For Arimidex (Anastrozole) users, new, past, and ongoing
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In March of 2012 I was diagnosed with infiltrating ductal carcinoma and had a partial mastectomy. After chemo, in Oct of 2012 I started Letrozole. Six months later in April my back and side were so much pain I was switched to Anastrozole. Same thing. In Sept I took myself off and in November my oncologist put me on Exemestane. Side back pain and hip pooling into the ovary area, I decided no more and as of April 1 I'm off all of it. Last week I had a CT scan, bone imaging, and chest x ray. I'm now waiting for the results and will see my oncologist first week of May. I've had these tests before and all came back nagative. I never had this pain till I began taking the five year pills and it is frustrating beyond belief!! How long does this stuff stay in your system anyway?? My oncologist says it's gone since I have not had a pill in a month, but then why am I still feeling the same pain?? Oh yes, frustrating!
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pattyiniowa I started Anastrozole March 1, 2010. I started my 1 month break over a week ago on April 20th. In about 3 days my back pain and shoulder pain was almost gone. I can stand up straight without pain. You may have some other issue.
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My cholesterol has been going up. I had a blood test in November and just had another blood test. My cholesterol had gone up again. My doctor said she wants me to watch my oil intake (very low) and exercise or she would suggest taking medicine. Overall it is 224 but my good cholesterol was high. I think I remember reading something about Arimidex causing this problem. Does anyone know anything about this? I don't want to take another medicine that may have side effects. I still have 3 1/2 years to take Arimidex.
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ClaudiaMetz, yes elevated cholesterol is one of the SE's of Arimidex. Mine is up to about 210. I'm not worrying about it since it's from the AI but I am exercising more than I did before and watching what I eat.
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I'm on Aromasin (a former anastrazole gal) and my cholesterol jumped to 204. I'm not worried because my HDL is really high. If that dropped back into the normal range, I won't seem have a problem, but why would I want HDL to just be normal. So you need to analyze your numbers. I think the way this is figured should be changed.
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Hey ladies...
Just snooping around the site and found this thread....so glad I did....Hope you don't mind if I join in...
Been on generic Arimidex since February 2011...first few months felt yuck and pretty much okay until a few months ago...feet hurting, muscles sore, BP going up and all around feeling like I have the "blues"...
I'm not a complainer by any means, and actually probably something I can just put up with if I have to, knowing that this part is helping to keep the beast away... But, I'm glad to know that it's just not me and I can talk to some others about it and hear options, suggestions and advice...
I certainly have seen more and more weight creep on (even more than when I was on chemo), so I know that probably adds to me feeling "yuck" as well...
Weather has been so pretty and I still find myself inside and on the couch instead of getting out more and doing something...
At least I get out and walk the dogs 3-4 times a day (about 10-15 minutes each time), but a very slow pace....
Hoping to get inspired by many of you that are doing well and getting past the "yucks"...
Thanks!
Tori
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Hello Patty in Iowa - I'm too new on Anastrozole to have any answers but am also in Iowa. Saying high from Mt Pleasant.
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Can anyone give me a report or medical site that I can show my doctor that Arimidex can cause cholesterol to go up. I am slim (always have been), I really don't eat bad but need to exercise again. When my mother became sick and then died I stopped with my exercise program (not a big fan of exercise). I hadn't really thought about Arimidex causing anxiety or depression but mine has gotten worse. I do take something but don't want something that I have to take all the time and have trouble going off of. I have an adult son who is married and due to major back issues isn't able to work. His wife's employer took spouses off of family insurance. The had to get health insurance for him (really didn't have the money to do it but you have to have it). He has had 2 of his prescriptions denied by the insurance. Since he was a kid he has been taking adderall (diagnosed as a kid and believe me he has ADD). Now they said "your insurance won't pay for that". I know he is 36 and married but it really causes me stress. They have low income and now how many more things is he going to be told his insurance won't pay for? I have pretty good insurance for medicine. I know some of your ladies have run into problems with prescriptions being too high. Any legitimate sites to go to to get his adderall at a lower rate. He uses Walgreens. Sorry for so many questions. Stressing and trying to calm down.
