For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
Miminiemi I have LE and yes heat, repetitive motion will set it off. Heat is the worst for me but I do have my LE under control. I wear my sleeve daily. You may need to see an LE PT to get the swelling down and move the fluid out. Don't wait too long. You don't want your arm to stay swelled. If it stays swelled for too long you will damage the tissue and it will not be able to go down. I have a little bit of that.
BosumBlues if he won't give you a script for sleeves ask your MO or your PCP. I might stop seeing my LE MD because its under control. I haven't needed PT in years. My PCP said she could write me the script if I need it. Granted I've been buying mine without insurance because it's cheaper for me now but you do need to be measured properly. Bad fitting sleeve can make it worse.
0 -
Bosum, do you have lymphedema?
0 -
There is quite a bit of controversy as to whether or not someone without LE should wear a sleeve during air travel because if it is done wrong, you could actually cause something bad to happen. What I do know is, if you do wear one, you absolutely need to get it fitted professionally & you MUST wear a gauntlet with it....otherwise it is like putting on a tourniquet! I don't have LE and do not wear a sleeve when flying. The precautions I take are: wear loose fitting clothes, no rings, tight bracelets etc. on that hand, I get really hydrated before I get on & drink whatever they offer while in the air. I move my arm around a lot, squeeze my fist into a ball etc., make sure I get up and move around the cabin (which I have to do anyway since I need to go to the bathroom after drinking all that water!). My poor seatmates! So far this has worked for me (knocking on wood as I type because I am flying someplace on Saturday).
0 -
I have also noticed sensitivity to heat. I can no longer take a steaming hot shower or wash dishes in super hot water. When I was grilling out yesterday, I could barely flip the burgers because of the heat from the grill. I never had that problem before!
Laurie2025, I am on the mega dose of vitamin D once a week as well. My level was 6.4! My MO told me to try to get 15 minutes of afternoon sun daily (weather permitting). Because of this, I have discovered, the freckles of my youth have returned with a vengeance. They are so much bigger than I remember! Could this be the Anastrozole or just aging (I just turned 53).
Also, my feet are always hot; like they are on fire. They are even hot to the touch. Most nights I have to sleep with my feet sticking out from under the covers! Does anyone else have this SE?
On a side note: I visited my sister a couple of weekends ago and she had an open house of around 30-35 guests. I had not met any of the guests before but found out 4 of us have had breast cancer. That's over 10%!! Scary!!
0 -
ruthbru I was fitted but I can wear a sleeve off the shelf. My LE MD says I don't need to wear the glove or guantlet even when flying because my fingers don't swell. I trust him since he's one of the founders and president of LANA.
But wearing sleeves is controversial. Some say yes some say no. I wear on both arms. I find my at risk arm feels a bit heavy when I don't. At one time I thought I had a stage 0 in that arm but stage 0 can be corrected so maybe.
0 -
BosumBlues with 1 node probably not but it's not 100%. Some people do wear sleeves as a preventative but it's controversial.
0 -
This is just my observation but after seeing ladies who do everything absolutely right and still develop LE, and seeing ladies who do everything wrong and never do....I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad ‘luck'. That being said, of course, everyone should take common sense precautions (such as using sunscreen, wearing gardening gloves, no needles or IVs in the affected arm etc.).
0 -
Just wanted to share an experience here: I did wear a compression sleeve preventatively when I flew--no swelling in my arm at all back then, just in my chest. I too was told I didn't need to wear any hand protection. My hand blew up like a sausage on that flight, so that's definitely something that can happen. And when it does, getting it out of your hand is really hard (not to mention that it wrecks your trip!) Here's what the leading LE doc in the country has to say about using hand protection when you're wearing a sleeve:
http://www.lymphedivas.com/handprotection.asp
lago, if you develop hand LE while flying, it'll be YOUR hand, not your doctor's. Especially since you can use off-the-shelf garments, why take a chance? I wouldn't wish hand LE on anyone!
For all of you who are trying to figure out what to do when flying, here's information about the "should I wear compression while flying?" controversy, so you can understand what the issues are and make your own informed decision:
http://www.stepup-speakout.org/Controversial%20Stu…
Be well, all!
Binney0 -
Used to be my PT but if you buy it on location they should fit you.
0 -
lago are you really feeling better (mentally) off the Anastrozole? I've just started having panic/anxiety attacks - 3 in the last week. If this continues a break might be a good idea for me too.
I was on Anastrozole and mentally felt fine - ok maybe headaches and some fogginess but not "moody" mental se's.
I started Anastrozole in Sept after being on Tamoxifen for 2 years and having a "recurrence" in my femur. I say recurrence but no one is sure if it was that or if it was there all along from my original bc dx.
On Tamoxifen I had a lot of SEs (headaches, hearing loss, blurred vision, dizziness, excess body fluids) and when I started Anastrozole I had a lot more but different ones (body aches/pains, hair loss, still some headaches, dryness etc.)
I switched over to Arimidex about a month ago after hearing about the negative stuff media about drugs from India (mine was).
BTW - I just told me MO I wanted the brand name and he wrote no substitutions on my script.
I still have the body aches/pains, headaches (but not as frequent) and the hair loss has subsided but I thought I was doing ok with the switch and maybe even feeling a bit better.
However the anxiety lately is freaking me out. I take my pill in the morning (as always) and today I'm panicked, chest heavy, trouble breathing and sobbing uncontrollably by the afternoon. For no apparent reason!
Nothing is going on with me medically, all of my follow ups with drs have been positive and I don't see anyone again until July and August.
My old dog died last month but I'm ok and dealing with it.
I'm not working so my days are not stressful or harried. My kids are grown and look after themselves (only 1 at home now).
