For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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For those of you having issues with this...is it joints (knees, hips, elbows, shoulders, etc) or muscles? Like you pulled a muscle or repeatedly lifted something heavy?
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Both for me. Some of it is arthritis I'm sure, others, not so sure. Then I feel like I've shoveled snow, but that goes away.
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For me it's joints...hip (R hip only for some reason), knees and elbows. No trouble with my muscles.
PB
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For me it's mostly knees though my fingers ache and my legs are weak. I tire easily as well. I am pushing through and walking around a lot.
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PNY For dry skin I use 1 part hair conditioner 2 parts Dove body wash to wash my body. My mom taught me that one.
pennsygal I switched to Exemestane (Aromasin) been on it for 2 years. Much better than Anastrozole.
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Hi all.
I see Claritin mentioned a lot. What does that help? I've been on anastrazole since 2/1 and so far so good. Some muscle cramps but not like I had on Tamox. More hot flashes too but not bad. Hoping it stays that way.
Happy Saturday
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NotAgain, the Claritin (regular, not Claritin D) helps with joint and bone pain for many. I am not sure it would help with cramps, unfortunately
Octogirl
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I have been on Arimidex now for 4 years. However now I suddenly find that I have a high A1C level of 6.6 and I have never had sugar problems before. I have been told by my GP to wait 3 months and reduce sugar and carbs and recheck the blood test. Has anyone who has been on Arimidex and had their sugar and A1C unexpectedly rise? I am 74 years old and had breast cancer and a lumpectomy and radiation 4 years ago. This sudden sugar high is upsetting me.
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Your PCP is being cautious. At 6.6 that is full blown diabetes. Last week mine was 6.7, it's been steady since starting arimadex 3 years ago. I have had diabetes for over 10 years, so I can't blame the pill.
Suggest you go to American Diabetes Association site for current, correct information.
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I am willing to try the cottage cheese and flax seed oil, but first want to make sure flax seed and oil is OK. I thought I have read along the way that flax seed is a no no, just like soy. Anyone? My right hip I'd hurting sooo much! I hope it is from something I did and not the Arimidex, but don't know. I have kidney issues and cannot take pain meds. I am just walking like a 90 year old!
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I was told no flax seed oil & only flax seed once in a while by the BC Cancer Agency nutritionist.
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BethL, my cholesterol went up on anastrazole about 30 points putting me right around the 200 mark. Yes it's from the meds. I exercise a lot and am on a Paleo style diet so I was able to get my HDL increased enough that I'm not in sheer panic!
Brutersmom, I just got my prescription refilled at Walgreens on 2/18 so I'm pretty sure Teva is still making Anastrazole. Your prescription benefits are almost always controlled by a prescription benefits manager company. Express scripts probably just has a preferential contract with another manufacturer. I'm currently fighting with my PBM over my sons medication and I'm sick to death of it. They want to approve half the amount the doctor wants him to take. So I hear ya,Sister!
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Teva is one of the largest manufacturers of generic drugs. I would be really surprised if they stopped making Anastrozole. They are based in Israel.
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The AIs don't seem to bother my cholesterol. I'm on Aromasin and my cholesterol is in the 190s, but only because my HDL is way above normal. Both HDL and LDL went down from the previous test, over 200, which was in 2011 before I was diagnosed with BC. I eat a healthy diet and exercise, but nothing over the top.
I think it is somewhat genetic how you react with nutrition and exercise being part of it. I have a friend who works out much more than I do and eats equally well. She is on meds and they still don't bring her down to normal. She's not had BC.
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I called my pharmacy and asked them to fill my script with Teva generic, if they had it, and they said that's their #1 generic for Arimidex. I got it filled at Target (CVS) and my regular CVS said the same thing. I don't think Teva is going anywhere... unless they stop distribution to the US.... Have to wait until rads are done to start taking it... watching, reading all of your posts, and waiting...
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Two weeks in and the claw hand, swollen knee, and numb fingers are back. The huge difference this time is that I know that all goes away once I'm off the meds, and hopefully while I'm still on it and my body gets used to it. Two years to go. I'm just going to put my head down and do this. Seems the name brand didn't make any difference so I just orderd the generics from Primemail, BCBS's online pharmacy. I hate to abandon my mom and pop Homeland pharmacy, but too many times I'd have to make a couple trips because they didn't have enough pills or the pills didn't come in when they were supposed to come in. Primemail is so easy and they arrive at my door in no time.
