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Arimidex

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Comments

  • PackerFan
    PackerFan Member Posts: 4
    edited June 2009

    Thanks for the info.  I will definitely try the Glucosamine.  I hate feeling like I can't move.

    Have to walk in the Relay for Life tonight and right now I'm having a hard time making it from the living room to the kitchen.  Could the pain between my upper shoulder blades in my back be side effect from radiation as well?  I'm on #14 of 33, so wondering if that isn't causing some of the pain.

  • nelia48
    nelia48 Member Posts: 42
    edited June 2009

    PackerFan, if you are into radiation, a lot of your pain could be from that.  The chest pain and the pain in the shoulder blades are probably from the radiation.  There were a few times I had pain so bad in my chest that I thought I was having a heart attack.  Then, sometimes, it just felt like a hot knife in my chest all the way to the back.  My primary care phy. said that the radiation sometimes causes the esophogus and/or stomach to act up, and to take the OTC prilocec to help with that.  And by golly, it did help a lot. 

    So until you are off of radiation for about 6 weeks, you can expect a lot of aches and pains, tiredness, and even some depressed feelings.  It's not all the Arimidex!

  • ShariPDX
    ShariPDX Member Posts: 7
    edited June 2009

    Me too.  I switched to Aromasin for about a year, but it's no different.  My insurance "prefers" Arimidex, so I'm back on that.  Generics have gotten the 1st approval from the gov., so they will be cheaper in the not too distant future.  Meanwhile, I've been living on ibuprophen, but I do like your idea of taking Arimidex in the morning.  I used to before, but switched to bedtime because I forget things in the morning.  Maybe this will make sleep better.

  • DENTHOMAS
    DENTHOMAS Member Posts: 27
    edited June 2009

    I don't seem to have any bad se with Arimidex.  I've been on it for four months now. My hips ache in the morning but my exercise class has helped with that. The cost concerns me. I sure hope they get the generic approved soon.  It's available in Canada.

  • rgiuff
    rgiuff Member Posts: 339
    edited June 2009

    For those of you who have been on Arimidex or other AIs for awhile with the complete estrogen deprivation it causes to the body, do you feel like it's aged your appearance more rapidly?  Besides the aching joints and tiredness, which seem very common among many of you, I was also wondering if you've noticed more sagging skin or drier hair. 

  • ShariPDX
    ShariPDX Member Posts: 7
    edited June 2009

    Oh YES.  I've aged about 10 years in the last 3.  My skin is thin and wrinkly, my gums hurt, my hair is very dry (not to mention the gray thing), I ache all over and walk around like I'm 90.  I've also gained about 10-15 lbs that I don't need.

    I bought an elliptical machine to "work out" on to try to repair some of the damage, but it's too soon to tell.  I also snoor since I've been on these meds and I never did that before. Undecided

    I'm not trying to blame these meds for everything, but my physical life has changed more abruptly since these meds.  The boobie loss had far less impact.

  • rgiuff
    rgiuff Member Posts: 339
    edited June 2009

    Shari, were you pre or post menopausal when you were diagnosed?  I ask because I wonder if there's  any way any of these effects could be due to the natural aging process that comes with menopause.  Or do you think the medication is completely to blame for this?  And do you think it's worth all the misery? (I ask this not knowing how bad your cancer was). I am on tamoxifen and worry about the long term side effects but don't think I'd ever agree to do an AI because I don't like the idea of complete estrogen deprivation.  I have some annoying side effects with the tamoxifen but sometimes wonder if I would be having them anyway because I started having menopausal symptoms even before the breast cancer.

  • nelia48
    nelia48 Member Posts: 42
    edited June 2009

    I also feel a lot older than I was!  But chemo was just terrible for me, and I felt that my face "fell" even then.  I have pictures to prove it!  I remember getting up one day after chemo #3, looked in the mirror and said, "My God, My face fell!!!!"  Everyone laughed, but it was true.

    I've noticed that my fat is very flabby now.  It blubbers all over the place.  My knees are killing me and it's hard to get out of a chair.  I tire quickly, but I think it's because I can't sleep at night.

    My hair is squirrel grey, I have a lot of facial hair, and I'm always hungry!

