Do serious Anastrozole side effects later resolve?

Sahmeranah

Hi all -- I started taking Arimidex in January. After a few weeks I started feeling a certain creakiness in my joints, muscular strain/pain (like I'd done a hard 10K run) upon waking. Then the pain and discomfort ramped up to the point that I could not use my right arm because of severe shoulder pain. An MRI revealed tendonitis and bursitis in the afflicted shoulder. The PT I started seeing deduced that at least some of the pain I was experiencing had origins in my cervical spine and started treating my neck using MacKenzie exercises. Then on Wednesday of this week I woke up in so much pain and so dizzy that I could not get out of bed. When I finally got up I could not walk because of the vertigo, and literally crawled to the bathroom to vomit. Though incapacitated, I managed to make an appointment with a new PT who has expertise in neurology and she started treating me for cervicogenic vertigo. It appears that the Arimidex has caused some sort of inflammation that is affecting my neck vertebrae. Awesome. Also have intermittent wrist pain (same side as bum shoulder). None of these problems (vertebrae problems, bursitis and tendonitis in the shoulder, wrist pain, cervicogenic vertigo) predate Arimidex.

Wondering if anyone has experienced this degree of woe -- who has been able to continue with an AI successfully. I feel so demoralized. The long term benefits of this class of drugs is terrific so I want to continue but my quality of life matters, too, and this shit is not tenable.

Glad to hear about other shitty experiences but I'm hoping to hear from someone who made it through to the other side. Stories, please! Thanks friends.

Meow13

Yes. I could not get out of bed one day after months of worsening pain my mo tooke me off anastrozole and put me on exemestane. Exemestane had other bad effects. I am off everything but still feel lingering pain.

Sahmeranah

Hi Meow13 -- thank you for sharing your experience. I am so sorry you are still experiencing pain. How long since you stopped the Exemestane? Regardless, I'm hoping it will eventually abate. Hugs to you.

Meow13

I have been off over 2 years now and I still feel pain. It is worse at night. Occasionally I take pain relievers like extra strength tylenol it helps alittle. My boneloss is normal for a woman my age. I never had any pain problems before this bc happened.

Spookiesmom

I was on it a little over 4 years. I didn’t have what you are dealing with, but my foot gave me such pain I was using a walker full time, and thought I was heading for a wheelchair. Podiatrist was clueless and useless. Stopped the pill. Just a few days later was walking normally.

MO started me on tamoxifen. In a few months the other Foot started hurting.

I’m off everything now. I do have arthritis in most joints, that doesn’t hurt or bother nearly as much.

Suggest a call to your MO. There are other AIs you could try.

Meow13

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I should say my pain is more nagging than anything else. I still swim and do the treadmill. I also do moderately heavy yard work.

Sahmeranah

Meow13, I am so sorry that you are still in pain, but glad to hear that it's nagging rather than acute, and that you are able to be physically active.

Sahmeranah

Spookiesmom, thank you for sharing your experience. A walker? A full time walker?! From taking an AI? Yikes! That sounds awful. I am so sorry you went through that but glad to hear that you are off everything and doing reasonably well. When I hear stories like yours and Meow13's I think it's little wonder that 40% of women who start AIs stop them because of the SEs. We all want to avoid recurrence - but FFS, quality of life matters too! (Also, thanks, yes I did contact my MO and he has pulled the AI for 2 weeks. He wants to see if the symptoms clear and figure out what to do next after that. I can say I am VERY disinclined to resume the same AI, but I'm willing to try a different one.)

Spookiesmom

It was so strange. My foot started to hurt, I thought I’d done something dumb. Then I started using a cane. Finally went to pcp, he poked on it and said arthritis. I didn’t think so. He ordered a walker.

Went to my podiatrist of many years. Shot X-rays. Nothing broken no visable arthritis, but he really didn’t know what was going on. I ordered a nicer walker from Amazon with a seatand was ready to get a shower chair. Couldn’t stand to shave legs. Had to take walker everywhere.

Amazing what that pill can do to us.

edwards750

I started with Arimidex but when I was DX with borderline osteoporosis my MO switched me to Tamoxifen. I am 6 1/2 years out.

I had no issues with Arimidex and only joint pain with Tamoxifen. While it was annoying it was at least manageable.

I totally agree. QOL is paramount. I also agree the extra insurance with the drugs is important too but sometimes it’s just not possible if you want to live a normal life. I know women who have had debilitating side effects and had to discontinue using the drugs.

We have to do what’s best for ourselves.

Diane

dtad

Hi everyone..IMO we need to speak up for better treatment options. I'm not sure how a 40 percent completion rate is deemed an effective treatment!

