Arimidex - Coping with the SE's
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Howdy-do to All,
I took my first Arimidex this morning. The pill looked so tiny and innocuous...Hope it stays that way, but one thing that I have noticed already is that I am extremely thirsty.
paamboli
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paamboli - I have been on Arimidex a little over three months and I am always thirsty too. Does anyone know if that is a side effect?
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NatureGrrl-eggs, chocolate, shellfish, peanuts and latex are inert substances but many people have severe reactions to them. Arimidex (brand name) has in addition to anastrozole has lactose (anyone out there lactose intolerant?), magnesium stearate, hydroxypropylmethylcellulose, polyethylene glycol, povidone (a form of iodine), sodium starch glycolate and titanium dioxide (makes the little pills bright white). And you make a very good point about people experimenting with penicillin-there is a medical procedure that can test a person for allergy to penicillin itself or the earlier used chemical, but that is done in a hospital setting with emergency equipment as penicillin, like any antibiotic, can be a powerful allergen. I hope no one thought I was suggesting that penicillin isn't an allergen, it certainly is-it's the only drug my mother is allergic to!
Paamboli & don23-Dry mouth/increased thirst isn't a listed SE of Arimidex, but that doesn't mean it can't be causing it!
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My "great" canadian pharmacy, just sent me a 90 day supply of brand name arimidex from astra zeneca, made in canada, which had blackish discolorations on the aluminum. I had to send it back. Now they tell me that they do not have any other arimidex from any other lot but for that discolored lot.
Anyone have a different canadian pharmacy that they trust and like? I like these people very much and they've done a great job for me up til now.....their pharmacy (bricks and mortar) insists the lot# med is fine. How they could possibly know that?........
At any rate, stuck up a creek with no canadian pharmacy to use....anyone have anybody they trust and like? I'm using the non generic arimidex, 1/2 $ in Canada.
thanks all.
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Native Mainer-
Perhaps my mind is playing the fool, but doesn't polyethylene glycol= anti-freeze, which is poisonous? If I am not mistaken, what is this deadly stuff doing in my pill?
paamboli
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Good morning A Team, hope the change in the weather chases any and all SEs off the planet. Juli, you mentioned migraines before and again said they are daily! You poor thing, I just can't fathom enduring that every day, my goodness! Is there no relief for you with this? IMHO I think you should get 4, 5, 10 opinions, this is just not acceptable! Many years ago my boyfriend was told he had bladder cancer and needed surgery immediately. He pursued no less than 5 opinions until the last doctor told him it was not cancer. No one could tell me that dry mouth and thirst are not SEs. Although not pleasant, relatively easy for me to tolerate by drinking, which of course is a good thing and quite often keeping a sugar-free candy in my mouth. Btw, the candy should also be color -free as it will show up on the teeth. My best wishes to you all. Julia0
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Paamboli-you're right, polyethalene glycol (aka PEG) IS used in antifreezes and lubricants, but it's toxic to dogs, not people. PEG is used in almost all laxative medications includingn GoLYTELY (used for colonoscopy preps), MiraLAX, can be found in certain preparations of Neulasta, toothpaste, gum. In rat studies PEG protects from cancers caused by chemical exposure and heals spinal cord injuries in guinea pigs. Oh, and PEG is the primary inactive ingredient in Paint Ball paint.
Juli-I agree with Julia257, suffering with daily migraines is NOT OK. Ask for a referral to a pain management clinic. Even if you have to travel it would be worth the effort. Pain Management specialists, usually anesthesiologists, don't try to "cure" the cause of the pain but treat the pain as if it was a problem all it's own. After someone has had pain for 3 months there are physical changes in the brain and nervous system, so the things that work for acute pain don't work well for chronic (present more than 3 months) pain. I used to get migraines and could not function-how do you manage with daily migraines?? You must be one strong woman!
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Oops.
The component of antifreeze that's toxic is "ethylene glycol", not "polyethylene glycol" ... and ethylene glycol is highly toxic to everybody, not just dogs. Wikipedia isn't the most reliable source of scientific & medical info, but it is convenient. Here's what they say: http://en.wikipedia.org/wiki/Ethylene_glycol and http://en.wikipedia.org/wiki/Ethylene_glycol_poisoning.
Note that it takes a lot more ethylene glycol to make a human sick, than could possibly be contained in a tiny Arimidex pill.
But, there is NO ethylene glycol in our Arimidex pills. They contain "polyethylene glycol" (PEG), as has been stated in previous posts. PEG is not the same thing as ethylene glycol. PEG is not toxic, at least not in the quantities and ways it is being used -- not for dogs or people. PEG is found in an amazing variety of products that are consumed or used by people, as NativeMainer has pointed out. http://en.wikipedia.org/wiki/Polyethylene_glycol
otter
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Julie,
Somehow I missed your original post about daily migraines but since I'm a long time sufferer of migraines - sometimes daily - I may be able to help.
First off, see an ENT doc. There may be an infection. When I was getting them several times daily and had no QOL, I went, he scoped me and saw the inflammation, put me on steroids (something I was loathe to do but, for the short term decided to give it a go) and things got way better quickly.