So what is it? I have been considering a laundry room reno but I don't think choosing a new washer and dryer should cause me this much anxiety!! I just feel really sensitive and on the edge of losing control.
It must be the Arimidex. Could it be?
Marie
0 -
how do you find out where your pull was made?
0 -
fluffqueen01 if you go back to page 148 at the bottom Lago posted a linky to look up your pills
0 -
Mariek - Have you ever tried switching to take it at night instead of in the morning? I did that some time ago, hoping it would improve my daytime mental fuzziness. I think it worked, and I also slept just a little bit better too. Might be worth a try as a controlled sort of test.
0 -
MarieK depression went away in about 24 hours after taking the pill. My MO is now recommending Aromasin.
Fluff it's hard to find out where your pills are made but I try to stay away from India based companies. Here is a linky to 17 different images of Anastrozole. If you click more information it will tell you the manufacturer. So look at your pill and then find the manufacturer. Then google where your manufacturer is based.
0 -
Mine is by Caraco Pharmaceuticals Laboratories, LTD. It says something about detroit somewhere but I am sure that is probably a pass through.
0 -
Oh yeah, it's India
0 -
Looks like it might be made in Mexico?
0 -
Mine is TEVA. I think TEVA originates in Israel but at lago's link it shows Teva Pharmaceuticals, USA.
I'm checking in on this thread because all my liver enzymes are elevated since starting on Anastrozole.
0 -
Teva headquarters is in Israel. I do believe it is the largest generic drug manufacturer. Granted they could have factories in India as well as US companies but from what I read it's companies based in certain countries (like India) that have more problems with bootleg copies.
0 -
Oh brother. My Anastrozole is manufactured by Natco Pharma Limited in India. Says so right on the bottle. lago, did you get yours at Walgreens? I see you're in Chicago; I am out in the suburbs. Maybe I should try a different pharmacy.
Is this something to be worried about? I'm sure my insurance won't cover the name brand.... I would be shocked if they did.
0 -
On a sort of related note. My go to Pain reliever after surgery is Vicodin, so after my recent foot surgery that is what I requested. Well, wherever this India based generic is made they are using some kind of filler that caused me to have horrendous headaches for 12 hours each time I took it! It took me about 3 or 4 doses to realize that what was causing it. So it is not always the drug that causes the SE's, sometimes it is the fillers they use when they manufacture them. Now I need to get a new script and get it refilled a different pharmacy with a different brand.
Not everyone has issues with the India manufacturers, but many do.
0 -
laurie2025 I was getting it at Walgreens when I first went on it but I found Costco cheaper.I would have to special order with Costco but this year the pharmacist at Costco refuses to sell it to me at the same price as the Indian manufacturer. So I tried CVS. No brainer for me. Teva is $70 at Costco, About $10 at CVS. Shop around and see who carries it and how much. I have Aetna so I can sign into the site and see the cost at different pharmacies.
0 -
Ok, out here it's about $15 at Walgreens. Walmart is almost $20. Everything else is higher. Hopefully there'll be an Anastrozole price war, and India won't end up being the cheapest. (I won't hold my breath).
0 -
Laurie it's your insurance plan that sets the price.
0 -
Im in Algonquin, get mine at Walgreens, its Teva. On it since Sept, no real side effects. Maybe some brain fuzziness
0 -
I don't have lymphedema and I flew a couple of weekends ago. I didn't wear a sleeve and had no problems but I was in the air only about an hour each leg of the trip. I wonder if the time in the air makes a difference?
I get my anastrozole at Shopko ($12) but insurance covers it. Insurance won't cover Arimidex. So far, I'm tolerating the anastrozole. Having to take pills each day is such an odd experience for me. Before all this I was healthy except for arthritis in my knees. I was at a good weight, no BP problems, no cholesterol problems and minimal hot flashes. Now I've gained 15 lbs (seems to be all around my middle), border-line high BP, slightly elevated bad cholesterol, daily pain in my knees and the hot flashes are rampant! Thus the verb tolerating. It could be a lot worse!
0 -
checkers I have read that a short plane trips (1-2 hours) are not as much of a problem as long international trips. But like I said I felt a difference in my good arm the one time I didn't wear it so I wear on both (2.5 hours trip for me). I have a friend that had 25 nodes removed and radiation. Treated the same time as me and flies all the time and to date no LE. I am not overweight, didn't have radiation and only had 10 nodes removed on the left side BUT I do have a family history (mom/great uncle have/had in their legs). They don't always know why some of us get it and some don't but I have also read family history might be a factor… and in my case I do believe it is.
0 -
Prolia update… finally approved after being denied. I hate Aetna. My MD had to do a peer to peer phone call to convince them I should be doing this drug. Yesterday when I got the notice I was denied I was about to send a fuck you letter to Aetna stating if no Prolia then I'm not doing any more endocrine therapy… they can pay for cancer treatment instead.
It even states that one of the things I should try is going on a SERM with another oral biophsophonate. Yeah right so they want me to try a drug that has a risk of blood clots without knowing my medical history. Also suggests I should try another oral drug… again without know my history (issues with gerd). I guess getting gerd on Fosamax wasn't enough. They really wanted me to suffer another month. So glad my MD fought this.
and I say it again I hate Aetna. I want to get that red winged black bird that attacked me after them.
0 -
I got 30 tablets at Target for $10.00. Breckinridge is the mfg. Anyone else have this brand?
0 -
Ohio, I took that for one month, it's from India, then I got the real thing from the manufacturer. It was $40 a month, they just lowered it to $30 a month.
I was paying $6.50 with my insurance for Breckinridge mfg. I cannot tell a difference, quite honestly, but I have only been taking it since mid Feb.
Worth the extra $ for piece of mind. Your MO has to fax in the prescription.
0