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ClaudiaMetz I price shop all the time. Costco is usually the least expensive followed by Walmart then Target. Sometimes I find CVS can be cheaper than Walgreens but not by much. Also check out: goodrx.com (they even have an ap for some of the smart phones)
Some pharmacies will give you a price some won't. The Closest CVS told me I would have to bring in the prescription to get a price. I didn't want to transfer my script until I knew for sure it was cheaper. So I tried another CVS. They did it for me so I get my meds from them even though they are a little farther away. Walgreens also won't check the price unless you bring in the script or the bottle.
Why did the insurance refuse? Some always say no on the first try. Did his MD petition? Is is just the plan he's on?
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My niece is married to a doctor and she says to appeal any refusal for a drug payment. Call the insurance company directly and tell them you want the appeal process information. You may already have it if you kept any of your insurance papers. Your pharmacy may also have some information to help. It's slow but better than nothing and may help you in the long run. Nothing to lose! She says in some cases they will approve if they know you are appeal or if you meet their income requirements.
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My son just got this insurance the first of April due to the fact his wife's work dropped all spouses. It may just be it takes a pre-authorization. I did look at goodrx.com but didn't know too much about them. They are just on such a limited budget and I am trying to do some of the ground work for them. I don't know why they did it. He makes sure he does everything the doctors tell him to do and because of the meds he is on he knows he can be tested at any time. I have never used Costco. Will they tell you what a medication costs without insurance? By the way ladies, thanks for yur help.
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ClaudiaMetz Yes Costco will tell you the price of the meds without insurance. The first year on Anastrozole I was buying at Costco not using my insurance because it was a lot cheaper. I had to meet my high deductible before they would cover. It was 1/2 the price. GoodRX is just a search engine that will estimate you how much the drug will cost at any give place. You need to enter the information ( location, drug, amount) and it will show you several places and the cost.
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So my MO's NP just got back to me. She wants to talk about putting me on Tamoxifen. Not sure I want to do this. I was more afraid of Tamoxifen than Anastrozole. I don't understand how this is going to be better for my emotional status. Maybe good for my stiffness. Guess I need to chat with some folks who have been on both. I will be talking to her tomorrow.
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lagp...a few years back, I went to my MO complaining of leg pain (I was 18 month into Femars). I assume my pain was dieto the Femara. They said not, but we discussed the option Tamoxifin. They were totally against me going onto to the T med as they said it had nastier side effects. Turned out my problem was due to a statin I had changed to at the same time I started the femara.
Dang if the pain did not go away (over night~~) when I changed statins.
I ended up making it through my 5 years with Aromasin....dang if 4 months later I still have the same aches so do ensure not the blame the dang PILL
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proudtospin Yeah I am surprised she is talking about Tamoxifen. I want to be sure she has discussed this with my MO. I'm pretty sure she had because it took her 2 days to get back to me. She usually responds in 2-12 hours. My issues with my back, shoulder, depressed mood and osteoporosis is definitely from Anastrozole. I stopped the drug a week ago Sunday. Within days my mood went back to normal, no back pain and only a very little shoulder soreness. I have only 2 years left but I can't be in that much back pain and depressed for 2 years. I mean it actually has slowly increased. I can't even imagine what I would be like in a year.
My MO's NP threaten tamox a few years ago when I was concerned about my bones (6 months before osteoporosis diagnosis). I need to understand why straight to tamox and not one of the other AIs.
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A post-menopausal friend of mine went into her BC diagnosis with severe osteoporosis already. Her doctor, which input from an endocrinologist, put her on Tamoxifen right from the start. With any other Al you will still have the bone issues, so Tamox is worth thinking about anyway.
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tough choice for all of us....best deal to me is to find docs that work with you
for me, if it all comes back, it is mastectomy time and this is something my docs and I discussed so hoping it never happens
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lago - I had a horrible run with Femara and Arimidex. I am now on Tamoxifen, with very few/minor side effects. I am so glad I made the switch. Definitely worth considering!
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Ruth when I was first diagnosed with osteoporosis back in the early fall no one talked of switching then.
BayouBabe what SE did you have with Anastrozole?
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I was only on Arimidex for three weeks before I flat out refused to swallow another pill! I instantly began developing severe bone and joint pain everywhere, which part of quickly turned into de Quervain's in my left hand (I am still in PT months later for this. Ugh!). I had immense fatigue, sleeplessness, brain fog - major walking idiot. I also felt depressed, but unsure if it was real depression or just a feeling of helplessness from feeling so horrible so very quickly.
