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Arimidex - Coping with the SE's

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Comments

  • ruthbru
    ruthbru Member Posts: 47,791

    I don't think 1/2 a pill twice a day, or the whole pill once a day, will help you, or hurt you. It stays in your system for a certain amount of time either way.

  • Medigal
    Medigal Member Posts: 183

    ruthbru:  I am no pharmacist but I have a different theory about taking 1/2 pill twice a day rather than a whole pill once.  It's true medication stays in our system for so many hours but it would seem 1/2 pill is only going to give you 1/2 of the strength you might need and when you take the other 1/2 it will be hours behind the first 1/2 so how does that help you if you need the full amount in your body for 24 hours.  It just doesn't make sense in my mine but I'm not saying your opinion is not correct. I  would only take 1/2 of a pill to make sure I didn't get the full strength of the pill combining in my body to give me stronger side effects.  That is why if I have to take Klonopin, I was told never to take the whole pill at one time but to divide it up in halves so I would not get hit with the full potency and never get addicted to it. 

  • nativemainer
    nativemainer Member Posts: 7,945

    According to the prescribing information on Arimidex, the half-life is 2 days, and steady state blood levels are reached after 7 days of daily dosing.  This means that you will get the full dose of the arimidex in your blood stream if you take it once a day or half a pill twice a day.  The only difference is that the peak (the highest blood level concentration) won't be quite as high taking half pills twice a day than taking 1 pill daily, and the blood levels will increase more gradually over the first week.  After the first week, it won't make any difference taking it either way. 

    Giving a daily medication in more than one dose is often used to decrease the intensity or liklihood of side effects, since most side effects are directly related to the peak blood level of a drug.  A lower peak blood level often results in less intense side effects or sometimes even eliminates a side effect like nausea.  I'm not sure how much effect this approach would have on a side effect like hot flashes, since that is a result of the hormone imbalance that arimidex is given to create in our bodies.  Then again, we know very  little about what influences the onset and intensity of hot flashes.  

  • pj12
    pj12 Member Posts: 18,108

    Has anyone taken a short break from "A"? I am experiencing some weird neurological symptoms and would like to  know Anastrozole is not in play. I don't want to stop A.... just rule it in or out.

    If you took a break, how long? And what happened?

    Thanks,

    pam 

  • BocaCiegaBabe
    BocaCiegaBabe Member Posts: 12

    I'm on a one month break, after being on it for a month.  Onc wants to see if my se were only from Arimidex, or combination of that and stopping HRT.

    She mentioned, briefly, taking only half a pill perhaps, not the full pill every day.  I wrote about this possibility a couple of pages back here, wondering if  anyone else was doing that.  Now I see that Jessamine, as well as Painterly, are both on half pill doses.  I'm going to look into that further.  Certainly we weren't all at the same estrogen level initially, nor are our body types the same.  Maybe we don't all need a full pill?  I'm willing to do whatever to stop any more of this disease, but I'd also like to be able to have some sort of a sex life too, (to be absolutelly frank) and I'll tell you, if things stayed as they were or got worse, that would come to a grinding halt!

    I'm 67.  My tumor was a very slow grower.  Who knows if it was fueled initially by HRT taken earlier on.  I'd been weaning myself off it, and for the past couple of years, had only been taking two of those pills/wk.  It was just enough to keep "all systems go", so to speak. Blush Blush...

    I go back to her Tuesday and look forward to exploring the 1/2 pill more fully.  As I mentioned earlier, I have a family history of stroke, I have high blood pressure, and am reluctant to go to Tamoxifen because of that..

  • paamboli
    paamboli Member Posts: 43

    Dear pj12345,

    "Weird neurological symptoms" probably ought to be checked out by a neurologist. just to be on the safe side. That way you will know if you are having an odd reaction to the A or if something else is going on.

    paamboli

  • Marie2
    Marie2 Member Posts: 11
    I am on my 3rd week of Anastrozole and my hot flushes have turned into hot flashes. I am getting head aches usually at night but find an asprin helps so far. Today I was finding it a bit difficult to breath. It was just like I could not get enough air in my breaths. Has anyone else experienced this and if so can I expect it to get worse before it gets better? Does it get better? How long is it before things settle down and become bearable or is this pretty much it for the next 5 years? My onc just perscribed Anastrozole and scheduled my next appointment for Nov 29. I start radiation tomorrow, but how do I know if Anastrozole is having an adverse affect that my body won't be able to handle? Aren't you supposed to get blood tests to see how your body is handling it? Is it normal to wait 3 months before you get any tests? I just not sure what to expect, what to just chalk up to SE and what to actually call the doctor about. Undecided
  • Julia257
    Julia257 Member Posts: 203

    Marie, difficulty breathing IMHO is a symptom never to be ignored.  I would advise you to call your Oncologist and bring it to their attention today before radiation.  Some doctors depend greatly on blood tests like tumor markers or estrogen levels, some do not.  My surgeon said doctors put more weight on symptoms and physical exam.  When I started Arimidex 3 months ago, my onc said see you in three months.  When I asked what blood test will be done, he said, basic chemistry panel and cbc.  Best of luck to you!

