Arimidex - Coping with the SE's
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Thanks Bogie. I called my oncologist's nurse and she checked with my oncologist and she just called me back. Six months ago when I asked her about it, she told me it was a common side effect and to try to control it with over the counter water pills. Today, she said the oncologist said it is not that common and that I need to go see my general practioner because something else is going on. I feel very frustrated! I told my oncologist at my last visit a few months ago that my joint pain was severe and he told me ibuprophen should work for that...I have found nothing that has worked for it! I guess I get to go see my general practitioner tomorrow and let him know that all these side effects I have been getting, I didn't have problems with until I went on Arimidex!
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cowgal, if the swelling is "severe" to the point where you are uncomfortable, I think it's definitely something you need to have your doctor SEE, it can be a symptom of many things.
I have "some" swelling in my fingers, stays about the same since I started Arimidex 5 years ago. Notice ankles swell if I have too much SALT - any kind of shell food, really anything with a lot of salt, and I notice my ankles swell. It is a SE of all the AI's - but not as severe as I think you're describing. Whatever the undelying cause, the AI is probably a contributing factor. Good luck.
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Sunflowers, my feet and ankles have seemed swollen pretty much to some degree most of the time. Saturday when I woke up, they were swollen up like I had sprained both ankles! I have been taking the over the counter water pills since then and it has come down quite a bit but still swollen. My knees get swollen too. I will see my doctor tomorrow. I am going to cover the joint pain with him as well. My MO has not done a bone density test on me and I have been on Arimidex for a year. When do most others have this done? I am only 48 but I am pretty concerned that my pain and swelling may be from something relating to bone loss.
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cowgal...I haven't had my bone density test yet either. I have been on Arimidex for 4 months now. My MO told me to get my GP to order a test for me as well as a mammo. I had a baseline bone test about 13 years ago but I am curious to see what has happened since.
I am just getting hip pain this week and in the leg that never has bothered me so I am wondering if it is the drug. Actually this is the first SE I have had. Am taking Claritin just to see if it helps like it did for Neulasta.
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cowgirl
I had a BASELINE bone density test jsut before I started Arimidex. That seems to be the SOC for Dana Farber, Boston, MA, but I don't know about other places. I now have one every two years.
Hope your doc has a good way to deal with swelling. It is so uncomfortable. Never heard of it as a relation to any kind of bone loss. We can get lymphedema any place in body - hoping it's not that.
In hindsight, I can see how my SE's changed over the years - I'd say now the first year was the hardest. Seems to have gotten easier.
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My MO also ordered a baseline bone density test prior to my beginning Arimidex. It came out fine so he's confident I won't have any problems. I used to lift free weights, so I think that helped my bone density. I've been on the drug for about a month and a half and no SE's so far...
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My feet and legs (well, anything below the waist) ache like crazy in the morning. Sometimes, the pain subsides as the day goes on, but usually not. I try to exercise as much as possible, with no better results.
I have heard a lot of people take a "break" from Arimidex. I am 1/2 way through now, and feel like an old woman.
Has anybody just stopped taking the Arimidex for a few weeks, without a doc's permission?
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as far as budda belly, I think this way, the pill is taking away the estrogen much like a older lady and if you look at most older ladies they seem to have that budda belly...
I think inside I am about 80 years old... Ginger
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ginger -- don't think that! Come on -- positive thinking, law of attraction and all that! Along that line of thinking, has anyone heard of Abraham-Hicks?
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Hello fellow members of the A Team, I'm about to start a thread on Advocacy Forum to post this, but figured I'd put it here too for your convenience. The PDF download is 63 pages, and it is truly, truly amazing:
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MOT - just saying, I work in a place that houses seniors so I've seen my share of the no estrogen club. LOL
Nope never heard of Abraham-Hicks
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TAKING A BREAK - I revolted and took myself off Arimidex for 3 weeks - it was awesome, I felt almost like my old self. Then I had my follow up with my onc and she put me on Tamoxifen.
BONE DENSITY TEST - When I started Arimidex my onc was going to schedule me for a baseline bone density test but I had just had one before I started chemo, so we had those results. I have some bone loss in my left femur & hip so going from Arimidex to Tamoxifen should at least not make that worse.
I tried to make the argument that I am ER- so why do I need to take any of these, but she said ER- responds best, and the 2nd group of best responders are PR+, which I am. So I am just not getting off the hook on this daily dose of something. Two weeks into tamox - so far not having the horrible leg & joint pain I was having after 2 months of Arimidex. A little stiff, but nothing like the Arimidex.
Debbie
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GirlPower...my hip and joint pain didn't start until well into the 4th month of Arimidex...I am trying Claritin but doesn't seem to help like it did with Neulasta...was just a hope!
My MO has me on it even tho I am only 1.5% ER+ and PR-...go figger. If this pain continues he said to see him and we will take it from there. Tamoxifen is not an option for me because of the possible SEs of blood clots. One day at a time.
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Does anyone take Tramadol for foot and joint pain?
Enjoy your evening
Balsie
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Hi All,
I hope everyone is well! I just wanted to mention that after a year and a half on Arimidex (with lots of side effects that I worked through one by one), I decided to try Aromasin to see if I would have less arthritis on it. I am over a month in and happy to report that I am much more mobile. Still have sore feet, and stiff neck (3 herniated disks), but generally much more confortable. Some insomnia but I had that on Arimidex too. Also take some Claratin or Benedryl most days because it seems to help with overall joint pain.
Just throught I would throw that out there for folks who get too discouraged on one AI - there is always another that might work better for you.