Next, in the interim, I kept a pitcher of strong, cold ice coffee (w/ milk and sugar added) in the refrigerator. When I could feel a migraine coming on, I'd drink a large glass of ice coffee along with an Excedrin for Migraines pill. The caffeine helps expand blood vessels. Also, I found that it made a huge difference taking something early rather than after it was a full blown migraine.
Third, increasing my Vitamin D3 and adding CoQ10 (400/mg daily) has also significantly reduced the frequency of my migraines.
And finally, when I first started A, I took my pill at night and would wake up with headaches which got worse through out the day. After one bad migraine where I was actually vomitting (pleasant, isn't it ?), I switched to taking my pill in the am, and the A headaches stopped.
Hope this helps
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Hi Ladies,
I'm so ridiculously frustrated by the episodic fatigue I'm dealing with at least twice a day. My onc can't figure it out. My BP was normal the last time I took it when one of those fatigue episodes hit. I called the cancer center pharmacist and he doesn't think it's related to the medications with the possible exception of the BP meds I'm taking. I lowered the neurontin, but it had no effect on the fatigue. I have an appt. with the cardiologist in two weeks and maybe he can figure it out. I get so tired it feels like an effort to breath or talk. I have all I can do to stay awake - even when someone is talking with me. It happens every day morning and afternoon. I've been eating protein, drinking water, taking supplements, trying to get some exercise in, and working my job and caring for my elderly mom on my days off. I'm just pooped and I'm really getting discouraged about it. Maybe I should contact my PCP to get my B levels checked. What do you think? Sorry to rant, but I'm so frustrated! Thanks for listening.
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Rocket, one of the biggest side effects of BP meds IS fatigue.....until you kind of get used to taking the meds. How long have you been on BP meds? If they are newly prescribed, they may be the culprit.
You also seem to have a lot on your plate...working and caring for your Mom.....I get tired just thinking of all that you're doing. I do get tired sometimes for no apparent reason, but I am 63. I find that if I have a cup of tea and throw a little sugar in it, it perks me up.
You are wise to speak to your docs....I hope they figure it out for you. Best, Sue
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Thanks Sue. I have been on HCTZ for over 20 years. I began taking a low dose of Metoprolol twice daily for a heart condition that causes tachycardia. I don't have high BP and never have. I didn't start experiencing the fatigue attacks until I was 19 weeks PFC. It started about two weeks after my hysterectomy. It's the weirdest fatigue I have ever experienced. It comes on very suddenly and goes away after about an hour and a half each time. I need the docs to figure it out. They probably think I'm nuts.
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Sunflowers - well I'm willing to try anything at this point. I do drink water at my desk, but maybe I need to eat a snack. I'll try it and see if it works. Thanks for the suggestion.
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Rocket--metoprolol is in a class called beta blockers, good for lower blood presure and slowing the heart rate and notorious for causing fatigue. Your pattern of fatige is a bit unusual, I'll admit. For reasons no one understands beta blocker side effects can appear or get worse when another medicaiton, even if unrelated to blood pressure or heart rate, is added. If you started taking Arimidex recently, that could be the trigger. A cardiologist should be able to sort that out for you, and I hope it happens quickly!
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Rocket,
I am not on all of the meds that you are, but after going thru a lumpectomy and radiation with no unusual fatigue, it finally hit me about one month after starting Arimidex. My onc thought it was "just from everything you have been through", but I am certain it is from the A for 2 reasons. 1) It still exists 9 months later, and because I have seen so many posts from others complaining about fatigue from their CA meds. Even though your episodes seem a bit unusual, I agree with NativeMainer, that one med could trigger a reaction from another med.
My Best to you in figuring all of this out !!
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Kind of like when you sign a teaching contract and it says, "Other duties as to be assigned."
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Rocket, I emphasize. While my reaction wasn't as strong as yours, I had more than a few months where I came home (from working part-time) and conked out on the bed for a few hours -- I really couldn't stay awake. Slept 10 hour nights, too. It was discouraging, to say the least. It did let up but it took time.
Your body is recovering from 2 major surgeries (and general anesthesia, I'm assuming -- which can also be very hard on the body) and your body/soul/mind are all recovering from major trauma on many levels... all in the last 10 months. I cared for my mom, too, and that's a huge drain, even when you don't have anything else to deal with. Add your job -- and your plate isn't full, it's overflowing and filling up the floor. Your fatigue is beyond what I experienced and I'm glad you're pursuing it... hope you get some answers soon!
FWIW, sometimes I talk with my pharmacist about drug interactions, because although all my drs. have my drug list and pay attention to it, my pharmacist is the one who sees them all together on a regular basis, and it's his job to know drugs. He's a wealth of information.
I don't have any suggestions beyond what's been mentioned (although I'd make sure there are some complex carbs in your snack -- energy source) except checking your thyroid, which I'm guessing you've already done, but just throwing it in there just in case.
Best of luck!
