Arimidex - Coping with the SE's
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another gal with the creaky feeling. not so bad, but bit bothersome, still. what supplements could help? i don't see my onc until mid june and i'm a bit fed up. the creakiness has definitely worsened since my oophorectomy...agh!!
already taking 3000 mg fish oil daily.
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There is a website, askapatient.com - you type in arimidex and there are tons of people who have commented on this drug. The food thing is we are not imaging it, our symptoms are real. I wish I could hear fro someone who has been on the med for the five years.
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I am in year four. I kept moving, fanning etc. and all the creakiness, hot flashes etc. leveled off after about 6 months and I have been fine ever since (knocking on wood with one hand & typing with the other).
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Fanning, fanning. That's all I seem to do. I leave the house in the morning, it's 50 degrees and I'm dripping wet with the hot flashes. They come and go all day. I feel like perpetual winter is a wonderful thing. Oh, wait - we had that LAST winter!!
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Went on Arimidex January 2010, generic July 2010... After reading Lowrider's post, I went gluten free on August 17, 2010. Do I love bread, cakes, pancakes & cookies? Absolutely! Do I want to be pain free? YES!! So, I deal every day with the want of gluten and how much better I feel without it. But, the gluten free does not do anything for the insomnia and hot flashes...but, to be honest, I agree with Ruthbru, the hot flashes have calmed down to only occasionally at night - and especially if I have some alcohol - which isn't often...And I do have some Ativan if I really can't get to sleep...Second diagnosis was a totally opposite ca so I'm thinking the Arimidex is doing it's job...
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hmm, i'll look into gluten free diet. perhaps it will help.
tx for the info!
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Yes, you have to know your triggers. If you know what is going to cause you problems, you can avoid many of them before they happen. Alcohol warms me up too much too, so is rarely worth it. And I know if I'm going to be in a situation where I will be sitting for a long time.... I have to make sure that I get up and move around regularly or I will get creaky. I never could sleep good so can't blame that one on Arimidex butI have found a hypnosis CD that actually knocks me out at night (that and an occasion Ambien)! And exercise, every day, is what has really helped me the most of anything!
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I have been on Arimidex for a little over nine months and my achy joints have not gotten any better. I was taking Glucosamin Chondroiton (sp?) and that didn't seem to help. I actually just stopped taking it on Sunday to see if really is doing anything. We'll see about that. I haven't tried the gluten free diet yet. My pain is like the rest of yours - after you've been sitting for awhile and then try to get up it takes a while to get moving. When I'm sleeping on my side, the pain in my hip wakes me up (not sure why). I do some form of exercise six days a week. I'd hate to see how bad I would be if I didn't! I'm still hoping with time this will go away. Has anyone been on this for a year and have their side effects lessen?
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don23
it can take several weeks - maybe a few months for the glucosamin to really be effective. Also, have you had you vitamin d blood level checked? I found taking liquid ( teaspon a day) of Nordi Naturals Fish Oil has also helped. It really seems to take a combination of things to get this joint pain, stiffness, muscle weakness under control.
I am aslo one of the people who have really gotten benefit from Aupuncture - and swear by my monthly massage for keeping me moving. Still, the first few steps in the morning as I get out of bed are way NOT graceful
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Caerus -
I did have my Vitamin D level checked last year and it was at 30. I have been taking 2000mg. of D3 daily for about six months. I also take fish oil three times a day.I actually was taking the glucosamine for about a year. Maybe I should try the acupuncture. You're not the only one I've heard it helps. I guess it can't hurt.
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don23, you can really push it: I take 5000 IU of D-3 daily, almost 1600 mg of cod liver oil (make sure it's pharmaceutical grade--free of mercury), and 3 tablets daily of Osteo-B Plus -- all recommended by my alternative medicine doc. My bone density has increased in lower back and stayed constant in other areas. I think some of that's due to exercise. Three months ago I couldn't walk to the mailbox without severe hip pain, now I can walk 20-30 minutes comfortably.
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This morning I noticed that I forgot to take my little white pill last night and the little oblong white pill, too. Lipitor. So I took them both. It will be interesting to see if taking the A in the morning causes a lot of joint and muscle pain. But then the L can cause some of the same SEs!
It's hot and muggy outside. I'm off to walk 3 mi.
Have a wonderful Friday.
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Ive been on arimidex since Feb.2011 and have run the gamut of SE. First was the nausua. It wasnt bad enough that I was loosing my cookies, but enough that I didnt want to eat anything. That only lasted a few weeks.
I think for me the SE come in stages. My hips really hurt and so does my back. But I find that throughout the day, this seems to stop.
My newest SE is severe neck pain that has now gone onto shoulder pain. Ive taken muscle relaxers, and tylenol (cant take alleve or advil) and lots of heat. After a painful week,, I'll be going to my primary to see if PT will help. I know its the arimidex.
I'm also sleepless in NY. Sometimes dont fall asleep until 3am. Its almost like I dread going to bed because I know I'll just be lying there.
I'm also very constipated and havent worked through that at all.
I just keep telling my family that this drug is kicking my ass and please be patient with me.
Emotionally, I think of the arimidex as a strong army working hard against those little cancers that may be going on. And I think its just doing its job. It helps me with putting up with those days I just dont want to do anything at all.
