For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I did have terrible SE's from quite a few of the AI's, but I did my research, talked to my Onco, my PCP, RN's and the Cancer Agency pharmacist & discovered that it's not the drug that is the problem in my case, it's the fillers used by different manufacturers. Once we figured out what the problem filler was, the pharmacist was wonderful about getting the lists of ingredients from manufacturers, I went through 4 different AI's & Tamoxifen before I found one that was good for me.
I now have very minor SE's, occasionally a hot flash, a bit of joint pain & stiffness, but it's better than the alternative. Never did any Dr tell me all the SE's of any drug, I was given a handout of the well know SE's & told to read the enclosed literature that comes with my prescription. GG
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GG27, you found that needle in the haystack! I suspect that more than a handful of women are reacting to the fillers rather than the drug itself (and that does not mean that I think that's the problem with everyone - I don't; SEs are very real). You also had a fantastic pharmacist who was willing to work with you to get you the right drug/filler combination. HUGS!!!
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Peggy, Yes, I think there are a lot of women out there who are getting SE's from fillers rather than the drug. One of the most used fillers is lactose. If you are even a bit lactose intolerant the lactose in these drugs & all the supplements that some take will push you over the edge. I found out that I am actually allergic to lactose, not just intolerant, it makes my joints aches so badly. So I have to check everything that I take. My anastrozole has a minute amount of lactose in it, which is why I have a bit of joint pain, but I'm willing to live with it for as long as it keeps me stable.
The Cancer agency pharmacists are great, they don't mind helping out patients especially when it's something interesting & different such as research & my local small town pharmacist is the same, if I give him time, he will research just about anything that I need info on. Cheers, GG
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GG27, you do have a wonderful support group behind you in your pharmacists. Obviously you fit the "interesting" category!! I'm so impressed that you figured out that lactose was your problem. Way to go!
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I am having leg pain right now, and am doing my own experiment to determine if it is the Arimidex but if it is, I will for sure try something else. I am like one of the other posters, the side effects are not enough to make me risk this coming back. But, I do want to figure out if its what is causing this pain and either change to something else or add something to this to counter act the pain. Any of you who have a lot of pain in your hands, did you already have arthritis in your hands? I just wondered if it just makes problems a person may have already had worse.
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Angelina, my onc says what it does is make it feel like preexisting joint issues are getting worse, but that they are not necessarily doing so. I had horrid hip pain that I thought was from the drug, but turned out to be ordinary, everyday, bursitis. PT fixed it right up. I'm taking glucosamine and chondroitin right along with my pill, and I think/hope/trust it helps the joint issues.
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Brookside, thanks for those words. I admit I haven't been the best about taking my calcium, but I"m trying to do better. If the pain goes away in a couple of days, I"ll be pretty sure its the meds. I had hip pain before and stopped for a week and it left. I haven't ever taken glucosamine, but I may try it and see if it helps, once I figure out if the meds are causing this.
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GG27 that's interesting about the fillers. I am lactose intolerant. I wonder if taking something like Lactaid along with the AI would help? Maybe taking it throughout the day?
After my Ax incident and reading here about the filler issues I asked my pharm to get me Ax from Teva and he said he would. Never heard from him again. It's so overcrowded where I live and everyone is understaffed and thus things get missed in the melee.
Spookiesmom who did you block and Peggy why did you give a thumbs up to it?
It's really sad when some people can't tolerate even the opinion of another.
My BFF was on an IVF forum and said all the gals are so supportive of each other.
She told me recently she's been reading around here and feels it's hostile and made a really good point that she thought people fighting a deadly illness would be far more supportive to one another than what she sees here. That's really sad.
Here we are, sisters in cancer and blocking one another.
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Ladies, Another reminder that if you are in Southern Michigan or willing to drive, several BCO gals are meeting April 18th outside Jackson, Michigan. Here is the link to our group: April 18 Get Together
We'd love to have more of you join us!
Peggy
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Cee67, I thought the point about patients not getting warnings about aspirin and Tylenol were valid. THAT's what I gave a thumbs up to. I certainly am not saying you aren't having issues, that they aren't valid. I am not blocking anyone. I'm sorry if I gave that impression. You're having a really tough time. I hope that you are able to get the Teva manufactured Arimidex if you decide to try again. Perhaps it will cause fewer SEs. Who knows? My guess is that Lactaid might help - I don't see that it would hurt anything. Good thought! HUGS, Cee. I hope you'll feel that I am being supportive - I do try to be.
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cee, before you try the Lactaid, I WOULD Ask A Pharmasist or Doctor first. There are some weird drug interactions around. Like grapefruit and cholesterol meds. But is you get the ok, will you let us know what happens? We are all interested.
As for being supportive here, I've found BCO to be pretty good in that department. Yes, certain boards flame occasionally, but normally, people seem to be tolerant. I think when people say they didn't have a problem with an AI, they're not saying that it's all in your head, but they are probably trying just to give the information out for everyone to see that the problem is NOT universal. That information is also important.
I'm having cataract surgery on my 2nd eye on Monday, so won't be able to keep up for a while as this thread moves fast.
Hugs and much love to all.
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angelia: if you decide to try the glucosamine be aware that it takes 4-6 weeks for effects to be noticed. I started taking glucosamine chondroitin with MSM many years ago for my achy knees and was told that, did some experimenting on my own to see how many pills a day I needed, and found that 4-6 week span to be pretty accurate.
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Peggy, I thought you were thumbing her up for the blocking comment. It's how it looked. I'm not saying anything about the aspirin comment not being valid but given that we REALLY need to be advised better on AIs which can be far more frought with se issues.
I will definitely ask before mixing medications and thank you for the heads up!