Best, Beau
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I think you're right about the se's being cumulative. before my chemo i was on arrimidex fora month and felt nothing. i even asked my onco how did we know i was metabolizing it at all, i felt nothing. But now, after the chemo, i've been on it for 2 months and i don't know if it's the arimidex or the arimidex plus the chemo but i'm wiped out and achy all over. I'm glad to hear that i'm not th eonly one. it's hard to know that when you don't know anyone else going through this.
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After almost 5 months on Arimidex, I am starting to get hip and shin pain. After 15 years of not being able to sleep on my side (herniated discs also) I have been able to sleep on my side and now this! I have always had sporadic pain in my right hip and now it's in my left as well. Am trying not to sleep on my side to see if that will help but then the neck hurts...can't win! I am also taking Claritin altho my MO said it likely won't help.
If this continues, I will see about changing the drug to Aromasin or ? It's just so frustrating that after all this to be in pain is crazy! I had hoped I would be one of the lucky ones with no SEs.....pfffffffft Enough of the whining already!!
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Well, lab results came back today and everything including my heart was fine. My general practitioner believes that the Arimidex IS to blame for my swelling. He said it had increased my blood pressure and caused the water retention and told me that when I came back to see him in a week, I would be 5 pounds lighter. It is only one day and I already have cinched my belt up a notch. Next week, I'll see if he can help me with the joint pain.
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YEAH!
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YES, cowgal, read back a few pages - there are lots of ways we've gotten rid of the pains.
I meant to say, when I stopped all carbohydrates ( except Quinoa & frits, veggies) the swelling really went away from my feet, ankles, Still have what I call "sausage fingers" but there we are
Better than a reoccurance.The swelling was the worst in my first year of A, much better now ( 5th year)
good luck...
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Good news about your heart, cowgirl. Perhaps swimming will help with the swelling. The cool water and movement may work and cool water actually acts as a diuretic because it increases circulation.
Back in the dark ages I used to be a PADI scuba instructor. The cool ocean water (85`F of the tropics) caused me to lose two pounds with every dive. Of course it was only temporary, but still.
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Not sure what to think of this so thought I would ask for some input. Just got a letter from the MO stating that my bone density DXA scan showed "some osteoporosis" and " you want to work closely with your primary care physician to be certain this is addressed as thoroughly as possible." This seems vague advice. Since I work where I am being treated I have a copy of my scan. It shows a T- score of -2.5 for spine , -1.5 for hip and -1.3 for femur which is pretty average for my age (60). I am low risk for fracture according to FRAX. Normally I would not think I would need medication but was hoping for some direction in view of increased risk with AI treatment. I thought MO would be the one to do this.
So my questions: How did you decide on a plan to address osteoporosis and who is helping you with this - MO or primary care physician?0 -
I have 13 more days left. I went to Ireland about 5 years ago and started Arimidex when I returned home and now it is almost over. My doc gave me another 1 month after that but I am not going to take it. I am moving back to the USA in July and I will be Arimdex free. Maybe my ears will continue to buzz, maybe my knees will continue to hurt when I walk, but my diet keeps my BP very low and my weight just right. I have changed my life because of my cancer diagnosis. It is o.k. I love my life. More than I could have ever imagined. Hold firm to the program all those of you out there. It goes by quickly. Not easy, but know how special you all are.
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About bones. My thyroid specialist told me to hold and wait until after Arimidex and then take the test again and see what happens. She seems to think my bones will improve. I am with her.
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Hey gals......
I've tried Femara.....joint pain. Switched to Aromasin......WORSE PAIN and NEUROPATHY especially in hands and wrists. Literally, debilitating. I've now been off of Aromasin for almost two weeks......still lots of pain in my wrists and joints. And when I say pain.....I mean P A I N.
Now, I'm going to go on Arimidex.
Has ANYONE had any experience with these SEs at least leveling off? Honestly I'm no sissie....but do these SEs ever get better? I felt better on the chemo. This is now becoming a quality of life issue for me.
I wear wrist guards about 99 percent of the time now.
thanks all,
michele
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McGaffey- congrats on finishing your treatment and thanks for the feedback on the bone issue.
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Hi, vivirasselena
You are a trooper! I have been on arimidex a year. I thought the SE's would get better as time went on but unfortunately they have gotten worse. My Onc has taken me off for six weeks for a break. Good luck to you. Everyone is different.
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Dobie,
I was stable osteopenia (4 years) when I started arimidex. My MO ordered a Dexa 1 month after I started the arimidex and I had osteoporosis. Don't know my numbers on that. My MO is treating the osteo issue with Prolia. My PCP isn't currently involved in the issue. That said, I also haven't seen my PCP for a year and will do so next week but I don't think he'll take over this treatment. Don't know if that helps you or not.0 -
I have been on arimidex for a year and seven months, make that six months because I just took a month off. Like srbl62 my side effects have gotten worse over time. What is unusual is that during my time off the side effects (achyness, carpel tunnel) didn't really get any better. I just saw my Onc today and he said that the side effects should have gone within 1 - 2 weeks. So what is causing my side effects I asked.. basically he said it is the aftermath from chemo which may have caused fibromyalga or it could be arthritis. I will start arimidex again tomorrow. Do you all take it in the morning or at night? I have been taking it in the morning at the same time as synthroid.. wondering if I should change that. Also reading this thread has reminded me to get a bone density test again.. I was osteopenia about a year ago. Do you all get tested once a year or every couple of years?
vivirasselena.. hoping that Arimidex works better for you than the other AI's!
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