For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I am relieved to know I am not the only one experiencing these side effects. I have been on anastrozole for 4 months and was symptom free! It seems like overnight I started with hand and knee pain which I have never experienced before. Daily workouts do not seem to keep these symptoms at bay. I read somewhere that after 6 months the side effects should subside but after reading these comments that does not seem to be the case. Has anybody had any luck taking glucosamine or omega 3s?
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seagodess2021, sorry I cannot help with your issue as I had minimal side effects, mostly a few months of a hot flash, which to be honest, I would have gotten without Anastrozole too! I gained about 15 lbs and that too because I ate right and exercised. But during covid, I amped up my routine and lost those 15 lbs too.
oldladyblue, I have been on Anastrozole for the last 6 years. It started with 5 years, but because of my age when I started (47), they told me a couple of years ago that new studies show 10 years is better for me. I was aghast too but then we thought let's go with 7 and then we will talk about it again. My mother-in-law who went through this in '90, had Tamoxifen for 5 years too, so looks like 5 is the number doctors like! I am sure your body will adjust to Anastrozole, and your mind will also think it's better to take it as it means you are keeping cancer recurrence at bay!
Also, I am sure your oncologist must have mentioned or will mention that it affects bones, so get a bone density test every two years to make sure it's all good.
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Good advice. Thanks!
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Hi Ladies - I started on Letrozole in December 2020, but switched to Anastrozole June 2021. For me the SE are similar, except no GI issues with Anastrozole. I mostly have hand issues, although I’m not sure if my shoulder issues are Anastrozole or from the mastectomy. I had arthritis before my BC diagnosis and the medication that was working for joint painbefore I started AI drugs isn’t as effective as before. I do take omega-3 (salmon oil). My rheumatologist recommended it. Didn’t help my joint pain, but did lower my cholesterol. I do try to stay active, which helps. Right now I’m recovering from hip replacement, so I’m starting to feel achy in places that were doing ok before.
My MO says 5-10 years on AI drugs. Decide where things stand at 5 years.
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old lady blue - it took me 3-6 months to get through the insomnia and someother SE. But I'm now past year 4, looking at 9 more months. It's doable, but boy oh boy I'll be glad to get off of it. I also started out at every other day, as prescribed by my MO. Good luck
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oldladyblue: I started on letrozole for about 8 months. I had really bad joint pain. Switched to anastrozole and haven't had any problems. Ask your doctor to try one of the other AIs and see how you handle it. Also, I'm taking an antidepressant for the hot flashes. It has stopped any hot flashes and helps with my mood as a side effect. Good luck finding the AI that will work for you.
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cardplayer, I am headed for a knee replacement in August. Did you go off your AI prior to your hip replacement?
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racheldog - I continued on my anastrozole. I did have to stop a couple medications, including OTC ones. I hope it goes well.
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Thanks..orthopedic docs know little about these drugs. Only hope that because they can cause bone loss it does not disrupt or cause failure in the implants.
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racheldog - Maybe check with your MO to be safe. Hadn’t really thought about the bone loss implications.
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Racheldog, I have had two knee replacements within the last few months and continued taking my AI throughout the entire time. I have a close friend who is a recently retired oncologist and he is my go-to for all my cancer-related questions that my own MO doesn’t answer to my satisfaction. He had no concerns about my taking an AI during or after my knee replacements. Good luck with your surgery
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Hi ladies and thanks for your answers. I feel better having some communication with you. Thanks for sharing our own journeys. Seagoddess I will try the glucosamine and Omega 3's, can't hurt for sure. Cindyny and Nipab I do hope that my body will adjust to this med. Thanks for reminding me that my mind would be much more worried if I stopped taking it. My scores showed that the AI will reduce risk better than chemo did, and I survived the chemo, so should survive AIs. I called my Hema/onc and requested to be scheduled for a bone density test. Haven't had one yet. Kamboka I will ask about switching at my appt end of June if I am still having a hard time with Anastrozole.
I guess overall, I am tolerating this well. I just remember how good I felt 3 weeks after rads ended, and how the AI hit me when I was "high" on feeling better from chemo and rads. Sigh.
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seagoddess - to learn that you were symptom-free on anastrozole for 4 months before the painful se's showed up has given me *tremendous* relief that i'm not crazy, delusional, over-dramatic, imagining things. i imagine others may have noted a similar experience weeks, months or years ago on this thread, but i found yours at the exact moment i needed it. i just wanted to tell you this. thank you.
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Edge_ - So sorry you are having rough side effects. Going back to read the past items on this tread is daunting. I'm up to like page 6. Glad you came here at the right time for help and that Seagoddess's post was there.
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I'm so glad! That is why this forum is so helpful. The medical profession is quick to brush over these symptoms that affect our daily lives. We are not imagining it and lets hope these symptoms ease up!!
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jkl2017, thanks for your update about your TKRs. I think I still plan to stop the Letrozole (just hated , hated having to go on these) only because I am feeling a bit wonky, with some cognition issues at times on the AI. Sleepiness, tired. To me when you go through a joint replacement you need to be 100% dedicated to rehab. I breezed through my first knee TKR but am not the same person four years later after this BC journey .
I certainly have read many articles lately on these AI drugs affecting cognition and brain activity. More studies are needed! Of course, have not had any oncologist bring that up. They are quick to dismiss side effects. Will be my decision to stay on these but the thought of 5 years is awful.
