For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Peggy congrats! I'm glad you had a great day. I'm only on 43 this year. LOL I'm also allergic to a lot of abx. Illins, mycins, cyclines. But Cipro is one i CAN take. But Vancomycin- nope! Daptomycin is a newer one very expensive and I can take that one. The flaxion ones seem to be ok for me so far. I m also allergic to codeine so doctors always give you the side eye look e cause that's what all the druggies Say So They get the good meds. LOL I get great big raised Hives that last for weeks.
Much love to all
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Lovely picture, Peggy!
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What a lovely photo! You are gorgeoous. And such a handsome blue-eyed charmer!
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MoonFlower, doctors do seem to think we're making up our reactions to antibiotics etc, don't they? I can take tetracycline (which, of course, they don't make anymore) and doxycycline (which they now charge a fortune for, didn't used to). Nice that you have choices. I get about the codeine. DH can't manage it either. At least he doesn't get hives (those are terrible).
Congratulations on reaching 43 this year! I find it hard to believe I've been married to the same wonderful man for nearly 3/4 of my life. Was I never not married? LOL.
HUGS!!!
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Congratulations Peggy, beaut photo of you and your man..luv 'n' stuff Elaine
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Hi all,
I haven't been active on BC.Org for quite awhile now and I never posted on this thread before. You will also have to forgive me but I haven't read back over the entire thread so if I am going over old ground please indulge me. But lately I've been feeling I could do with some advice/support from others who may be in the same situation as me, so here I am!!.
I was dx in 2009 and following the usual rigmaroll of treatment I ended up on Tamox. I had suffered severe bone and muscle pain while on Taxol chemo and this pain persisted while I was on Tamox. After three years I was changed to Arimidex (I take the generic anastrozole). Bone and muscle pain persisted along with other side effects. For the past six years I have been taking paracetamol (4000mg/day) and Melfin (ibuprofen 1200mg/day) for pain. It still only takes the edge off and some days I'm very good and others not good at all. I was on Lyrica for a little while but I could not tolerate it so this was the pain management my dr prescribed. Lately though I've been having a severe ball of pain affecting my left hip while I'm in bed. It makes it very difficult to sleep, throughout the day it is either a dull tolerable pain or completely absent. Over the past years I developed a hiatus hernia and inflamed oesophagus and I take Lanzol daily to help with that situation.
My other main problem is weight gain and difficulty is losing weight no matter what I do. When originally dx I was obese so following treatment and while taking Tamox I lost over 100 lbs and got to 130lbs over a year and 8 months. I gained a little and stabilised at about 145lbs and I held this until I started anastrozole about 18 months later. Within a short time of starting on anastrozole I had gained 20lbs and no matter what I did I couldn't lose it. In fact it kept creeping up and eventually I did give up and ended up back at around 210lbs. Over the past 2 months I have managed to lose about 8lbs through food tracking and exercise - but it is incredibly hard and frustrating especially with my hip causing so much discomfort.
As for going to the Dr. well he just says he is aware that the aches, pains etc are side effects and all I can do is treat them as such. So if any of you have any advice for me I would be grateful because I have been putting up with this for a long time now - I'm tired and I have to wait until 2017 for my oncologist to review the anastrozole situation as he is feels that it is important that I stay on it for at least 5 years. But now 6 years after dx and in daily pain I am starting to feel drained, is this normal??
Would love to hear from anyone who has any tips for me. Thank you!
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Congrats Peggy, great great picture!Mommy2three--don't expect any side effects--I have had few that I could feel. some miled nausea (never threw up) for 2 weeks that went away on its own. That was it. I've actually lost weight instead of gain it. Keep active and don't anticipate-- Many people take this w/o any problems.
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Ain, sorry you are having so much pain. Have you tried exercise? I get relief from swimming and recently did PT for a nasty back ache. The PT folks gave me wonderful stretches to do every morning and night and it does help
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Ainm, there are other AIs besides anastrozole that could be just as effective for you. Femara and Aromasin. I would guess you haven't been taking Fosamax or any of the other bone protecting drugs. I don't know what to tell you. But if you can, I'd insist that your MO treat your symptoms and, if possible change to a different AI. Your quality of life is vital and it would seem it isn't what you want it to be.
Some of the other ladies who have suffered with similar SEs may be better able to advise you. I've been lucky to have none. Wish I were there to give you lots of HUGS and comfort. Try to stay positive.
HUGS!
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I don't have the aches and pains on Exemestane. I had plenty on Anastrozole (TEVA)
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Peggy: lovely photo of you and hubby, congrats on your anniversary
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Thank you all for the kind words. I do so appreciate them! HUGS!
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IF YOU ARE IN SOUTHERN MICHIGAN, NORTHERN OHIO OR NORTHERN INDIANA (OR JUST WANT TO TRAVEL), A GROUP OF US IS HOPING TO GET TOGETHER AGAIN SATURDAY MAY 30, 2015, 11:30 AM AT Sand Hill Crane Vineyards Jackson Michigan.
It's a wonderful venue and we had a great time meeting each other. Be prepared to talk non-stop!!
