For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
sunshine, I am with you on advising caution on the advil/aleve stuff. I never thought I took them much but one day had a wicked allergic reaction as in an asthma attack, can not handle any NSAIDS now and only take Tylonel on rare occasions. Many folks do not realize how careful they should be with the OTC meds like that
0 -
Seven years ago I had a near fatal allergy attack while taking Advil - I had hurt my back gardening and had only taken four pills over four days - anyway I ended up at Emerg and was told NO, NO, NO! These drugs can cause your kidneys to shut down - so it's Tylenol Arthritis for me and I only take one pill at a time not the two recommended - for severe pain I take either Tylenol 3 or Dilaudid - the T3's make me quite dizzy and sick.
0 -
I will have to try the Tylenol Arthritis...
0 -
Hello all! I haven't checked in here for a while but wanted to let everyone know that even if you have SEs they may resolve on their own at some point this in time. I initially had trigger thumb in both thumbs and some joint pain as well as serious fatigue. Trigger thumb and aches cleared up with time. Still have fatigue but believe it's the result of sleep apnea rather than meds. Have an appointment at sleep disorder clinic next week and will gladly try the CPAP device if it will help me get quality sleep😴. Early December will be three years on arimidex for me.
Hang in there - y'all have a great cheerleader in Peggy!
0 -
SweetAndSpecial (from my state, no less!), thank you for the kind words. It is easy to overlook that many women have no or few issues with Arimidex and some, like you, have them disappear with time. My heart goes out to those who do so want to remain on this drug but just can't cope with the SEs they are experiencing. But this is the best place to get help for those with SEs and encourage those just starting Arimidex that it is doable.
Good luck with your sleep test! If you do have sleep apnea, a CPAP is likely to make you feel so much better!
HUGS!!
0 -
PontiacPeggy, love your post from the 15th. We usually don't look at other meds, prescribed or OTC, with the same scrutiny. I'm also one who had few SE's on Arimidex/Anastrozole. The ones I had went away with or without intervention. I do understand that some have horrible SE's and need to stop or change but many who have no problems are not posting. Thanks for your great insight.
My new PCP, an endocrinologist, wonders why I'm still on an AI almost 7 years later so he will be talking with my new oncologist (I moved NJ to FL so have to get all new docs). My days on an AI may be coming to an end but it's a little scary wince my BC is ILC, the sneaky little devil! We'll see.
To all who have had few SE's on this drug, thanks for staying around as our newer friends need to know that on this journey all is not equal.
Phyllis
0 -
What part of Fl are you in?
0 -
Spookiesmon, I'm in The Villages. Probably about 2 hours? east of you.
0 -
North of me. Never been there, I've heard it's very nice, active place.
0 -
Patoo, I have a HS classmate who lives in the Villages! Neat! And thank you for reinforcing that not all have problems with Arimidex. I think I would agree with you about going off it. I thought that the latest thinking was going 10 years on the AIs. Hard to change docs, isn't it?
HUGS!
0 -
Interestingly I'm happy about the move and need to change docs. Was not entirely thrilled with my NJ docs but since I was doing well had no reason to change them. This new guy is very up-to-date on current happenings and though he's an endocrinologist appears to know more than my NJ MO. Unfortunately I'm very easy to please and so not good at self-advocating about my med providers so need to feel comfortable with them. He's top-notch and came highly recommended from two sources.
The Villages is a 55+, very active, community and everyone is from somewhere else. First question you get is "where are you from" because no-one is from Florida. People are sooooooooooooooooooo friendly. Anyone interested to just view try here: http://www.thevillages.com/lifestyle/lifestyle.htm
0 -
My original MO (before Humana kicked his practice out of network) told me 10 years. I can deal with the se's I've got. Something new is going on. Not falling asleep for hours. Only getting a few, then 2 naps. Not sure if it's AI, or something else. Planning on a few-up to a week off to see what's going on.
0 -
Phyllis, Can't you stay on Arimidex if you want to? I hope to stay on it 10 years, but never really discussed it, since I just started on it about 7 weeks ago. I live in Bonita Springs and have thought about moving to the Vilages. Did you know anyone there when you moved from N.J.? Do you not have an MO there? Why are you going to an endocrinologist? I would not want someone telling me that I could not take a medication that has been proven I need.
0 -
mysunshine48, I'm sure I can stay on it if I insist. He was just wondering because the studies have not shown yet that more than 5 years are of any benefit. How far is Bonita Springs? I have a friend who moved here from NJ last year but I had visited 5 years ago and just retired so moved on down. My sister will be here with me the end of next month. Believe me, you don't have to know anyone here because you will make friends everywhere you go. People are super friendly and willing to answer questions and give advice. It's an amazing place.
The practice I've selected under my insurance (also Humana) has a MO who I will give a try. I'm easy to please but have no problem changing doctors if necessary. This PCP is listed as Internal Medicine under Humana but is an endocrinologist. I was also diagnosed last year with Type 2 Diabetes and an endocrinologist deals with issues with the blood so he falls right into place. In NJ my PCP was managing my Diabetes but I would rather work with an endocrinologist for it. He will not be primary for my BC but I felt comfortable discussing it with him. Thanks for showing concern.
0 -
It's not necessarily a matter of "can't" take it. There is research news coming out now leaning towards 10 years being more beneficial. Not all docs are absolutely current on everything. My current MO says 5 years.
0 -
And, I will definitely take info with me when appt is setup with MO (if you have any links to study please post). I don't have a problem staying on it for another 3 years as SE's are minimal, might not even be AI related (think, aging) and my co-pay for 90 day supply is like $14.00!