Ceeceeboo

Hi! Here is your positive reply. I had a lumpectomy in April 2013. Had second surgery for margins and nodes, as they did not originally suspect BC. IDC with mucinous features, multifocal (7 mm and 5 mm @ 12 o’clock position on RB) stage 1b. Did 21 day rads and started on anastrozle immediately. I had almost all the SE, but I put up with them, as I wanted to reduce my chance of recurrence. My family helped lift me up when I got fed up...20 lbs weight gain in 2 months, joint pain and dryness were the worst for me. I took SuperB Complex to stop neuropathy and Calcium gummies daily. My bones did not suffer. Well, five years later, good mammos, and less dense breasts, my onc said I was done. I am now 3 weeks out from last dose. Lost 4 lbs, dryness gone, muscle ache gone, joint pain less, insomnia reduced...so much more like I used to be. I realize I am now 66 and not the 61 I was at dx, but I feel so much better. My onc said I would notice difference after about 2 wks...she was right.

So, hang in there. Five years will fly by if you look at the life you have ahead. Most people have SE with all the different types. I didn’t change because I felt like dealing with what I already knew. I wish you the best. You can do this!

Meow13

I think my anastrozole side effects have improved but not gone yet after 2 years.

jenndenino578

I had those types of neurological symptoms beginning at age 50 before I ever had any breast problems whatsoever. They thought I had MS at first due to the vertigo symptoms. (the vertigo eventually mostly resolved). They eventually did brain MRI, cervical spinal MRI's and Lumbar spine MRI's, they never found any MS lesions. I have been suffering with this condition of my spine (spinal stenosis, arthritis, bone spurs, herniated and bulging discs) for almost 8 years. These symptoms actually started right around the time I was going through menopause. I assume the hormonal changes triggered it since there was never really any explanation, it came on suddenly. I never took any hormone replacement therapy while going through menopause either. I never even took a birth control pill during my childbearing years. We always used non hormonal birth control.

Before that I was in good health, no high blood pressure, no diabetes, normal BMI, normal cholesterol, normal blood test results. I got moderate exercise, I was never a marathon runner or anything. Never had any back problems that I was remotely aware of. I now have weakness in my feet which comes and goes and I will never be able to walk miles without effort like I used to be able to do. I am thinking of applying for a handicapped placard since walking can be really difficult. I used to park way in the back of the store parking lot before this happened in order to get in some extra walking, now forget it.

I actually went to a grocery store yesterday (W.F. supermarket) after going for blood work but I only shop at stores with shopping carts so that I can hold onto the handle. Also the store wasn't that crowded which was good, I find it hard to maneuver through large crowds. (I also got some nice looking canes online from fashionable canes, a florida store.) I didn't like the hurry cane (cheap junk which falls over). Sometimes I can even walk short distances without the cane (on a good day) but I keep it near me because I never know when one of my feet is going to give out. After I got home from shopping I actually fell asleep. I never had these problems before I hit menopause, I used to have tons of energy for walking and doing chores, etc.

I hope I don't have to take any of those AI pills in the future, I probably won't be able to get out of bed at all. As it is I am struggling to take a shower (sitting down) every other day. Most of the time I just stay in the house and surf the net. I also have an exercise bike for my "exercise". What as sad state of affairs. My 81 year old mother is probably in better shape than I am at this point.

dtad

jendenino578...so sorry you are suffering. May I ask you to make your stats public so we can better answer your questions. Thanks!

JKL2017

Ceeceeboo, it was wonderful to see your positive post! I'm currently taking a one-month AI vacation but intend to (ultimately) complete 5 years (or more, if recommended). It's difficult at times but it helps to hear that the SEs aren't necessarily permanent. Thank you, thank you, thank you!

Ceeceeboo

JKL2017...so glad I posted, even if it helps just one person, it was worth it. It was so easy to get down while on anastrozle, but it was faith and family that helped me refocus. I am blessed. Please look forward and know that “these things, too, will pass."

jenndenino578

My only stats are that I had an abnormal mammogram in March, (architectural distortion). I then had a core needle biopsy that came back diagnostic for a "radial scar" and "not diagnostic for carcinoma" and I am having the radial scar removed next week to check to make sure there is no cancer hiding in it. I also had an MRI 2 weeks ago and I'm having a wire removal next week and I'm still waiting to find out what my stats are. I just come on this site to read what happens after a diagnosis of breast cancer. I lost my sister to uterine leiomyosarcoma back in 2002. So I do have a family history of cancer. I also lost a cousin to colon cancer (she was in her 50s) another cousin to childhood leukemia at age 9, another cousin had early bc in her 20's and my grandfather died from pancreatic cancer however he was an alcoholic and a heavy smoker which probably caused that.

Even if the radial scar proves to be benign I think it makes your odds of getting cancer go up? I'm not sure.