Arimidex - Coping with the SE's
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My Mom is in her third year of taking Arimidex, and it is breaking my heart to see the joint pain she is having in her legs and feet. Just walking is becoming such an effort for her. Does anyone have a suggestion for prescription pain medications she could easily get? Or, is there another AI with less side effects? Is anyone out there having severe joint pain like my mom? If so, could you please share your suggestions with me? Thank you so much in advance.
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She should try a different AI.
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Sunflowers is right. There is no way an aromatase inhibitor such as Arimidex/anastrozole could "begin to act like an estrogen."
As Sunflowers said, the AI's inhibit estrogen synthesis -- they don't block estrogen. The AI's decrease estrogen synthesis by interfering with "aromatase", an enzyme that's required for the conversion of androgens to estrogen. When aromatase doesn't work properly, our cells can no longer produce estrogen using that pathway. There is no way the AI's could mimic estrogen -- their chemical structure is just wrong for that.
The explanation luvmygoats was given sounds more like it applies to tamoxifen than the AI's. Tamoxifen does bind to estrogen receptors on cells. It's called a "receptor modulator" because sometimes it simply blocks the effects of estrogen by keeping it from attaching to cells, and other times it mimics estrogen and stimulates the cells. What it does depends on the cells to which it's attached.
Maybe after 5 years, its effects on breast cancer cells are less predictable. (I don't know that -- I'm just speculating, trying to understand what luvmygoats' med onco meant.)
otter
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Hi, had 6 month checkup wiht MO and everything looks good. Did ask about the 5-year mark and he says the latest is to remain on 7-7 1/2 years so instead of thinking I would be through after 2 more I now have at least 4 more! He did say the same as SunflowersMA that although Arimidex has been around for 15 years it's still not long enough to give a definite answer about what to expect after we go off, just that it looks now like the longer term may become the standard.
Had my last Dexa scan 9/09 so he gave me script to have another since I'm about 6-months overdue. Not having any bone issues that I know of, just want to keep watch.
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My MO mentioned that I would most likely be on "A" for 7 years too!
@imjill does your mom take vitamins and exercise....I know exercise does not sound good but it really helps. I my bones and joints hurts too.....I am wondering about pain pills too or do you just continue to take Aleve or something like that. I am thinking I am going to ask for lortab...so everyonce in awhile I can take half of one, when I go to bed. What do you ladies think.
Balsie
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imjill - I have severe joint pain. I am on a generic Arimidex (anastrozole) and have tried numerous suggestions with no relief. I am going to try using the Arimidex from Astra Zeneca (name brand) to see if it lessens my side effects. The fillers used in generics are different and I am hoping that this could be the key to helping with my joint pain. I go back to my oncologist next month and will see if he has any other ideas but exercise does not help with my pain.
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Patoo-good news on the check up!
Counting down to starting arimidex on Sunday.
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Cowgal. I had severe SE's on Arimidex generic. I am now on Aromasin and have very few SE's, a little general hand pain and a head ache that seems to be going away now. My former SE's were overhwelming me and my Onc put me on a break. After the break I went onto Aromasin and am very pleased that up to today It seems I am doing well on this. You have to tell your Onc and tell again. I made a list of all of the SE's I was having. I think that focused attention on how bad I was feeling. I encourage you to keep looking for a solution that will work for you. I want to do what I can to keep recurrance away from me!
Hugs GInger
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imjill, the main Breastcancer.org site, in the section Aromatase Inhibitors, talks about their side effects, and ends with this:
"If you're experiencing side effects from taking one aromatase inhibitor medicine, tell your doctor. You may be able to take a different medicine. Arimidex and Femara have similar chemical structures, while Aromasin has a different structure."
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imjill - my oncologist switched me to Femara - and I've had a LOT less joint pain with it. Granted, it hasn't been VERY long since I've been on it, and he doesn't know WHY it would be different, but heck- I'm taking the less side effects for now! I also take Gluocosamine, and Vitamin D3, both of which I think help.
