For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I have been on Letrozole since March of 2020, and my doctor switched me to Anastrozole today to see if it would lessen the joint and body aches I've had from Letrozole.
Has anyone else switched? Did it help?0 -
tmh0921: I was on letrozole for nine months with lots of joint pain. I switched to anastrozole. I've been on it for eight months or so and have not had any joint pain. Give it a try and maybe you will be lucky too. Good luck.
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Believe Stephen Fry is referring to losing 14lbs (= 1 stone, as used in the UK) by walking. Go for it! Exercise along with keeping well hydrated does seem to lessen some of the side effects.
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Totally agree CeliaC. I try to walk 2+ miles every day. I still have joint pain but think I would be a lot worse if I was sedentary.
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Just finished Herceptin and radiation and now on to the AI. I picked up my first script for Letrozole. I felt like it was a sad day to pick up a script I never thought I would be on and hate the idea of taking!
May I ask of everyone.....who has either gained weight or lost weight on these drugs? The only part of my BC journey that I was happy about was that I lost about 18 pounds on the Kadcyla and the thought of now gaining it all back on AI drugs is disheartening.
What have you all experienced?
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I'm only on it since July, no major weight gain, a lb or 2 maybe 3 but I'm walking a lot and it's going fine. All OK except for aches in my bones. X
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Racheldog,
I lost about 20 lbs after my initial diagnosis. I made some major lifestyle changes like exercising daily, limiting sugar and alcohol to only very special occasions (and even then, only in moderation), and eating a whole-food-plant-based diet. I was 42 and premenopausal when I started, and have been on Lupron/anastrazole for over a year. I haven’t gained any of that weight back. This past year and a half, my weight hasn’t fluctuated more than a pound or two. I guess that’s my long way of saying that endocrine therapy hasn’t caused me any weight gain.
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Racheldog - I lost 35 or 40 pounds during chemo and have kept most of it off in spite of the AI (Letrozole in my case) for 21 months. I had some stomach trouble for awhile and lost a few more, and I have put those back on, since I've been eating more normally again. Like jennyjo20, I only do alcohol and sugar on holidays or special occasions; once in awhile on Sunday, just because, but keeping it in moderation. I do a lot of plant stuff along with fish and occasional chicken or turkey - I never eat as much as I used to, because I think the AI has actually lowered my appetite. I rarely strongly desire or crave anything. Sometimes I feel like I eat "just to eat", and I think the AI is the cause of that. I also do intermittent fasting (16/8) try to walk about 5 days a week for 30-45 minutes. I take the stairs a lot more now, park farther away than I need to, so I get a little more walking in, etc. I don't do any kind of gym stuff though. Just routine walking and getting up and moving around. So far my weight has been stable and my cholesterol is normal.
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Same as ThreeTree, letrozole has lowered my appetite, and my weight is the same or maybe a couple of pounds less than before. I always liked fruit and veggies and continue to do the same. The only change I have done since the diagnose is going cold turkey with alcohol. I used to like a glass or two after work but now it is only water. I don't have much appetite and have no problem with cholesterol. Joint pain and weird pains, yes.
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Well, I'll be and thanks for the positive vibes about the AI drugs. I will be doing Letrozole soon. Like some of you, I lost 18-20 pounds on chemo and that was the "good" part of this journey. Herceptin put some water weight back on with fluid retention but that should be going away soon, I hope.
Trying to do more plant based but that has been a challenge and a tough one to overcome my past diet. I do not drink alcohol but getting rid of sweets I plan to work on. Thank you all for answering about the weight issue concerns with these AI drugs.
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I have been on anastrazole for 4 months and like another person mentioned my side effects fluctuate and are manageable: sleep problems, fatigue, joint pain, eye discomfort etc. (I am continuously on weight watchers to prevent weight gain, am active, eat well and drink alcohol socially and when on vacation. Recently in the last week or so I am having some skin sensations like itchiness and random pin pricks like I’m getting bit by an insect but there’s nothing. Has anyone experienced anything like this? I also have a cough that comes and goes. I’ve read that these could be side effects but who knows.
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Hi — I have just begun treatment and was prescribed IBRANCE and Anastrozole….for 8 days , all was well…and then suddenly I had severe hip pain, swelling in both hands and aching, and aching in my neck…the hip so bad had to start using a cane. My oncologist had me stop the Anastrozole for the weekend and up my Tylenol, and I see her tomorrow, anyway, so hope there is some solution. Anyone else have this experience and what happened?
Thanks for any help….
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Six weeks in on my Arimidex journey. Doing ok. I’m definitely stiffer in the morning… some aches and pains at night in bed but once I’m up and moving, I feel fine. Not feeling like I need a nap during the day anymore ✅ I’m deliberately ramping up the daily exercise - spin, deep water aquarobics, walking, full body resistance band workouts and have now added a ‘Lift Only’ class to crank up strength …. My baseline Bone Scan showed I’m in the middle of the Osteopenia scale!!! Sheesh! Another totally unexpected health issue! Enough already. I told the dental hygienist at my recent 6mos clean that I didn’t want to know if she saw something amiss 🙄. She didn’t say anything 🤣
I’m wondering if my metabolism has taken leave… despite a lot of activity and conscious effort with Noom program over the last 6 weeks, I haven’t lost an ounce. 🤨
Will try more protein …. More strength /muscle building….
