For Arimidex (Anastrozole) users, new, past, and ongoing
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5LuvBugs
I'm with you...I hurt all over too. Just got up to take pain meds and use arthritis cream on legs and back.
I am 4 years on Arimidex. Not sure if I can blame Arimidex. Since diagnosis I've developed osteoporosis , weight gain, stiffness just to name a few. I found a yoga video on YouTube for those with osteoporosis that I might try.
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5LuvBugs Good to see you.
Pawprint I'm 3 yeas on the drug and I too now have osteoporosis (diagnosed after 2.5 years on it) continued weight gain and the stiffness in my feet and hands seems to be increasing. This emotional wackiness needs to be addressed too. I'm really considering taking a month off to see if the drug is the issue. Have not taken my pill yet today.
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Like you, LuvBugs, I'm one year into this thing. I think I'll be able to "do" four more years,but will probably need a break here and there. Yesterday, going outside for my second day in a row of serious yard work, figuring I was in for some post-exercise aches and pains, I looked at the pill and skipped it. Luckily, it is one of those meds whose effect is cumulative, so I felt fine doing that, sort of as a hissy fit demonstration. Today, back on it.
I really resonate with the "pudding." I've got it too.
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Hi Everyone, I have been reading all your posts for quite a while in anticipation of starting anastrazole. I did start two weeks ago and while I tried to go in with an open mind (I have a friend who has been taking it for 2 years with not problems), it hit me like a ton of bricks! About two hours after the first dose all I could do was cry and lie down in bed. It was horrible! But I told myself that I need to adjust to it. I am having terrible pain in my hips, feet, hands and other joints, but I find it starts to get better the more I move. I am also taking Advil a couple of times a day. It does make me very tired, too, so a few days ago I switched it to bedtime. I am actually finding that I am sleeping better now, but the pain is still there. I don't know how much of the pain is residual neuropathy from the Taxol, and how much is from the anastrazole. When I go back to the MO for the three-month follow up I will ask about the brand name instead of generic. I also see my PCP at the end of this month so I will ask him what he thinks too. I did see the earlier posts about getting the brand name for $40/month from the manufacturer so I may pursue that as well.I too and going with the mindset that the side effects beat the alternative! And I try to tell myself that the pain is the "friendly reminder.....":
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Rhody - for what it's worth I switched to taking mine at bedtime too (within a few months of starting it) to combat fatigue. I believe it helped. I do still have occasional bouts of fatigue but nothing like those first few months.
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lago, about 2 years, I had to take an important test and needed to have a clear mind. My onco took me off the Arimidex for one month. At first, I didn't notice anything different, but the middle of the 3 rd week going into the 4 th week off Arimidex, my emotions were stable, I could think clearly, no body pains or stiffness, and I had more energy. I felt like the old me prior to bc. After my test on the 4 th week ended, I had to start up the arimidex again. Made me so sad to find all the negative symptoms returning. Arimidex is a good medicine, a strong medicine, but I'm thankful it's only a temporary medicine. One more year and I'll be done taking Arimidex. I'm looking forward to it.
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Thank you Pawprint. I'm just sent an email this morning letting my onc's NP know what I'm doing. I know they won't be happy but I really need to know if this is the cause.
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Update. my onc's NP just messaged me back. She seemed OK with it and told me to contact her in a month to see how I was doing. Obviously they have had these issue before... and I usually don't complain so she knows something is up. I also mentioned 20 years ago I was on a med and got the same kind of wacky on it as I'm getting on Anastrozole. Took a 3 months to figure out it was the drug (and I only needed to be on it for 3 months). Granted the problem was they had me on too high of a dosage based on my weight.
My poor DH. We just got hitched... I think he was freaked that he made a bit mistake until I finally said to him I think this drug is making me nuts.
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Lago - don't know if you remember but when I was on Arimidex and hated it so much it was because aside from the hellishly sore bones and muscles and extreme insomnia I was crying 24/7 and at one point was suicidal - it's just fine for lots of people but when it lets you down it's time to change. I am on Aromasin/Afinitor now (I am Stage 4) and the Aromasin hasn't affected me at all (the Afinitor is another story but even that isn't as wicked a drug as the Arimidex was on me) - you're not alone.
S.
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202sandy thanks so much for posting. I know it's hard to post this kind of stuff. I refuse to let it get that bad but I am seeing a pattern. 2-3 nights a week I can't get to sleep and at times I can cry for reasons that would never put me in tears. I'm not that kind of gal so I know this must be drug related. This is not normal for me. I define myself as a happy person.
I may have that discussion about Aromasin if in fact the Anastrozole is what's making me feel this way. So frustrating because I seem to be handling it OK… Yet I'm the type that doesn't really know how badly they feel until they start to feel better.
My gut say its the drug. I'm usually right with my gut.
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Lago, you are definitely a happy, confident person, who has helped so many on these boards. I starting reading this thread several months before I started Arimidex. I agree with you on trust your gut.
I am doing ok on the drug. But, I started anti-depressants right before & I have sleeping pills when I need them. They are both a short term plan. My PCP dx me PTSD during rads. I know I waited too long to get something. I am a happy active person also. Never needed these kind of meds, so it will be a process to stop taking them & see how I do on Arimidex without them.
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Holeinone the first 2 years I was doing great on the drug. So who knows. Also I think part of the lack of sleep might be the reflux from Fosamax… Looks like a few more phone calls to doctors today.