Less achy purrs,
Jenn
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I found a lovely decrease in se's when I began taking calcium citrate plus vitamin D... two with breakfast and two in the evening. Note: if on synthroid, must wait 4 hours after the synthroid before taking the calcium. It helped ALOT with muscle pain, not so much with joint pain. The effexor helped with the joints, also ALOT, but sometimes the restless legs business is a real pain (like tonight!). Can't say enough good things about the calcium, though, and it helps with bone density, too. Good luck!
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I mentioned a few weeks ago that I was going to make an appointment at the Block Center, mostly to get a personalized nutrition plan. It wasn't exactly like I expected; my interview with the Primary Care doc (who also knows alot about Oncology) was good, but more medically oriented than nutritionally oriented. I understand he is well versed in whole body issues, but his concern was that I had stopped the armidex which he encouraged me to take because it reduces risk of recurrance by 40%.
The Oncologist practices standard medicine. The program is wholistic because they cover all parts of treatment. They will also work with your doctor where you live. My test results aren't back yet, except for the "marker" tests which were within normal range. They took 18 vials of blood so there are a lot of things they are testing for that you don't get from most doctors; the rest, I think are to assess my nutritional health.
If I was going into chemo again, I would definitely go there first. (There may be other integrative cancer centers, but this is the closest for me at three hours away.) The nutritional part isn't covered by insurance and I don't yet know what my regular insurance will cover for the medical part. It isn't inexpensive, but if someone's life is at stake, how can a value be put on that.
I've been back on armidex (generic) for a week. Last time it was a month before my leg was extremely swollen and sore and my Primary Doc, after tests, thought it must be a med side effect. The Block Center doc thought it was likely just a coincidence that it happened on armidex. Time will tell. I understand symptoms often don't show up for a few months. So far I'm OK.
I promised I'd come back and report. Hope this helps. When I get the rest of the results back and the new recommendations, I'll let you know. I guess it takes about two and a half weeks.
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3bells-thanks for the update, I was recently wondering what you learned at the Block Center. Good luck with the Arimidex (I'll be starting in just a few days)-I hope the doc is right and the leg problem was just a coincidence and you won't have to deal with it again.
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3bells - I had a great deal of ankle, leg swelling during my first few months on Arimidex. Now in my fifth year - not a problem anymore - UNLESS I eat masses of salty food - then I notice my ankles turn into cankles....
good luck on all your tests...
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Imjill, ur mom could ask the dr about taking epsom salt bathes and if he wants to prescribe Voltaren gel (its a prescpt strength aspirin based gel like the ones over the counter only stronger) My boyfriend does all that for his arthritis pain and it has helped me a lot with my TE pains but even tho I am taking a long list of SE to my MO,I have not had joint pain. Anybody gaining weight on this stuff and constantly hungry? Also having strong hot flashes.
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I've been on Femara for a couple of months now (we tried Tamoxafen, and Arimidex) and while the joint pain is much much better, it's still there. I have a battle between the Sleep Fairy and the Hot Flash Fairy at night (though will admit to having stunned the Hot Flash Fairy into submission a couple of nights ago with the Gas Fairy). What I'm really noticing with the Femara is mood issues. Depression has always been a problem for me, and I'm also noticing some anxiety. So far, it's nothing too horrendous, but I just wanted to touch base with you lovely ladies.
Basically I could use a hug.
I do take Sam-E, and mass amounts of Vitamin D3, and lots of other supplements. I will get through this. Like I said, just needed a hug.
Jenn
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I know it's been said (thanks for weighing in RuthB) that the generic of Arimidex is the same....but I was wondering if anyone had a problem changing over? My BS gave me 6 weeks worth of AI and I haven't had any major SEs so far (one knee has been getting painful) but no flashes or other typical SEs. I realized that could turn on a dime--I'm only 5 weeks on it.