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racheldog, you might consider trying another AI.I took Anastrozole for a year and experienced horrible side effects. My MO never acknowledged that they were all connected to the drug but when I took a short vacation from it and almost every SE disappeared within days, I was convinced! She offered to prescribe another AI and I began taking Exemestane. I have had some mild SEs while on it, but nothing that I can’t handle. I have now taken it for four years (plus the year of Anastrozole) and will likely take it for at least two more years. These drugs are far from perfect but, with a life I love, I’m not ready to give up yet!
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Thanks for your post about changing hormone meds jkl2017 . The thought that maybe these SEs could lessen for me is wonderful. I had a mental meltdown yesterday in my husband's doctor's office, and one the day before in a retail store, each time yelling at the managers there. My husband was soooo embarrassed and said he thinks it's the hormone blocker as I wasn't like that all through my breast cancer treatment till now.
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HI All,
I started anastrozole last week and I feel like crap. I can live with the hot flashes, the Effexor seems to keep them mild. I have sore joints, not terrible but I am 48 and not used to joint pain. I exercise regularly but even that is less enjoyable with the low energy. My skin is as dry as the Sahara dessert no matter how much water I drink. I have an upset stomach and no energy. Please tell me these SE’spass. 10 years is a long time to feel like this.
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beginagain22, I'm hoping it gets better for you. I think I've been lucky as I had no SE's that I can remember from Tamoxifen or Arimidex. I'm two years into Arimidex, but I was post-menopausal when I started it.
I'm sorry you're having a rough time with this. Do you keep a journal of how you're feeling? It might be interesting to track it. You can see if your SE's get better or worse and if they become intolerable you can talk to your MO about an alternative.
(((hugs)))
Carol
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beginagain22 - I’m also post-menopausal. I had pre-existing arthritis in my hands, wrists, neck and lower back, but some of my pain increased. I developed trigger finger and did occupational therapy which helped. PT definitely helps with when I’m not able to work through the pain on my own. Hopefully the SE will reduce and you’ll feel better
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I am still having joint pain, hot flashes, insomnia, mood swings and dry mouth from the Anastrozole. I hate the way I feel. I had no arthritus before this medicine, and no hot flashes even when I went through menopause 10 years ago. I cut the dose to every other day and it seems to make the side effects less. I will up the dose again when I feel like I have "gotten used" to the side effects as they are now.
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I have been on Letrozole for 1.5 months and I will not try out Anastrozole. Kind of like a why bother and I do not think one is better than the other. I hate the way I am starting to feel and I am taking the AI every other day as well. That may be the best I will do before quitting completely. The brain fog is something I never had and even thought I have had multiple joint arthritis before this drug the aches seem to be worsening and I am walking like I am a 90 year old. Really trying to be careful. I breezed through menopause and now have had some hot flashes so I know even taking this every other day that my estrogen is dumping. Also way more tired now than I was even during chemo.
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Sigh, I understand Racheldog. The brain fog is terrible for me, I used to be quick minded and had a great memory, felt young and alive and energetic before this AI. I'm not sold on doing this for the next 58 months. But I haven't quit yet.
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Well, I quit for the past two days. Got my booster (and this time had chills and fever just like the first time) and I am glad I did not put Letrozole in the mix. I have a funeral to go to this week so I am going to stop for a week. I do not want to feel awful for that event either. I think my head already feels more normal.
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I’ve got 9 more months to go. I’ve never taken a break because I know I wouldn’t want to go back on it.
If it’s any consolation the brain fog, dry eye, dry mouth, and other SE did get better for me 3+ months in. But hell as it’s happening. You know I’m counting down the days to quit this.Good luck to all you ladies.
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I guess I am blessed with minimal SE. It will be 5yrs this November. I remember staring at my first Arimidex on 11/05/17 before swallowing. Onco told me 7yrs. I may ask for Letrozole after November.
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I need to get my booster too Racheldog, I still feel the reason my covid in Feb didn't put me in the hospital is because of the 3 prior shots.
Castigame, I stared at the pill bottle for a week before I started.... Minimal SEs good for you. I hope the next 2 on Letrozole goes well for you too.
Cindyny, wow done in 9 months! Maybe my SEs will get better, I guess I'll hang in there for now.
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Hi there,
Is anyone on Arimidex for life like I am? I've been on it since December and feel fortunate to have minimal side effects that I will just deal with. Stiffness, brain fog, yes, but I just keep telling myself that it is minimal if it keeps the cancer away. Honestly, some days are just horrible, but I don't want to stop and have my cancer return any time soon. June 15th will be the anniversary of the day I got my "you have cancer news."
I'm not trying to down play anyone that is on it for 5 or 10 years, I'm just wondering if anyone else has been told it will be for life like I was.
Thanks,
Amanda
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Kotchaj, I've never heard of anyone being on AIs for life. Not that I have heard everything. I don't know where you are located or your age and those are things that can influence how long you are told to stay on Arimidex or its cousins. I was on Arimidex for 5 years. I was diagnosed at nearly 70. I had no problems with it. I also took Fosamax to help protect my bones. For the stiffness, I took Claritin (NOT Claritin D). And that helped me. It was never bad, just annoying. It might help to ask your medical oncologist why he/she thinks it is necessary to stay on Arimidex for life. Good luck!!
HUGS!
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