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Well my main concern is the depression. Not that I want the back pain, shoulder pain and stiffness back but I was handling that better than the depression. I was so doom and gloom. It's so weird now that I am my normal self. I realize how bad I was. Probably good that I stopped when I did. But I was on Anastrozole over 3 years. So that's what's so confusing.
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These meds are nothing but confusing. No rhyme or reason to the agony they cause! Wishing you luck lago as you seek a solution. I just know I was ready to throw in the towel after two bad runs. I am so glad that I gave it one more go with the Tamoxifen. Many doctors do a three year run on an AI, followed or preceded by two years of Tamoxifen.
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My friend had already broken bones due to her osteoporosis, so when the oncologist suggested Arimidex, she INSISTED that an endocrinologist be added to the team. He was the one who made the Tamox call. She has not had any problems with it so far (3 years in).
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Being on Arimidex, I was told about the thinning bone possibility. Border line with bone density. There is always so many side effects with meds. I have been on Arimidex a little over a year. I have such a busy life and I am tired all the time. My anxiety and depression aren't good. I guess I never gave it any thought it could be the med. It is time to go see my oncologist. My problem is every time I ask a doctor something I usually get "ask your doctor". I told my husband "what doctor?". Just went on Medicare with Cigna as my secondary. Due to the lump left from the internal radiation which filled with fluid and it is hurting I asked my PCP about it. She suggested some tests and now my secondary insurance wants a whole list of questions answered. She suggested breast MRI. I have to make sure Medicare and secondary are going to pay the bulk since they aren't cheap.
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ClaudiaMetz if insurance won't pay (after you protest a few times) also see if they will charge you less because you will be paying out of pocket. Usually they will but you need to tell them up front.
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Oh happy dance time!! Just saw doc, I get a month vacation from the pill, and a script for brand name for $40!!!!
Yippee.
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Just wondering about the fatigue but I also see a neurologist, had one seizure years ago, so I get a checkup every year and he runs different tests, or so it seems. Anyway, it seems that for years my low energy has been due to a significant low Vitamin B. I took daily B12 injections in addition to B12 supplements, special vitamins, 4 in all. Now I take one shot weekly for a month, then one every month I guess forever. I'm hoping this will help with the Arimidex (insurance & doctor still arguing so may be starting generic soon). Any thoughts?
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BayouBabe - love, love, love the 'walking idiot' description of brain fog. Sometimes that is EXACTLY how I feel. I joke about it but it really is aggravating, annoying and I'm not just a little worried about how stupid I'll be by the time I'm done with this drug.
Lago - I hope, hope, hope you'll be able to continue with the AI and are able to find an acceptable resolution to the depression SE that popped up. ((((hugs)))) AT least with aches and pains you can use pain relievers with little to no additional SEs. Depression is a m****r-f****r to deal with. Please forgive my language - not very well disguised - but sometimes there are no better words for something.
Love to all
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I just spoke with my NP. She called early. I told her I wasn't too excited about Tamoxifen. She claims there is less bone pain with Tamoxifen. I told her my concern was the depression… granted it would be nice to not have the back/shoulder pain but the depression was at an unacceptable level. She said the depression isn't a typical SE but given that I went of the drug and have recovered 100% she knows that it's very real. (not sure WTF she is talking about because it is posted as an SE on Astrazeneca's site ).
Also expressed some concern about being HER2+ not metabolizing it as well. She has not heard about that but again with talk to my MO… and of course the Uterine cancer risk.
I asked what benefit I got from the 3 years. She told me that 5 years was an arbitrary number that they studied so they don't know about 3 years. (That's what happens when the Rx companies run/pay for the studies. They don't want to know if we can do it for less. They just study if we can take it for longer. They don't make money from us taking it for less time.)
So she is going to talk to my MO about Exemestane (Aromasin). Her concern is the SE will be the same especially the back/shoulder pain and other stiffness but she does agree that sometimes folks do better on it. She also said they can send me to someone to treat the depression on the drug. I am not on board with that. I don't need another doctor nor do I need a med messing with my mind when we know what's messing it up in the first place. Another drug most likely will me another SE. This is getting ridiculous already.
What ever happens I don't want to leave this thread. I like you guys
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Once you are on the A Team, you are always on the A Team!!!
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We like you too!
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