  • AussieSheila
    AussieSheila Member Posts: 439
    edited June 2009

    Before my dx last Nov, I had such pain from my 'arthritis' that I bought 2 big drums of glucosamine/chondroitin and fish oil and faithfully took them while waiting for the pain to subside.  When the pain was particularly bad, I would take one aspirin twice a day.  This seemed to work for a while but one day it didn't--so I switched to Ibuprofen and the pain would disappear for 2-3 days.  Until once again it didn't and, by then, I could actually hear my bones clunking, like a wooden leg, as I walked.  I thought I was the only one who could hear it, like Tinnitus, until one day my daughter said that she could hear it too.  I have yet to find out which particular bone or joint is the cause of the noise. 

    During this time, I also lost 15kgs for no apparent reason and have not put it back on since.  I now have wrinkles and flabby 'bits' and 'lizard' skin on hands and arms.  I need spakfilla for my face instead of make-up and, even after buying all new stuff for my sons wedding last month, I still look like a plucked chook (chicken.)

    By the time I found a new GP--old one had retired--it was 2months later and I could hardly get into our 4wd truck due to not being able to bend at the hips.  This included not being able to climb steps--14 up,14 down--to get in and out of the house.  I was using two walking sticks all the time and the thought of not being able to do basic things like shower and toilet without help really threw me.

    I was so surprised that I didn't have arthritis, I kind of let the real dx float over me for a while, yeah--I know--deep denial.  From the day of my first consult with the Onc, the pain started to recede, so that by Christmas 08, I had done a full spring clean and caught up with a lot 'stuff' that had slipped by for most of that year.  Although taking Arimidex and Bonefos for the last 7mths, I find now that the pain is nearly worse than before, even though my tumour markers have dropped and my bone mets are narrowing.  The only reason left for the pain is arthritis--according to my Onc, caused by the Arimidex! So basically, I am now suffering from what I thought I had originally, plus major memory defficiency and all of the above.

    Sheila.

    P.S.  I had no radiation during primary tx, just chemo and Tamoxifen, and have the pain in back/shoulders and ribs too.

     

  • vivre
    vivre Member Posts: 881
    edited June 2009

    Rose, I think too often the Arimidex symtoms are blamed on menopause. Well I am 55, 3 years into menopause, 2 years passed bc and I have not felt this good in years. I took a 10 mile bike ride yesterday, and nothing aches.  I ride about 40 miles a week, walk about 10 and also do lots of strenght training exercises. I refused arimidex and am very happy I chose the natural alternatives. My skin looks great and feel soft, from the omega 3, and I have no fatique or sluggishness like I use to get when I was consuming sugar. My tests show my estrogen levels have been lowered considerably with weight loss, but even so, I have no hot flashes. As we age, our bodies do not metabolize nutrients as well so we need to supplement. When we do, we can stay healthier and more vital. I am proof.

  • unique
    unique Member Posts: 209
    edited June 2009

    Hi vivre and everybody ~

    I've been on Arimidex for two months now, and it's going okay. My worst SEs are waking up every morning at around 5am, and my right shoulder pain. But I had that before I started Arimidex, so I don't think the Arimidex is causing it. Oh, and sometimes I feel hot, and sometimes my hands are numb, but if I wiggle my fingers it goes away. Exercise and lots of water helps. I take a multivitamin and Omega 3 fatty acids plus other things. I'm irritable, but I think that's not getting any worse.

    I had menopause from 03-06 so I will know if the Arimidex causes symptoms. And I will recognise them!

    I do take it in the morning, and I don't have trouble falling asleep, but it doesn't seem like a real sound sleep, I'm more tired, and then at 5am the eyes pop open. I can get back to a light sleep though.

    I take Paxil and Benadryl in the evenings, though, so that may be helping my sleep.

    Yes, I feel like I look older. I got really bloated during chemo and that has gone off, altho I haven't lost weight really. That skin just floats in rolls LOL.

  • rgiuff
    rgiuff Member Posts: 339
    edited June 2009

    Vivre,  it's great to hear about how well you are doing.  So you had already gone through menopause when your BC was diagnosed?  Did you ever have any hot flashes?  And would you say that you are looking and doing better than previously in regards to appearance and other menopause symptoms?  Also, I presume you have not had any reocurrances.  If so, that is great inspiration for me, as I tend to get very down, thinking it's all downhill from here on in in regards to all these menopausal symptoms.  And I will get off my tamox soon and refuse an AI, especially if I read about more people like you, who are doing it  the natural way.

