to see if meds would help before BMX

No side effects yet. Had a baseline DEXA scan done and density is less in hips than spine. Waiting to see onc to discuss bone strengthening meds.

mortmain · December 2014

Chloesmom, is the aim of taking Arimidex preop to shrink the tumor? What do your docs hope for? Will you continue the meds throughout? Does the mastectomy mean you will be able to skip radiation?

Hope your recovery from surgery goes smoothly!

Countryroads · December 2014

Well here I go. I just took my first dose of Armidex. I'm stage IV breast and liver Dr is hoping to stop growth and shrink for removal and to remove the small spot on my liver. The horrid list of side effects has me freaking out. I'll let you know what I experience. I'm told the Cancer is non invasive and dr is confident in this treatment. I just pray I can handle this

muska · December 2014

On generic anastrozole since March 2014. Most of the stiffness experienced in the first couple of months is now gone. The skin has become much dryer but this started even before anastrozole - when chemo put me in menopause. I try exercising more and found exercise helps best with stiffness. No major complaints attributable to anastrozole so far.

SunnyC · December 2014

Almost 3 months after starting and have the following SE's:

Fatigue, severe at times. Most times really.

Compounded by sleeplessness

Joint / muscle pain especially in left foot, site of 10 year old injury

"Chicken skin" on back of upper arms

Gastric issues off and on

Hoping I grow a better tolerance soon.

Claire_in_Seattle · December 2014

Coming up on the end of my five years, I can say that side effects have been minimal. I started the same time as rads. I agree on the metallic taste, although subdues over time. Some minor trigger finger in left thumb. Achiness, but that could also be from the exercise I do. No weight gain, but because I make sure I get exercise.

Overall, my body is fit and firm. Sex drive is just fine (won't repeat how my new guy describes things, but I will say he is fine too). Some skin dryness, but that could be because I am getting older. I sleep just fine.

Need to get out and do my walk. Loving that it's Christmas Eve. Wrapping presents for friends I thought would be out of town. A couple more to go. Dinner there tomorrow. I am bringing a Christmas Pudding and hard sauce.

I am beyond thrilled to be here and thankful for every single day. - Claire

mortmain · December 2014

Claire, even at the other end of five years, and still apprehensive, so glad to hear your report. I'm with you: so much to celebrate. I read the tips of others regarding treating joint pain with exercise and gin-soaked raisins, and will try it all.

My wishes to all that we get through treatment safely and with minimal aggravations and are able to get on with our lives!

mortmain · December 2014

Claire, even at the other end of five years, and still apprehensive, so glad to hear your report. I'm with you: so much to celebrate. My wishes to all that we get through treatment safely and with minimal aggravations and are able to get on with our lives!

Msqueen57 · December 2014

Been on Arimidex/Anastrozole since the middle of September. The worst side effect for me is by far the mood swings. As the estrogen was leaving my body I have experienced the menopause from hell as far as mood swings. My natural menopause was very easy. Saw my Oncologist last Friday and explained the situation. He put me on a trial of Effexor. So far it really seems to help. Oncologist also said that as my body adjust to the lack of estrogen, the side effects should lessen. For anyone else who experiences similar problems (either flying into a rage or crying jags) ask your doctor if this might work for you.

Still have the side effects of joint pain, fatigue, and problems sleeping, but I can deal with these while waiting for my body to adjust. Know this medication is my best shot to prevent a recurrence, so I can deal with the other side effects, at least for now.

My best to all for a healthy New year.

Member_of_the_Club · December 2014

I've been on arimidex for almost 5 years and my only read SE has been bone loss. No joint pain at all, probably because I'm a runner. They say exercise helps with the bone pain.

Gerric · December 2014

I wanted to reply to all having a problem with Arimidex or anastrozole. I took Anastrozole and then because the cost was not much more switched to Arimidex 11 months after I started. My stage of cancer involved two lumpectomys and radiation and was stage T1c (stage 1-2, 9.5% chance of return with Anastrozole treatment, 13.5% w/o anastrozole). I realized I was having joint pain in my hips which my radiologist x-rayed so I wouldn't worry about it being cancer spread. The main side effects I've had are the joint aches and I have easily controlled them with glucocimine and Aleve. Also the hot flashes are manageable by not getting too hot. My skin seems dryer but it still looks good with makeup. I try to stay fit and eat better and not drink alcohol much which has been the hardest struggle because my friends and I like to meet for happy hours. It will be two years since surgery on June 5th. (I have not experienced vaginal dryness either.) I am 63 and was still taking HRT at the time found the lump which was estrogen and progesterone positive but negative everything else. (I had found a second tiny DCIS lump on the other Breast which was removed five monts after the first one and I had five more weeks of radiation on that side.) I was treated entirely at the Stephanie Spielman Comprehensive Breast Center at OSU in Columbus Ohio. The power of prayer and good check ups are making things look good. Don't worry about the side effects, treat them and go with it. That extra 4% survival possibility is worth it. Prayers to all

ktab96 · January 2015

I was on Femara for 3.5 years. I did not experience any side effects for the first three months. Then I began to feel achy and sweaty on and off. It seem to come in waves. For example some months I felt fine and then other months my joints would bother me or I would have hot flashes. As time went on I found myself to more and more achy. The last six month became unbearable that it became a quality of life issue so my Onc pulled me off it and now I am taking a prescribed 3 month break. My Onc said it will probably take 30-60 day for it to clear my system. Anyway after "my break" my Onc will prescribe something else. I have to be on some sort of hormone therapy for 10 years.

Nyr4evr · June 2018

I am on anastrazole for three weeks and have had no side effects I try to walk 1/2 hour every day. I take vitamin D 5,000 mgs My sleep could be better but I get 5-6 every night. No sweats and no joint pain. I think walking is helping.

ktab96 · September 2018

Keep walking Nyr4evr . It will help. I was on Femara for three years before I experienced joint pain. I attribute it to being active. Eventually however the side effects came on with a vengence. The joints in my fingers and toes became red and inflamed and appeared to be popping out. My knees and elbows just hurt. I was then put on to Anastrozole for two years. It helped somewhat and toughed it out for two years. I am now on Tamoxifen. I only experience the occasional night time hot flash with this drug. Its a walk in the park compared to the other two medications.

ARIMIDEX Side Effect Timeline?

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