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Sorry, I haven't been online in a bit. To address everyone who commented on my daily migraines, I thank you, but no one realizes what I've already gone thru. I won't get into it all, it's WAY too time-consuming, but yes, it's daily migraines, I'm totally retired/disabled due to them with the vomiting. I have already been to various head pain specialists/clinics/headache specialists in the country, stayed a month in Michigan's Head Pain Unit in 2004. I have had chronic daily migraines since age 17. There is no preventing them, we only treat the pain daily with vascular constrictors, pain relievers/narcotics do not work. No, it's not an infection, that would be 35+ years of an infection~!
THANK YOU for your concern everybody, I'm sorry I wasn't clear in my health issues, but believe-you-me, we have tried all that we can, right now I'm just grateful to get thru each and every day with a level '5' on pain scale. That is 'normal' for me, unacceptable? Maybe to those of you who don't experience this on a daily basis. It's my norm.Thank you again, no worries, I keep up with my own health issues, one HAS to, no choice! ~juli
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Just to reiterate also, to all who did respond on their migraines as well, whatever works for you is what's best~! EVERYone is so very different. It's why I say there will never be a cure per se for migraines, nor even BC (my OWN opinion), as EVERY-one has varying degrees of disease, and various responses to medications. Most meds (98%) of them increase my head pain, any that are supposed to make one sleepy--make me hyper; hospitals have a devil of a time putting me under for general anesthesia, I just don't go under, I get super-duper-hyper! ALL of us have very different body systems. We ALL respond extremely differently to meds. Protocol at the head pain clinic I went to for a month for the meds they used, I could not use ANY of them, they actually learned alot from ME...the other 24 patients? NO help for them either during their stay.
That's NOT to be pessimistic, I've adapted, one HAS to, there really is no choice. I've been married, brought up 2 extremely bright, well-adapted adults, got divorced, met my bf, who finally convinced me along with my team of docs to finally get a break and become disabled at age 46.
Also NOT to be pessimistic about our bc treatments either. We can only hope that they help us, do what we can to be proactive, and just LIVE life the best we can~! ALL my best to everyone, always. ~juli
**I have learned SO-SO-SO much on this forum, thank you all**
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Dear Sunflowers and other friends,
Please be careful with the protein bars you eat. Practically all of them are made with Soy that can affect estrogen levels. I know there are "good" forms of soy... but even my old school onc. told me to stay away from it altogether with estrogen pos cancer.
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Sunflowers,
So very interesting and yet not surprising to me. What is surprising to me is that my onc seemed oblivious to this. She also has told me that soy is okay. My husband wanted me to to stop eating soy when I got my DX (which I did), and the onc said it was okay.
As per our previous posts, I had no idea that flax was in the no no arena, even though it is a listed supplement on all of my lists. No Dr. ever told me that I should not take it. This has all made me decide to find a new onc. Even though I know that there are many opinions out there, I have come to mistrust the info I am currently receiving.
Thanks
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You really have to be your own researcher and advocate no matter how much you trust your medical team. It is really pretty scary; and why, I suppose, they call it 'practicing medicine'!
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Ruthbru,
I agree with you. A funny thing happened to me though when I got BC. I wasn't the usual self advocating person that I normally am, and it has taken me a whole year+ to get there. It has been really scary for me to see how many many differences of opinions there are both between the Dr.'s and all of us patients.
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I think some of it is that specialists just see one aspect of you, not the whole person. That is why I have kept my family physican (whom I've gone to for a long time, who knows ME, and whom I trust) in the loop. Also, doctors are more likely to 'just' know medical 'stuff'.....not some of the things like how diet, exercise, suppliments etc. can play into the mix. PLUS, some of it is just opinion without proof to back it up, or something that was 'fact' turns out to be wrong after further research, or something works for one person but not the next and nobody knows why......yikes, I'll quit now as I am depressing myself!!!
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Juli, I heard on the news this morning that the FDA has approved of a prescription dose of Botox for those suffering with migraines at least 15 times a month, they would get an injection every 12 weeks. What do you think? Wouldn't it be wonderful if this worked for you and as a bonus made you look 10 years younger! Fingers crossed. Julia
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I know someone who gets Botox for headaches (not sure if they are migraines) and it does work for her.
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Juli,
I heard the same as Julia...sounded quite successful. Hope you can find someone to help you. Nobody should have to go through what you have to go through. Know we are all praying you will find relief soon.
Teri Catch my hug.
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EEEK!! Day 5 on Arimidex, and last night I fell asleep while watching the 6 P.M. news; lights, heat, and TeeVee still on when I woke up at 9:30. Back to sleep and woke up again at 2, then back to sleep and woke up again at 3:30, and then finally got up at my usual time of 6 and made coffee. This nonesense, combined with a gut that is not working properly is a bit crazy-making.
paamboli
Diagnosis: 8/18/10 IDC, 1.1cm., 0/2 nodes, ER+/PR+HER2-
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I asked the first onc I saw whether there were different doses of Arimidex and she said no. I don't understand that - with different body types, weight, age, etc., seems to me that should make a difference in how much is prescribed.
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Does your oncologist check estrogen blood levels to determine whether Arimidex (or any other aromatase inhibitor) is working for you? Mine does not, and I can't remember why he doesn't. Wouldn't you want to know, so you could switch to a different AI if need be?
So confudes.
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