Moonflower good luck and fast recovery to you!
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thanks Puffin. I will keep that in mind. Glad you mentioned that because in a few days, if no change, I would have quit, assuming it wasn't helping at all. I have never been a pill or vitamin taker. I did have a density test in August, when I first started taking the
Arimidex and it showed no problems. Hopefully, this pain will stop and I can figure something out. It is very weird, feels like the muscles around me knee are tight or something, thats why I'm worried the screws from attaching the replacement to that bone are shifting or something. Hope not.
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hey Monica, in your pocket for cataract surgery on Monday! ♥
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Cee, I can see why you thought that. Sorry for not being clear. I agree that we need to be given as much information as possible about AIs. Definitely good to check about drug interactions. Good luck.
Angelia, Good luck with the supplements.
Monica, good luck with your cataract surgery. It was one of the few that DH had no trouble with! Let us know how it goes. Hopefully you'll be back online in a day or 2.
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Am restarting anastrozole after taking a break while on chemo
Dr never said anything about aspirin or Tylenol. Can some one fill me in please? Thanks!
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It was an off-topic remark, Chloesmom.
From my point of view, I've been cautioned about aspirin (bleeding) and tylenol (liver) more than any prescription drug, but not in relation to arimidex.
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I have so many drug allergies that I always research any drug prescribed for me. With Arimidex, I didn't see anything that shouted NO to me. I read here that many women had fewer problems with the Teva manufactured anastrozole (due to the difference in fillers), so I requested it from day 1. So far so good.
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I agree the docs need to inform us, but I firmly believe, and tell them, that I think it is also my job to educate myself, so I can carry on a conversation with the docs about options, etc. I don't buy into the whatever they say is gospel. It is my choice at the end of the day, and as a team, I makes my decision based on my research, and their advice. And, things happen all the time that are weird. Take my wrist . Could be due to the AI, could also just be the way I hold my hand.whan I type. I think its the latter, but no proof
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Angelia, increasing your exercise helps with bone density and joint pain. I started walking 2 miles daily after my diagnosis and kept it up till the weather got bad. I am starting back into it again as I am starting my AI tomrorrow after a break.0 -
For those of you who have hip pain and perhaps have been diagnosed with bursitis I've had tremendous good luck with a steroid shot - actually two - the first one lasted over a year and the second one I've had for four months and the relief is incredible - it makes all the difference in the world as I can exercise without being in agonizing pain. Many ladies on here have recommended Claritin and I must say I started taking it after one of my knees "went bad" and honestly after a couple of weeks the pain was gone and I didn't have to take the Claritin again but will as soon as the pain starts up again - my onc actually said to me at last appointment that "many patients seem to be arthritic after chemo" I nearly fell off my chair - I mean, I knew I'd never had arthritis before but to have my onc say that - must say I felt much better after hearing it.
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My experience with my onc is similar to brookside- at my first visit he wrote everything down for me as well- sounds like a best practice - knowing patients will be overwhelmed still first visit and often forget key details after the appt I wish all oncs were as adept at educating their patients.
Also my onc went over the ai side effects with me - and I read in detail others experiences as well. I started on Ferrara was miserable and my onc switched me arimidex. Been taking arimidex 3 1/2 years. I plan to take ai for 10 years
Yes I get achy , especially bad with an impending thunderstorm, I am stiff in the am, gained weight - and yes it can really suck at times- but I am only 45- stage 3a - 41 at diagnosis. Ai's for me are part of my treatment plan to keep me cancer free for as long as possible. I am choosing the side effects etc because I need to be here for my family as long as I can.
Also there is a clinical trial right now , that has women taking omega 3 ( I think that's the vitamin)? to reduce joint pain from ai's. Also there is another one that pairs vitamin d and letrozole. So it seems like the medical community is getting a clue about the Sid effects of ai's and attempting some solutions.
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I noticed yesterday that I haven't had the achy pain from the AI that I had been having. I used to ache by the end of the day every day. Others have recommended it but I'll say it again. I think this is due to exercise. So I would encourage everyone to exercise and keep at it because this didn't change for me until several months of exercise, although I do think it changed my mindset from the beginning. What I mean by that is I felt more like an athlete in pain rather than a cancer patient with drug SEs!
I do still have the trigger thumb but its not painful anymore - it just doesn't bend like it used to. I really believe that we need to be careful about repetitive injuries because the drug may make us more prone. I got mine after squeezing my malfunctioning mouse every day. It improved when I got an ergonomic mouse.
As a former arthritis sufferer, I didn't really find a lot of benefit to Omega 3s (took that), but one thing I did find that helped is ginger. To this day I continue to eat pickled ginger that you get with sushi once or twice a week.
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OK. I'm going to try Omega 3 and ginger. Do you think the regular ginger will work, Penny, or just the pickled kind (happy to have sushi a couple of times/week). I have to wonder also, about whether more than one onc helps with the note-taking. Are you treated in NH, by any chance?
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" What I mean by that is I felt more like an athlete in pain rather than a cancer patient with drug SEs! "
TwoHobbies, Yes, Yes, Yes!!!
Exercise! You will feel stronger, more empowered, and ready for anything BC throws at you. 0 -
Bottom line with AI and SE… you won't know till you try. You can always quit or change your AI if the SE are bad. Metastatic breast cancer is something you can't quit!
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Lago, AMEN!!!!
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Hi all- I am new to this board. I finished radiation and started on Arimidex. My MO also told me to take Caltrate with vitamin D. Does anyone else take this? I was also would like to know if Arimidex comes is different mg., or are we all given the same amount. ?
I want to thank everyone who has posted on these boards. It has surely helped me and prepared me on what to expect in this next step of my journey. hugs to you all.
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