  • vivre
    vivre Member Posts: 881
    edited June 2009

    Rose, my hormones were a mess before menopause, heavy periods, and I would sweat nonstop. I think rads really zapped my thyroid because I no longer sweat, even when I workout. But I definitely feel that I look better than before. I even had a women jog behind me in the park one day and complement me on my hair. But I admit, I will not give up my hair dye. I have been gray since I was young. I know it is so unhealthy, but I figure we have to do a little to look better. I found that the more books I read about good health, and the more changes I made in my lifestyle, the less I worried about a recurrance. I have such a huge list of things I use to do that I now know were bad for my health. So making all these changes has been very empowering. And I feel so incredible. Everyone tells me I look a lot younger, but for me it is enough that I feel younger.

    I use to play a lot of volleyball and sometimes my knees would hurt. Now that I am doing a lot of free weights, I can bike for miles and my knees are fine. Move it or lose it as they say.

  • xmasprops
    xmasprops Member Posts: 2
    edited June 2009

    Hey Curlylocks....what is the drug from Canada for....sleeping?  Is it addictive?  narcotic?

    I do not sleep more than one hour or two at the most.  Did u stop taking it?

    I've had 3 lumpectomies and one year late a lump came back...long story short I ended up in Mexico with a doctor who gave me chelation 5 times in one week and two shots of living bovine cells and my lump dissolved.....miraculously.....so I am up for drugs from other countries.  I am taking arimedix and do not like the hot flashes that go with it.  Have u tried aromosin?

    Thanks for posting your info.

    smiles

    xmasprops

  • PackerFan
    PackerFan Member Posts: 4
    edited July 2009

    Hi 2tzus,

       I checked out the glucosamine/chondritin today at Walgreen's and was confused by all the types and doses they had.  I talked to one of the pharmacists who really wasn't able to answer too many of my questions.  What type do you take, and how many per day?  I also talked to my oncologist yesterday and he was able to give me some pain meds for the pain in my back, shoulders and chest, though I only want to use them if I absolutely have to.  He suggested lifting 3 lb weights and walking right now, which I am trying to do daily.  Anyone have any other suggestions.  I am also now experiencing bouts of sadness and tears, for which I have no explanation....frustrating to both my husband and me.  Hot flashes- or power surges - are coming quite frequently.  I am, however, sleeping fairly well with Tylenol P.M.  I am so happy to have found this site and have people who actually know what I'm going through or can help explain why I'm feeling the way I am.  Thanks to all of you for being here for me.

  • patoo
    patoo Member Posts: 5,243
    edited July 2009

    PackerFan, I take Triple Flex by Nature Made - 2 caplets/day gives glucosamine 1500 mg, chondroitin 800 mg, MSM 750 mg.   Have had great results with hip pain and my wrists have also been feeling better since I went back to taking them daily (I had stopped taking them regularly before Arimidex but have had to start again because of it).

    The tears and sadness is a se - depression.  If it gets too bad you may want to look into antidepressents - I'm certain there are natural remedies.  Actually exercise works to alleviate depression.

    I had finished hot flashes but with Arimidex they are back.  Not like before though, now maybe once a day so it's been manageable.

    I forgot to take my pill Monday night and again Tuesday morning so all day Tuesday at work I was feeling headachy and my joints were stiff.  Took it las night and today I'm feeling fine.  Amazing that only one day without it could have an affect.

  • hollyann
    hollyann Member Posts: 279
    edited July 2009

    Oh wow  Patoo thanks for the info on the Triple Flex..I will try that....How long before you felt any results?...........My hot flashes are pretty much gone too.....Just occasionally at night if my sugar drops too much at night.........Great big hugs to all my Arimidex sisters........

  • patoo
    patoo Member Posts: 5,243
    edited July 2009

    Glucosamine takes up to 4 weeks to really notice any difference.  Bummer I know but worth the wait. 

    Many years ago (at least 25; I'm now 60yo) my orthopedic doc said I would eventually need a new hip but to try glucosamine.  After suffering for awhile, I started them and took it for years with great relief.  Then one day stopped taking them, no reason just stopped, and for several years still had no pain.  Only since taking the Arimidex have I started feeling pangs so I decided to take them again. 

    Hope you have as good results.