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Am new to this forum - not sure I am posting my inquiry in the right place -
Diagnosed with ILC in 2008; surgery and radiation; followed by 5 years on tamoxifen (pretty smooth, only some weight gain). Started on anastrozole in Sept 2013 - and right from the get-go I was questioning whether this was a good med for me. Ever since then, I've had what my surgeon has described as the "weirdest problem list" for someone who is more-or-less "healthy". Within a month of starting anastrozole, I developed subchondral bone marrow edema in one of my knees - thought it was a torn meniscus until a very skilled orthopod figured it out. (Doesn't anastrozole sometimes contribute to edema?) After that came several bouts of ocular migraines (I am convinced those are the result of loss of estrogen) - very scary at the time. Then a big forehead lipoma (maybe I can't blame that on anastrozole, but isn't that a form of edema?) Then I started having some significant dental issues - teeth shifting, fracturing, resulting in an extraction, bone grafting in my jaw etc. Through all of this, fatigue had been a constant companion, occasionally reaching "radiation treatment-levels". More weight gain, development of osteopenia, aching joints, carpal tunnel-like symptoms, lately I've been having prickling/tingling sensations that seem to travel around my body, spending a minute here and there. Every morning I wake up and ask myself, "what hurts, what's numb today?" It varies from day to day.
At every doctor's appointment since Sept 2013, I've questioned this med. Last fall my surgeon picked up on this (after she saw the lengthening problem list), and after many more consultations with all of the docs on my medical team, I'm about to switch back to tamoxifen for my last 2.5-ish years out of the total 10 years of hormone therapy. (My OB-gyn was especially concerned about what was going on with my teeth, and actually endorsed the move back to tam when asked about it.) It seems that the "bone loss" issue is what they are focusing on, in supporting this switch.
Has anyone on this thread made the switch from anastrozole back to tamoxifen? If so, I'd be really interested in knowing how that went. I'll have no transitional period, I'll stop the AI one day and start on tam the next. Did anyone else do it this way? Did your earlier side effects improve at all? Did you experience any issues with the transition? Any experience/guidance would be appreciated. Thank you!
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I haven't switched, yet. I think I will be the end of next month. My new MO seems to think I don't need to stay with the 10 years as originally told. It's been 3. Keep us posted, I'm sure interested!
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Hello, Sisterfriends....have been hanging out in the Lumpectomy Lounge and Fall/winter rads thread with those AWE.SOME women....started generic Arimidex about 3 weeks ago. Did not read anything about SE's before starting...only yesterday. Am all of a sudden exhausted like walking in quicksand and such lower back pain along with STIFF knees and ankles....walking like my elderly mother...I am 56- walking has never been an issue.....any suggestions for what to do? I've continued the Claritin?Aleve since chemo but dang.....
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hbbae - I went from Femara to Tamoxifen in an immediately switch over. Within a few weeks all the joint SE were gone. I prefer Tamoxifen but my onc really wants me to try another AI. I don't think you'll have any trouble.
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farmerlucy, how many weeks? Have been off Letrozole since first week in Jan and knees, ankles, and knuckles still hurt. Knees feel like bone on bone when I walk. Is it arthritis?
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I can't remember exactly - within a month for sure. I do take magnesium and an Alleve daily. The hand stuff and numbness was the most disconcerting. I thought I developed carpal tunnel overnight, relieved to know it was the meds. Still sleep with hand splints. Also use a silk sleep mask so my melatonin works well.Really scary when I get up to use the bathroom and see myself in the mirror!
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farmerlucy, thanks for the information that SEs improved even though tamoxifen was introduced. I think I'm hoping for some "evidence" that my hunch about anastrozole's effects on me was correct, and wasn't sure if being back on tamoxifen would mask this. We shall see! Totally relate to your comments about the hand stuff and numbness ... Is there a particular reason why your onc would like to see you back on an AI? Mine just wants me on something for 10 years ..