  • Marie2
    Marie2 Member Posts: 11
    Thanks Julia, I will do that. I depend so much on you ladies and this thread to guide me in what to expect and what to ask the doctor. I was one of the fortunate ones who never had any aches and pains, was very active and rarely saw a doctor, until now. So if they don't say anything to me I just go on my way until my next appointment and accept what ever happens as SE's. I also find it odd now reading this threat, that he never did a bone density test, unless he could tell from blood work or the bone scan he ordered. But I am wondering if he even has a baseline to go by at my scheduled appointment. He just told me to take more calcium, since I was already taking it and to add vitamin D. I will call today before rads thanks for the advise.  I love you guys you are life savers.  Cool
  • don23
    don23 Member Posts: 213

    Marie2 - I would definitely check with your doc about the breathing issues. Ever since I have started on this journey I do not hesitate to call the doctor when I think something is not right. It is better to call and get peace of mind than to worry about it needlessly. Before I started Arimidex I had a DEXA scan done as a baseline (I never had one before and I am 52 years old). I don't know how often I will be getting that done. I would think you would get one a year but I don't know. I just started on Arimidex in July (after being on Tamoxifen for 11 months). I haven't had any real bad SE's. Just some pain in my joints that is bearable and a slight weight gain. I try to stay active and watch my diet.

  • MTG
    MTG Member Posts: 337

    Marie2 -  Glad you're checking with onc re: breathing issues; always better to err on the side of caution.

    As for bone density scans, my onc hasn't even mentioned one yet however I simply asked my PCP with whom I've got a really good relationship, to give me an rx for one and now I've got the results in my files. If and when my onc wants one, I'll show him the base line. In the meantime, I'm comfortable that I recorded my pre-Arimidex baseline

    Most importantly - good luck with Rads today ! One day closer to being done.

  • Lowrider54
    Lowrider54 Member Posts: 333

    Weird neurological symtoms...yep, did have them checked out by a neurologist...ends up that with back issues - both mets and disc degeneration - the muscles are pulling down and causing some nerve impingement at the neck and shoulders creating numb arms and hands - a simple set of isometric exercises has all but eliminated the issue.  It was pretty scarey until I understood the why and then how to alleviate it. 

    Oh, on the gluten...I had read someplace that it can aggravate joint pain so I thought to give it a try and two things happened - the joint pain lessened quite markedly and I started losing weight - the Bisquick pancake mix was good, better consistancy than the other brand I tried.

  • Marie2
    Marie2 Member Posts: 11

    Well I called my onc today before rads and I must say I am extremely disappointed. I mentioned to the nurse about my breathing and she said she has never heard of anyone having those SE's. She put me on hold and caught the onc as he was stepping out from another patient and asked him. When she got on the phone she told me he said that it wasn't a SE of Arimidex and to call my regular doctor. I told her that from what I read online that it was noted as a serious SE and to contact your doctor. She again advised me to call the family doctor. Thank God for a sister-in-law that was a nurse and when I called her and explained my symptoms she indicated that it wasn't really shortness of breath. It sounded like more a touch of asthma or bronchitis. She said if it were shortness of breath I would be huffing and puffing which I am not.  I did not call the family doctor as she said he would probably send me in for chest x-rays and I already had some done a couple of weeks ago and really did not want to have any more radiation. I went to my 1st radiation treatment today and it went just fine.

     MTG I used the ACV on the wash cloth and laid it on under my shirt as I drove home, then lotioned up, and will do the same tomorrow. Thanks for the advise

     I felt better after the treatment was over and could breath much better, so I am thinking it may have just been nerves. I am going to wait and see what happens in the next couple of days and you can be sure when I go back to my onc I will be telling him of his mistake and that shortness of breath IS a side effect and one for which you are to contact your doctor immediately. I will even bring the paper that came with the meds. As I said I am very disappointed, he is one of the best onc's around but now I am not so sure. My sister-in-law said that doctors are human and can ,and do, make mistakes esp if they are busy with another patient. She also said because of my age and the blood work they took, if it showed my calcium levels as being good then he would not have necessarily needed to do a bone density scan, that they weren't really needed as a baseline because he would be going by what the norm is for women my age. If it is lower than that, then he would look into it further. Anyway she did put my mind at ease and I am going to try and forgive my doctor....but it will always be in the back of my mind. I am so afraid I am going to turn into a hypochondriac.   Yell

  • TokyoSing
    TokyoSing Member Posts: 27

    Sunflowers, thanks for the good advice on gluten free diets.  I have contacted  my onc and will see a nutritionist at Dana Farber when I am there next. In the meantime, I will start cutting gluten out of my diet to see if the joints feel better.    I also need to consult the nutritionist on my Vit D levels.  After 6 months of 1000 IU's of D3 a day, I am barely at 32.