0 -
Hey, all! Thanks for all the help and comments about my rapid heartbeat. I think it must have been dehydration, since it has gone away after I lay about all Sunday. I'll talk to my MO about it, since I'll see him Tuesday. I've got a Herceptin infusion then. So, yes, heart-related things could very well be due to that rather than Arimidex. I had a MUGU before I started chemo, but haven't had one since. I did have a bunch of ekgs before the LX and an echo during chemo because I was hospitalized due to dehydration... but they haven't found anything. And, I've had palpitations years and years ago, also nothing found... Nothing is OK with me.
Of course, NOW I'm feeling fatigue! I didn't feel any during RT. On the other hand, it's nothing terribly unusual for me (I actually went on anti-depressants before all this started because I was feeling fatigue... they didn't help). I usually don't get affected by drugs, so I'm hoping this is just my normal, or my body still recovering from everything. Hard to say at this point. (My poor toenails are still recovering from chemo, and I still get stomach upsets... so I know not everything is back to normal.) And I've got other stuff going on, like Type 2 diabetes, hbp, slightly high cholesterol, thyroid nodules (although thyroid tests normal--but I suspect that thyroid still might be causing the fatigue), and who knows what! Sucks getting old! Oh, and I've been feeling stiffer, lately than I did all through treatment... but it's funny... there were a lot of things that went away during treatment--bunch of new symptoms replaced it all, but for some reason I wasn't feeling arthritic at all during chemo and rt, but I was a bit before, and now it's coming back again. Weird.
So the SEs I'm having might just very well be due to other things. I'll wait and see, and consult my MO... But nothing terrible so far. Not happy with the fatigue, of course, and the rapid hp was kind of scary, but so far it's something I can deal with.
0 -
Aw, April, HUGS!!! Think you need a bunch of them.
HUG HUG HUG!
0 -
My oncologist said 10 years. So far my SE are very do able. Some bone pain bUT that seems to have subsided the last few days.
0 -
patoo your MO may want you on it for several reasons. It could be ILC can be sneaky, family history, weight issue etc. I would ask. I know the studies are looking at 10 years but for some that are considered high risk (I am due to tumor size) they are already saying 10 years.
0 -
Peggy. I believe the recommendationis 10 for Tamoxifen and 5 for the A's but things change all the time!
0 -
Dtad, i think my MO is leaning towards 10 years. And iirc some switch you out to Tamoxifen for awhile. Every doc is different.
Hugs!
0 -
I saw my MO this week (just a check-up) and asked about 5 years vs. 10 years on Arimidex. I have been on it a year and almost 4 months. I was not surprised at his reply. "There are articles and studies arguing both sides. When you get close to the 5 year mark, we will see what the prevailing wisdom is then."
0 -
So, my question is: What happens when you stop taking it? Especially if your body still has some estrogen lurking around! I think I would want to stay on it as long as possible if it helps! Another question, I have said that I did not think I had any side effects (been on it for 7 weeks), however this past week, every day, my back is really hurting. I have to lay flat for at least an hour for relief. Could THIS be a side effect? I did nothing to cause this.
0 -
April, I hear you about the fatigue. Sometimes I think something is wrong with me because I am almost 10 weeks post final chemo treatment and still get so tired after doing a few things. Going grocery shopping and a few errands are cause for a 2 hour rest in my recliner. I guess everyone is different. I have heard it takes months to get energy and stamina back. Ohhhhhh By the way, is fatigue/tiredness a side effect of Arimidex?
0 -
My oncologist and the nurses both said at least 6 months for all my energy to return after my 4 rounds. I feel good, just tired sometimes. I taught 5 days this week, I am going to cut back to 4 for the next month. I was so exhausted that I slept hours and didn't even wake up to go to the bathroom.
0 -
lago, staying on for at least 7-1/2 yrs was the thought of my former MO. My new PCP was wondering why as there is no final decision/word on the benefits of continuing beyond 5. He thinks that following the blood work and mammos should give them sufficient info about recurrence. Of course, since he is an endocrinologist, blood is his specialty. We only spoke about it in general and he was not saying to quit. I have not yet met with my new MO so don't know what she will recommend but she will have to give me very convincing data to support going off since I am ILC. I would love to stop only because I'm tired of taking the little pill but since I have no major SE's it won't be a problem to continue.
mysunshine48, I don't think anyone has ever been able to answer the 'what happens when you stop' question. I also wonder, does your body start making it again after going off the pill? If so, what happens to your risk then? There just may not be an answer at all.
0 -
Both my doctors (one moved away) were firm on the 5 years for me. The studies do not support going beyond that yet. (A friend whose doctor also pulled the plug after 5 years for her commented that if there was some startling gain to staying on longer, it would have been leaked by now). Also, Als are serious drugs & taking them for a long time has risks of its own. Of course, everyone is different, everyone's risk of recurrence is different & what may be right for me may very well not make any sense what-so-ever for the next person!!! I didn't have terrible problems being on it for five years, and now have been off for three. This is what I have found has happened to me: I feel like I have more energy and less creakiness. My cholesterol (which was slightly up) is back to where I started, my bone density (which was still in the normal range but dropping) has actually gone back up. As far as estrogen, as we age our estrogen level keeps dropping, so I hope that being 5 years older has taken care of most of that (I was only mildly estrogen positive to begin with, so maybe that is another reason why I feel good about my decision). It is scary when you go off, but it is kind of wonderful too....liberating in a way.
0 -
My MO suggested that when I stop I will want my BMI less so there will be less estrogen factories.
0 -
That is another reason that I try to keep my weight down and exercise like crazy!
0