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LadyGwendolyn, to help with that morning stiffness, try taking REGULAR Claritin! For some reason it helps - crazy as it seems. Do NOT use Claritin-D for this. I took mine at night because I wanted good "coverage" when I get up in the morning and am creaky. Good luck.
HUGS!
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LadyGwendolyn - Arimidex makes it tougher to lose weight once you gain it. I had to go on a "plan" diet which I did drop the weight, but over the last 4 years I gained it back. I'm on it again and have lost 15 lbs (about 1/2) , but just found out it has a lot of soy protein, no bueno! So I'm going to wrap it up when I'm out of food whether I reach my goal or not. I'm searching for a way of eating that would be healthy, prevent a reaccurance and maintain my weight.
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Hi, I'm a 42 year old that is currently getting a Zoladexshot once a month and taking Arimidex every day (5.5 years). For the most part, my SE are tolerable. However, the past three months my SE seem to have kicked it into high gear! Joint pain everywhere, digestion issues, mood swings. I am thinking about stopping AI or Zoladex, or both. I'm concerned of the SE of what happens when you stop taking everything at once. Should I stop one first, or go to every other day to ween off it? I have an appointment with my oncologist and will obviously discuss with her, but I wanted to hear from mypink sisters of your experiences..I apologize if this had already been covered somewhere. I'm new to the forum.
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Hi! I have been on Anastrozole for two years. Recently I have started devoloping some anxiety and depression issues. Has anyone ever developed this side effect after being on it for quite some time? Thanks for your thoughts.
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Yes! My body starts to react as if I'm panicking - heart pounding, body tension, breathing up - but there's nothing remotely threatening going on. My frontal cortex is, "What's up, dude? We're fine." But my limbic system is all, "AAAAHHHHGGGGGHHHHH!!!!!"
I tried to talk to my doc about my weird anxiety attacks, but he didn't really understand what I was actually describing. He wanted to put me on a 24/7 mood regulator medication, but I didn't need anything that extreme. When he went on hiatus and passed me on to a new doc, I hadn't had any recent episodes, so I didn't think to bring them up. Now they're back, and I've just been moved to annual check ups instead of quarterly. I'm debating whether I should make a special appointment or not bother.
I've also had a steep decline in motivation, lack of general follow through with plans that aren't urgent, and I feel overwhelmed a lot. But I'm not sure if that's from my medication or from being a naturally extroverted person trying to cope with the isolation and stresses from Covid precautions.
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christiekoe: I'm on anastrozole for about a year now. I've had no problems. However, I started taking an SSRI for hot flash relief and I think that keeps my mood under control. I'm prone to periods of feeling down but haven't had any in almost two years.
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Christiekoe - I do weekly REIKI therapy sessions and attend monthly Breast Cancer Support Group Meetings. In addition to daily walks, these have really helped to help keep my stress level low. Does your oncology center or hospital offer support services? You might find something there that would be helpful for you.
Most of my anastrozole issues are aches and pains. Physical therapy helps, but my body snaps, crackles and pops every morning.
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NSBrown54, for those morning aches and annoyances, try taking a REGULAR Claritin everyday. It seems weird but it really does help. Do NOT take Claritin-D for this. I found it really helped. I took it at night.
HUGS!
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christiekoe, I experienced severe anxiety, agitation and insomnia from the minute the pill hit my tongue. I've tried them all. I currently take letrozole every other day, and I take lunesta to help me sleep, but still doesn't work great anymore.
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Thanks for the suggestion PontiacPeggy. I’ll check it out.
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NSBrown54, I also thought it was so "out there" when I first heard using Claritin. But I had nothing to lose and it was already hanging around my medicine chest (though it doesn't work on my allergies AT ALL! ). But work on those aches and pains, it sure does. If you have major aches and pains, I'm not sure how good it would work, but possibly help some. For minor ones, it did make a difference.
HUGS!
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Just starting year 4 of Arimidex, and my dexa scan from 2 weeks ago show definite decline in bone density. I also have been on steroids for last 8 months for another condition. My dr is advising me to start Fosamax weekly. I do have trouble with heartburn and reflux and do take a pepcid everyday. My concern is tolerating the Fosamax and asked about alternatives to it. So either Prolia injection twice a year or Reclast IV yearly. Anyone have experience with these drugs?
Thanks.
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BJI, I took Fosamax for 5 years and I have acid reflux also. I took it in the morning, waiting 30 minutes after taking it before eating. It is quite doable. I also was taking pepcid. Just follow the instructions and you will likely have few problems.
HUGS!
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BJI - I too have acid reflux, like Peg. I’ve been taking the generic fosamax for about two years. I’ve had no problems with it. You do take it as you get up, take w plenty of water, before you eat anything. No laying back down, stay upright. In fact I was approved for Prolia but being I had no side effects from the fosamax, I stayed w the devil I know. I’m hoping in 1.5 years when I’m done with the AI I can be done with fosamax too. Good luck to you.
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PontiacPeggy - did you see results on dexa scan on the fosamax? I know they check it every 2 years, just wondering does it slow or stabilize the bone loss?
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BJI - I went from osteopenia back into normal ranges. Bein on this med my insurance allows a yearly dexa scan.
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BJI, I know that I had no more bone loss but whether it improved or not can't be ascertained. Two years after starting Fosamax, I moved from Detroit to Spokane and they used a different type of DexaScan or something so there was no way to compare results. I discontinued Fosamax when my 5 years of Arimidex ended. I never had an issue with it. Definitely worth a try IMHO.
HUGS!
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