Im also on D3, 5000IU. fishoil, and I take Caltrate 2x a day. All recommended by both my Onco and primary.
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MeJoy, I hope the SEs taper off soon. You're having a miserable time of it. I don't know if it's true, but my dr's NP said those who have the worst SEs can be sure the med is really working. Makes me wonder if it's working for me because I don't have severe SEs. I take the pill at night along with an o/c allergy pill and a statin. I sleep deeply but have very vivid dreams. Sometimes I have muscle cramps during the night but I've learned how to manage them. I also take fish oil, glucosamine/chondroitin, vit B3, multi-vitamin and something else I can't remember! Good luck to all of us on the little white pill.
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As much as I hate my SE I think I am going to keep taking it and deal with whatever. I have been on it since Jan. and SE are still the same so I am just going to learn to live with them .
Nancy
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MeJoy
I agree with you - the SE's seem to come in stages. i went thru a bad time this winter, after I fell and really messed up my knee. I could hardly walk, needed a cane - an that seem to set off pain all over. It is much, much better now, lots of massage, acupunture, enough generic Ben Gay to qualify as a peppermint stick - and now only creaky if I've been sitting for a long time.
I still have what I call the "ouches" when I get out of bed in the morning - but those too ease once I'm in motion. Can't remember what thread it was on, but a WISE woman on BC.org said :"A spoonful of fear helps the medicine go down." I LOVED that - perfectly describes me.
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Ruthbru,
I'm visiting my sister in TX and she has a grocery store called "Sprouts" that has - get this - dark chocolate covered walnuts. I got some and have been nibbling on them for 3 days. I can get my cancer fighting walnuts and dark chocolate at once. We also got organic blueberries and strawberries, some lentils, kale and other good stuff and have been walking, walking, walking.
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Oh yum!!!!! I am drooling just thinking about them. I wonder if they sell them somewhere online?
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I have a large bag of walnuts in the freezer and some really good dark chocolate chips with a high cocoa count. I am thinking I will get them out of the freezer tonite and see if I can fix something up tomorrow...I will report back after the adventure.
Have a good week everyone and hang in there. Walk...walk...walk
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I have to get the 90% cocoa chocolate or I eat it all in one sitting. Sometimes I even get the unsweetened bakers chocolate & then eat it with a calcium chew. No willpower here!
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I've been on Arimadex since Oct, 2010 and I've had a relatively easy time but now I'm getting night sweats. Never had them before but now it's almost every night and I'm soaking the sheets. Any ideas? Thanks and have a joyous day.
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Those of you posting for a while have probably covered depression more than once. But even so, here I am with it... my therapist thinks it might be a stage eventually accepting death (at age 95+, I hope), a reaction to a brush with death, even though I'm doing well physically. It could be the anatrozole, too couldn't it? Hard to describe this numb, down in the dumps, nothing matters feeling; quick to tears, feel like a child who wants to be told what to do, everything feels like pushing uphill with a 100-pound sack on my back.
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marybast,
if I weren't already taking an antidepressant for clinical depression, which I have for years, I'm sure I'd need to be taking one because of the SE's of Arimidex! No doubt about it - depression is a well known SE. After all, we are now tromping around with absolutely NO ESTROGEN in our bodies.
Please see about getting an antidepressant - unlike Tamoxifen, there really is no restriction for any of them with Arimidex. You will feel so, so, so much better. That numb feeling you describe really strikes a chord with me...ouch. Sending you healing wishes...
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Thanks so much, everyone. I'll talk to my PCP about an antidepressant.
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Jo-5. Thanks for your input, I have been looking for someone who actually completed the treatments, including arimidex. My biggest SE is exhaustion. I never considered depression, but it gives me something to think about.
Marybast, hope you are feeling better.
Hang in there ladies!0 -
I started Arimidex about 4 weeks ago. So far I've had an increase in headaches, which I am prone to anyway. My migraines seemed to be very estrogen-triggered and after menopause they because much less frequent and easier to manage when I did get them. I've had to take my "heavy duty" prescription migraine meds twice already in the past month.
I've also been rather weepy the past few days, which is unlike me. My post-surgical course has not been smooth, but I've been pretty upbeat and realistic about things. So, things are either finally getting to me or the loss of my last few drops of estrogen is taking its toll on me.
So far, nothing intolerable. If the headaches and tears are related to the medication, I hope my body can adjust and level this out...
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Hang in there!
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I do think some of the 'crash' is because during 'active' treatment, you are on the fight/never dare let down your guard mode.....so when you are 'done' and have to process everything you've been through and have to figure out how to move forward.....it is really hard.....then add having no estrogen to the mix.....yikes!!!
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Ladies,
REPORT FROM THE GREAT NORTHWEST
I took all the dark chocolate chips,chunks of bars and threw in leftover semisweet chips and added a 1/2 teaspoon of veg. oil ...melted them slowly in a double boiler ...threw in walnuts that I had broken up with my hands. Dropped by spoonfulls onto parchment paper. I now have nut clusters!!! Very good and very easy.
These will have to be hidden once Hockey season starts up again. The boys will love them.
Sweet Dreams
Teresa
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