If you think you'd like to come, post on this discussion board SE Michigan April 2015 - now May 2015 Meet Up or PM me.
Everyone is welcome!
HUGS!
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Well, Ainm, there are the annoying aches and pains we all whine about here, and that we've just got to live with, and then there are the ones that really hurt. Sounds like your hip is one of the latter category, and, yes, someone (onc, primary, ortho) should evaluate that problem, because chances are there is something they can do about that particular pain. Speaking for myself, my hips hurt so much on arimidex that my onc ordered a bone scan. The scan showed arthritis practically everywhere except the hip. Next came physical therapy. Surprise! I had bursitis and PT fixed it right up. For months, I'd been bellyaching about arimidex, which turned out to be a total (or near-total) innocent.
I lost weight on arimidex, by the way, gained 10 pounds in 10 weeks on aromasin/exemestane, then, although my joint pain was better on the new pill, was very happy to switch back to arimidex. Still bellyaching, by the way.
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Try loseit.com.....it is a great way to track calories, exercise (and you can 'get' calories back through exercise...which includes yard work, housework, shoveling etc....daily activities as well as formal exercise). There are also graphs on eating patterns, nutrition, your body mass....lots of tools & you can add friends and have a little competition if you want. Another good tool is a FitBit (you can track calories & weight loss with their computer program, but I like loseit. better). The great thing about a fitbit is that it shows how many steps you take during a day, what that translates into as miles, as stairs, as calorie burned off, and it vibrates when you have reached your goal for the day. So it makes you think of ways to ADD movement into your routine.
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Spoke with the MO today about my 'scalp' reaction on 1/4 dose anastrozole (Accord). She said that it has happened before, but she was surprised such a small dose triggered it. We can add that to the SE list!
I suggested Teva. She said nope, and wrote for brand name Arimidex. Wonder what my insurance company will say about that. The pharmacist has to order it and she agreed to call me before it's filled.
I mentioned in an earlier post that I found it odd it was a 'one size fits all' dose - after all, most other meds have different strengths.
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You can go to the arimadex web site, get a card, and pay $30-40 for the rx. I don't use it, don't remember the price.
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Glad your MO took you seriously and didn't brush off your SEs. Hope that using the brand name does the trick. Your insurance should pay and fight them if they resist.
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Peggy - I was prepared for her to tell me it was not related. I was so relieved to hear that this is a known reaction. Vindicated!
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Got that right, Jilly! HUGS!!
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I have been off a few days, and come back and see that I missed your Anniversary Peggy, congrrats and what a wonderful picture.
Have had a terrible cold for the last few days, bad cough, aches pains, went to the doctor yesterday he gave me some steroids and a shot and a cough syrup....lol only to find out and have never had cough pills??? So far they aren't worth a crap but my doctor is kind of not worth a crap either..
Should be back to normal in a few days.
Hope everyone is fine and again so glad we are all getting together again late May!!
Mary
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Peggy you are so pretty! Happy Anniversary...
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Aw, gee, Mary, that's rotten. Hope you're on the road to recovery. I'm glad we're getting together again too. It was such fun. Thanks for the well wishes.
Nancy, thank you! What a nice compliment!
HUGS, Ladies!
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Jilly, I use the Arimidex program. Its $30 a month. Go online and sign up, its simple and they mail it to me. I switched just to see if it would help with the stiffness. I am not sure it made much difference but I decided to just continue with name brand, since I had to pay a copay even with the generic, so wasn't that much difference.
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And your insurance company is not involved in this, so no denial, nochit from them.
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no, no insurance. I just signed up online and the actual meds come from a pharmacy in Florida. I am supposed to be on auto refill but so far, haven't seen one this month. Hope it shows up soon. If no, I'll go get my generic refiled and make do until the real ones show up.
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Hi AINM. I'm sorry you are having such a rough time!
Can you get your hip checked out by an orthopedist to find out whether something else is going on in there? I read somewhere that AI-related issues are bilateral, so it could be that you have bursitis or something else going on in that one hip. My knees have that Arimidex-^%&^%-ache, but one knee has something extra going on which I'm pretty sure isn't related to the Arimidex. (I'm having it checked out on Wednesday.)
As for the weight - I've seen people say it causes weight gain and others say it causes weight loss. I've gained weight but I've also been doing a lot of comfort eating. I can't tell you whether Arimidex has made losing weight more difficult for me because I haven't really tried too seriously.
It doesn't sound as if your access to your oncologist is very limited. It sounds as if you need to see an orthopedist, and also have a good talk with your oncologist sooner, rather than later!
I hope things improve for you soon.
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OK- this is kind of on the subject/off the subject.
Saw a new PA in a new Doc's office aabout my ear pain, filled out the form with my medications list.
Noticed when I came home (60 miles) that the discharge form lists me as taking
anastrazole powder. I know I put down 1 mg tablet. I google it, and it pops up.
So if the fillers are the damn problem, why can't they put the pure poweder in a gelatin capsule and give it to us?
Just Saying.........
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'Cause that would be too simple and cheap
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Ha!
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