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I have been on Anastrozole since Dec 26, that's almost 4 months. Within the last week, my depression has become worse. I was diagnosed as clinically depressed many years ago. My PCP put me on Paxil and I was a happy-go-lucky person for many years. Within the past several weeks, my dose has been increased 2 times. Now, I am at 40 mg. daily and it feels as if I am not even taking them. I always feel like I am right on the edge of a meltdown. I am so depressed and sad. Also, it's hard to concentrate at work like I need to and I have no energy or desire to do anything. What I would really, like to do is go home, snug up in bed with my little doxie doggie and stay there until.....until......I don't know.
I want to have fun again and be joyful. Yesterday, I should have been thrilled to have my 4 grandsons over but all I could think about is how sad I was..........alone.......
Thank God, I go see my NP to my cold as a fish onc on Friday.
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BB, wish we knew more about the affects of radiation, but at least my PCP was honest enough to say we don't know how much is too much. What they seem to know is it might cause another cancer. I think we are most frightened of what we don't know.
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denilynne I hear you. I have a milder dose of what you are feeling and it's driving me crazy too. Sandy seems to be doing much better on Aromasin. Have you discussed switching with your onc.
Of course you can't get anything done if you are always on the edge of a meltdown. BTW I didn't start to have SE from Anastrozole till the 3rd month. Didn't get the emotional wackiness till sometime this year… and it sorta creeped in. It is now at a point where I can tell this is not normal so I'm addressing it and finding the cause. Not sure why it would take 3 years to kick in but who knows. But in your case it sounds like you need to try something else before this gets way out of hand.
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Thanks lago. I did have a meltdown at work today. Thank God I was in my office. Thankfully, I got myself under control. I can't wait until Friday.
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Hope you guys can get some answers!
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I did a pilates class, pleasant but overworked my neck. 1.5 years only (1 yr AIs, now 6 mos Tamoxifen) I have better night and worse night. Terrible night last night. Both hips hurting and my arm, with the whatever tendon/shoulder impingement that I've had since I had last surgery. I'd done PT several times, no relief though it was nice. I sort of gave up on my arm. I can reach straight forward but not on the sides or stretching to get something diagonally, etc. I am going to see a gp who is a cancer survivor in May. She is starting to focus on women who have had cancer and the health things we deal with. Hope she is helpful. She also does nipple tattoos which I am considering. Still using temporary tattoos that last a week or two!
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I have't had any side effects yet from Anastrazole, but I sure can sympathize with the effects of hormone changes - especially estrogen decrease. At one point during perimenopause I sobbed and sobbed because the dog trainer canceled the class~!!!! Not that was bizarre. Hormones and loss of hormones drive us to all sorts of crazies.
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That's a good reason to cry! I loved dog school with my Aussie LOL. But you're right.
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doxie, what did your hand doctor say? IamNancy, I have heard the corticosteroid injections are very painful & dread it. I was diagnosed with de Quervain's tenosynovitis by my rheumatologist - I also have osteoarthritis. I am wondering who treats this. Hand surgeon, orthopedic surgeon, or rheumatologist?
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Sharon1942 - another option for the de Quervain's is an iontophoresis patch. My PT therapist used this on my de Quervain's. Same idea as the cortisone shots, but no injections. It is a large battery band aid that they put a prescription cortisone on. The battery produces a mild charge that forces the medicine into your skin. Not painful, just a little prickly sensation. I had this method done due to LE, thus no injections for me. Another easier option if you are not ready for an injection.
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I was diagnosed many years ago with deQuervain's. My surgeon tried bracing it first but the pain was getting really bad so we opted for surgery. He was a great guy...Dr. John Barrasso, now U.S. Senator John Barrasso. I opted for a block rather than be knocked out. He had operated on me twice previously for other tendon issues. During the procedure he talked to me and said he found the source of the constriction. You have two tendons normally in that hand/arm. I had four. He said I likely will develop it in my right hand also as I probably have double tendons there as well. So far so good. I have never had a problem with that hand since.
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BayouBabe, I don't have LE, but was told not to get injections in my left arm where nodes were removed. I will ask about that patch. Thanks for the info! Janis, glad to hear surgery resolved your pain!
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gee whiz, I already started Tomoxofin ...do you know the difference between Tomoxofin and Arimadex?
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BB---hip hip hooray!
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BB--you mean the brand name is better than the generic???? I thought Anastrozole and Arimidex was the same compound??? Glad you are feeling better.
Stage 1---tomoxafin works differently---a simple way to say it is that Tomoxofin somehow catches the excess estrogen to bind to it and not let it make cancer cells. Arimidex prevents the body from converting aromatase into estrogen, so basically you have no estrogen with Arimidex--hence the bone issues you don't have with the Tomoxafin. Women who have not gone thru menopause ususally get tomaxafin
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BosumBlues actually Tamoxifen can be given to post-menopausal women… and before there was Arimidex they all were getting it. The studies show that the AIs are slightly better but only for post-menopausal women. That's why those who don't go out of chemo-pause usually get switched to an AI after a couple of years.
I must say I too feel better even though I just stopped taking it on Sunday. I had no idea that my back pain and shoulder pain was made so much worse on the drug. Also didn't realize how stiff I was. I barely feel any discomfort at all! Also I feel my emotions are not all wacky now.
Should be an interesting coversation after I've been of for a month.
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I'm on the generic, from India, but not for much longer. I've been getting more aches and ows. Tried to tell my self it was my knees and lumbar. Both need surgery. "Forgot" to take the devil pill this am. What a difference in that short space of time!!!!
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Hi all, the difference between a brand name and it's generic is not the compound, which is supposed to be the exact same, but the fillers that bind it into a pill can be different. I'm guessing that cheaper fillers which would bring down the cost may be the culprit in different SE's. No telling what those fillers may contain.
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