My insurance is $50 for the brand and $15 for the generic. (I think I can get the brand a bit cheaper if I check around, ie Costco.) I'm nervous about trying out the generic, especially with the timing of being out of the country for 2 weeks. Of course I can switch back to brand, but has anyone experienced SEs when switching after a short time on AI? Thanks!
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Hugs to you Jenn! I just switched to Femara too from Arimidex and I'm feeling that anxiety and struggling with the blues, joint pain, etc. Hope you feel better soon!! Being depressed is the pits...0
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Ladies: I am new to this thread. I have been four months on arimidex and besides having hot flashes, this last month I am feeling like I am constantly having PMS. Could this be a side effect of the Arimidex?
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HUGs to you Jenn
mkw1 - PMS??? you betcha.....
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Hi imjill,
I sent you a longer private message - test it at My home!
Best Usha
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Ginger: Thanks for replying to my post. I have never taken antidepresants. I am open to see if that helps. It is not only me who is affected by my mood swings, but also the rest of my family.Perhaps I'll try a change of diet or something natural first. I am relieved to know that I am not the only one struggling with depression, anxiety, etc, though I do not wish for anyone else to experience the same problems.
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Ginger: Thanks for replying to my post. I have never taken antidepresants. It is not only me who is affected by my mood swings, but also the rest of my family.Perhaps I'll try a change of diet or something natural. I am relieved to know that I am not the only one struggling with depression, anxiety, etc, though I do not wish for anyone else to experience the same problems.
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Sunflowers, thanks for the information on your ankle, leg swelling. Did it start easing up after the first few months?
I noticed the discussion about anxiety. I've had a problem with it for years and take xanax, but it's so much worse the past few days. And it's more like inability to cope with the least stress. I feel like a pressure cooker going off several times a day. Anti-depressants have never worked for me. It's a good thing my husband is understanding, but I worry about him because when I have this almost breakdown type of reaction, it affects him and raises his stress level.
Oh happy days may you come again!
Peggy0 -
mkw1 - AMEN to Is. 54:17
and I hear you with the mood swings, anxiety/depression, my Onc has me off the AI for 4 weeks to see if its the cause, but my therapist and I have already determined that it is... I am going to make sure to tell the Onc when I see her next week because I'm not happy about being off the AI either since my BC was screaming with estrogen! and want to get back on, if it means going on something for the anxiety/depression to get me through while on the Ai's then so be it. I guess these days I'm not happy about anything LOL
Ginger M.
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Thank you all SO MUCH for the information here ... I love BCO boards.
Here is a HUG for everyone who needs it (all of us?)
I am in week 3 of generic Arimidex. Joint pain? Check. But I had that still lingering from chemo. Once I get moving around it is OK. Anxiety? Check. Yay Xanax. Hot flashes? Check, but not too bad.
Have any of your docs suggestion Glucosamine/Chondroitin for the joint pain? My MIL swears it for her arthritis. That is on my question list for my next appt, but if any of you have opinion or experience with that, give a shout out. I take a load of supplements (God, calcium is so bulky!) and about 5000 units of D3 a day ... B12, B6, a baby aspirin 3x a week ... all doctor approved.
Thanks for all the good advice and support.
Debbie
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Debbie, I've taken the Glusosamine/Chondroitin for years - good stuff! Really helped my knees when they first became creaky - now very good for SE's of Arimidex. In addition to all those other supplements..
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Debbie, I took Gluco/Chond for years, pre-BC, and was able to actually go off of it and remain joint pain free for about 3 years, until BC hit. AI brought back the joint pain. I went back on the gluco/chond but have been able to go off again, I think because of the D3 (also 5000 iu's daily). Note, I have friends that I had recommended gluco/chond but they didn't tolerate it because of water retention so it may or may not be for everybody. Also note, it can take 3-6 weeks of taking it daily before you see any difference.
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Gingerbrew - thanks for the advice. I have been keeping a list of SEs for my oncologist. I will see him in a couple of weeks.
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Just wanted to share: I just finished reading an interview with Michael J. Fox, who gives his kids this great advice, "When you go out the door in the morning, choose happiness."
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