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My onc is really conservative and she thinks that there may be a possibility that my family history or an unknown mutation could trump all my good stats. I can't really argue with that type of care so I'll do it. AIs have been proven to be a bit more effective for post meno women.
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hbbae,
I took Tamoxifen from March 2014 until March 2015 with few side effects. I felt pretty good actually. Then, after an oophorectomy in March 2015, I started cycling through the AI's. My left knee/leg has been swelling since that oophorectomy. At first, I thought that it was tied to the AI's; since, every time that I started one, after a approximately a month, my knee/leg would swell. When I took a break, usually for a month, the swelling stopped. Weirdest thing -- I was put back on Tamoxifen (after 2 weeks off AI with resolution of swelling) and after a month, my knee/leg swelled again. My physical therapist thinks it could be lymphedema aggravated by the oophorectomy. I had a hernia on the left side near those lymph nodes as a baby...
2 months ago, I had a cortisone shot that cleared up the swelling. (nothing showing on MRI besides tiny meniscal tear -- not cause per orthopedic doctor) It returned suddenly last week.
Anyhow, my back and hip pain has been consistent since starting the AI's (no issues before AI's) and continuing on Tamoxifen. The extreme tightness in my Achilles that I experienced on AI's did not return on Tamoxifen.
My migraines returned with first round of Tamoxifen. Think it is lack of estrogen. I also experience fatigue daily.
My jaw has had weird bone growth... I have split 2 teeth. No bone loss -- I am on Zometa, though.
Not sure if any of my experience helps?I find the issues of SE so frustrating! Would like some normalcy in my life! Hope you achieve some!!
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My BIL complained for years of knee pain. He was in his late 40s, when he had total knee replacement. He still had the pain, getting worse. They finally did an MRI on lower spine and hip. Bingo! It was the hip that had been the cause. Maybe your ortho should look a little higher?
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daisylover,
It is well documented that women whose menopause was chemically or surgically induced have more severe side effects from AIs. The three most reported were joint/muscle pain, fatigue, and insomnia and were most likely to lead to non-compliance. Tons of info out there. Just search on "AI side effects" or "AI non compliance." It's pretty much the same for all the AIs.
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daisylover,
Your message resonated with me. I see you had ILC, as I did. I too felt pretty good on tamoxifen - and I knew the AI would be different, but was still surprised at how quickly I began to feel "not myself", and then within a month, the problem list began growing - both the chronic stuff (fatigue, numbness, aches), plus the odd things (the knee edema; the ocular migraines; a large lump growing out of the middle of my forehead - my inner unicorn attempting to express itself; the "sudden, urgent" dental stuff requiring surgical procedures and bone grafting). At one point I even wondered if I might be having an allergic reaction to the drug (mostly during the vision episodes, and whenever there's been a sustained bout of tingling, which fortunately is not too frequent.)
I've been asking my docs about anastrozole's impact on teeth, and from their reactions I think I've been the first one asking them this question. There's not much research out there. But there's a clear connection between osteoporosis and teeth, so I can't help but connect the dots to a drug that causes bone loss, even if I'm "not yet at osteoporosis"
I only just learned of the BCI test, after scrolling through some of the other helpful messages on this thread - so I wrote to my doc to ask her opinion of this test. I "don't mind" the thought of continuing on meds until the 10 year point, if I can do it on tamoxifen and if my experiences with it are as benign as they were the first time - but if there's additional useful info to be had, maybe that's something I should pursue. (although my surgery was in 2008, and some of that tumor was used for Oncotype, so I'm not sure how much of that tumor is left, for additional testing purposes.)
Thanks for sharing your experiences -
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Ladies, please keep in mind that not everyone has SEs from Anastrozole or other AIs. I do not and there are other like me who don't post much here since we don't need to find solutions to the SE problems. I've no idea why one person will have SEs and another doesn't. Even time between entering menopause and starting AIs doesn't seem to matter. For me it was 25 years. I had no problem with menopause either. It is totally baffling. Hoping that you find answers to your awful SEs!
HUGS!
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I had issues with Anastrozole but I'm doing great on Exemestane. Been on it for 2 years (3 years on Anastrozole) and probably going to continue with 5 more.
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