  • sobx
    sobx Member Posts: 108
    edited July 2009

    After trying 3 different meds I am back on Arimidex. The others made me ache way too much and hot flashes galore. So Arimidex was the less affective SE's  than the others so I went back on it and guess I'm stuck with it for years to come. I hate taking meds. I take it in the mornings and haven't had trouble sleeping. I get up at least twice a night from all of the water I drink. With me working different shifts I can't stop drinking at 8 or so. Sometimes I still have 3 hours of work to do. Sometimes I have to take Ibuprofen to get to sleep. My legs ache really bad and I can't get comfortable. Did notice that  when I was moving furniture around yesterday I had trouble getting up and down off of the floor. felt like I was around 90. I'm a sugar junkie so trying to cut down on that too. Heading over to the beach to chill for a few hours. Ned the vitamins from that!! Joy

  • thegoodfight
    thegoodfight Member Posts: 124
    edited July 2009
    It has just occured to me that we are all spending a lot of money on over the counter supplements and vitamins.  I wanted to mention, in case some of  you are not aware, if you are "lucky" enough to have enough out of pocket expenses to do a medical claim on your income tax, you can include all over the counter drug realted items.  SAVE ALL  YOUR RECEIPTS, just in case.  You can claim so much once you reach the minimum.  Besides the obvious things like the gloucosamine, even things like bandaids, cold remedies, etc.   Who knew.  I learned this with my 2008 taxes because between bc and dental I was way over the limit and was able to make a claim..............lucky me................LOL
  • Curlylocks
    Curlylocks Member Posts: 61
    edited July 2009

    xmasprops,

     I am taking Immovane (brand name is Zopiclone) for 3 years now since starting Armidex due to insomnia.  I am still taking it and have not upped my dose from one tablet each night.  It is not a narcotic and does not belong to the benzo family but it is addictive if taken every night.  My doctor said sleep was more important and I agree.

    I now sleep about 5 hours straight some nights, wake up and then most of the time can go back to sleep.  Keeping the room cool is important to avoid hotflashes.

    I have not tried Aromosin.

    Michele

  • wblibrary
    wblibrary Member Posts: 66
    edited July 2009

    As I posted before, my oncologist took me off Arimidex on a trial basis to see what side effects would disappear.  I've been off a week now and I feel 10 times better already!  No aches and pains and I'm sleeping like a baby.  I would like to hear from those who have given up Arimidex for another drug.  I have till the 17th to decide what I want to do. 

  • Unknown
    Unknown
    edited July 2009

    Hey wblibrary...I've been on Arimidex for 3 1/2 months now and will be heading to my onc to discuss going off the Arimidex.  Since being on this drug I have had awful fatigue, absolutely NO libido and some on and off again bone pain.  For me quality of life is VERY important and going on additional drugs to combat the fatigue and the libido issue is not what I want.  Going to ask my onc if he can tell me what my absolute risk (not relative risk) is if I do not take Arimidex or a similar drug.  Will talk to him about estrogen level tests as well.  We shall see.

  • sobx
    sobx Member Posts: 108
    edited July 2009

    Wblilrary - I have tried three different drugs and have gone back to arimidex. The achiness will get better I hope. Hot flashes were way to much with Femara and arominson I couldn't sleep. I guess you can try and then pick like I did. Which ever one feels the best. I only tried each one for about a month and then took a week off between each one. I sleep a few hours and wake and then go back to sleep. Do keep your bedroom cool. But I can't tell hot flashes from just plan heat now. It has been in the upper 80's and lower 90's for over a week now. Lows at night in the 70's. When I went home from work at 11 pm it was still 84. Supppose to have a breeze and rain by Sunday night. That will make it very muggy down here. The ocean is 85.

  • swimangel72
    swimangel72 Member Posts: 142
    edited July 2009

    Had a sleepless night last night - my bone pain from Arimidex kept me up - tossing and turning, even my good 'ol Arthritis-strength Tylenol didn't help. Finally I must have fallen asleep abou 6am and didn't waken until 11:30 this morning - yikes! I felt like I lost half the day, never mind that we have my elderly in-laws staying over and I felt like such a slug!

    The bone pain is getting increasingly worse - these rainy days aren't helping. I spoke with my brother-in-law (a cardiologist) and asked him if he thought it would be OK if I stopped Arimidex completely. He thought since my tumor was so small and such a low grade - and since it was Her2+++ (even though the tumor was 96% ER positive) that I am at a very low risk for recurrence. I'm going to ask my oncologist next time I see him what his thoughts are - if I can lose at least 30 pounds, I think that would decrease my risk enough that I won't need the Arimidex. Quality of life is so important - I need to get my energy level back up so I can swim harder and get back in shape..........at this rate, it's a Catch-22 - my bones and joints hurt too much to do much more than I'm doing now and I'm gaining weight  not losing! Sigh...........I know many women on the Alternative threads gave up on Arimidex - just wondering what everyone else thinks?? Undecided

  • wblibrary
    wblibrary Member Posts: 66
    edited July 2009

    My oncologist told me by not taking the Arimidex (or another drug), I had a 30% increase in my chance of recurrence.   I haven't heard from anyone that is on an estrogen blocker who doesn't have the bone pain, stiffness, depression, etc.  I also keep hearing that Arimidex has the least amount of side effects.   I guess I'm stuck with this stuff for the next 5 years.  I agree with the quality of life arguement, but I also don't want to have to worry about whether I'm around for the next 5 years!  My son and his wife just had twins and I want to be around to watch them grow into wonderful and healthy adults!  So I guess I've made up my mind.  When my oncologist calls on the 17th - I'm going back on the Arimidex. 

  • DENTHOMAS
    DENTHOMAS Member Posts: 27
    edited July 2009

    I've been on Arimidex since Feb.  Other than some hot flashes in the evening I haven't had any bad side effects. I do take Tylenol PM at bedtime and sleep through until morning.  I do go to exercise class 3 x a week so maybe that helps. I had a hysterectomy in 1990 and was on estrogen patches since 1987.  My downfall for the BC I guess.

  • swimangel72
    swimangel72 Member Posts: 142
    edited July 2009
    I tried Tylenol PM - it dries out my nasal passages too much and I end up with a headache in the morning. Maybe I'll sleep better tonight after my 3/4 mile swim today. I usually swim every other day - and the exercise does help - but the longer I'm on Arimidex, I'm finding the aches and pains are increasing, sigh.....I've been on Arimidex since July of 08. Hoping that it doesn't cause me any more pain than I'm already experiencing. Frown
  • unique
    unique Member Posts: 209
    edited July 2009

    Hi galz ~

    Just checking in - on my 5th sample pack and so far so good. Except for this and that. I really need to go to bed within about an hour of taking my Paxil and Benadryl of the night or it's hard to get to sleep. Prolly doesn't help I've been drinking a little more coffee. (Since I've felt tired.) So back to my better habit of one cup in the morning and that's it for the day. Up until 3am ...

    Also arm pain on the right, this started up during radiation, before I started the Arimidex, wonder why but it sometimes aches dolefully during the day, and at night I'm always kinda aware of it. My sleep is constant, but lighter and less restful than it was. Haven't used Tylenol for it, it's not that bad.

    Swimming now that it's warm, and the exercise is WONDERFUL. Still doing WiiFIT regularly, well about 3 X a week when not swimming. The yoga is great. Feel that the mast scar tissue is trying to tighten up and I'm not letting it.

    Got the Lands End suit here http://www.landsend.com/pp/AlloverControlSlenderTunicSwimsuit~4235_593.html?bcc=y&action=order_more&sku_0=::RIB&CM_MERCH=IDX_00002__0000000139&origin=index and it is great, just great, except for those thinking of getting one it does have some stiffener under the armpits I may remove. A little itchy. Best part is the mast pockets and the cups that stand up by themselves! I decided I could just use the bath poufy after all. Prolly could just go with nothing and no one would notice.

    Feeling much less euphoric, prolly due to the Arimidex, struggling a bit with my sense of well being. Worry about "retirement" as I haven't saved enough. Well, I have hung on to the accounts my husband left me but worry about going back to work full time and the diciness of that. Home business not making enough at this point.

    Doing less beading and mousing on left hopefully to help the right arm recover.

  • my3girls
    my3girls Member Posts: 1,291
    edited July 2009

    Wblibrary....I have been off of Arimidex for about 2 months...and within a few weeks...I felt SO much better!  The aches and pains were less..headaches gone...and I LOST WEIGHT!! I was without an AI for a month..then my oc put me on Aromasin...well for about 3 weeks..no s/e..then they hit.  I am SO tired! My muscles feel limp...and I can't do my normal activity which is running.  I make it into work daily..but it's a chore!  This has been going on now for about 1 week.  So as of today...I am stopping it.  I can't work and LIVE with no energy and an "out of it" feeling. It's horrible.  I know possibly the s/e will lesten in time..but until then...what do I do?  I have to work...at home and in my job.

    Swimangel...I am with you...quality of life is so important. I am going to talk with my pharmacist..he is very knowledgeable about alternatives' to drugs.

    I see my oc next week. I may just go back on tamox.  That drug agreed with me the best.

    xoxo

    Lisa

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