  • Julia257
    Julia257 Member Posts: 203

    Marie, I am so glad you're breathing better, no thanks to that onc of yours.  He thinks he's a union worker, like the couch carriers don't touch the chairs.  I personally think that reaction (take that prob somewhere else!) is unforgiveable.  I think human error is over-used when it comes to medical mistakes, what about human responsibility.  I also have at least two issues of the unforgiveable nature with my onc, who purportedly is "the best there is" ... he didn't question my malignant lump, he said it was nothing this of course was before Mx and biopsy, good thing I insisted.  I'm glad it went well with your first rad.  Hope it's the same throughout!

    Lowrider, so good to know you had such great results from eliminating gluten and that the exercises did the trick.  Continued success!

  • somanywomen
    somanywomen Member Posts: 82

    Rocket and others with lingering pain.....Last week we were discussing the arm/shoulder pain since BC, thinking there might be an Arimidex link...I found some interesting information about "POST BREAST THERAPY PAIN SYNDROME" (PBTPS) on www.cancersupportcare.com/neuropathicpain....I am thinking now that my left side pain, esp, the arm pain may be more related to my surgery...Although my surgeon just passes off any such possibility that my pain is from "HIS" surgery.......Sorry if this is long..

    Post Breast Therapy Pain Syndrome (PBTPS) is an underreported condition believed to affect 10- 30% of women who have undergone surgical procedures for breast cancer. 1 While prior studies have looked at post mastectomy (PMPS) or post axillary dissection pain syndromes (PADS), recent articles have reported a more encompassing condition which we term PBSPS. PBSPS not only results from injury to nerves during surgery; it is now believed that radiation and chemotherapy play a role in aggravating the condition. 2 Because of its multivariate causes, PBSPS encompasses many different symptoms which can range from mild to debilitating in severity: chest and upper arm pain, numbness, edema, continuous aching and burning associated with chronic dysesthesia, allodynia (hypersensitivity to pain) and phantom breast tactile sensation/pain. The onset of symptoms can range from directly following breast surgery: mastectomy, axillary dissection, or other invasive procedure, to 6 months after. 3 Symptoms generally persist beyond the normal 3 month healing period.

    Quality of life issues surrounding women diagnosed with PBTPS have prompted us to look at this recently acknowledged condition. Forty percent of women diagnosed with PBSPS reported increased pain with movement, leading to arm restriction and frozen shoulder syndrome. 1 Over 50% of women experience pain during their daily chores, and over half reported sleep disturbances.

  • painterly
    painterly Member Posts: 266

    Somanywomen:

    Interesting article. I got frozen shoulder from the radiation and had physiotherapy to regain mobility. My radiologist denied that I would get frozen shoulder from treatment but my physio said that she gets many women with the same complaint and if the radiologist would give women some simple exercises to do during radiation, frozen shoulder would not happen.

    Glenis

  • somanywomen
    somanywomen Member Posts: 82

    In my case, my surgeon will blame rads, my onco will blame surgery, my rads blames my dog (lol)....They seem to let their egos get in the way of helping and listening, so we just keep on trying on our own and with the help of our BC friends to get answers that we truly deserve and should have been warned about.....

  • Medigal
    Medigal Member Posts: 183

    Would you believe when I asked my Onc's medical assist. if Arimidex had an SE of causing depression she said she never heard of that one and it must be caused by something else!  I guess they are too busy to read the information that comes with the meds they prescribe.  If depression isn't a side effect then why did my first Onc give me an RX for an anti-depressant at the same time he gave me the Arimidex RX.?  Gee, he must have had time to actually read about the drug!  Problem was he didn't take time to explain things to me and I tore up the anti-depressant RX thinking he gave it to me by mistake! 

  • KMQW2010
    KMQW2010 Member Posts: 5

    Thank you for all your information and thoughts.  We are still doing research.  Just trying to feel like myself again.  I asked the Dr. If I could not take anything for three months, he said typically they want us to get going on the drug as soon as possible.   I just wanted to get some weight off that chemo gave me (steriods) and be myself.  Any thoughts on when a person "has" to start the drug treatments?  Thanks again.

  • painterly
    painterly Member Posts: 266

    KMQW2010:

    My onc. told me the A has to be started within the 3 months of ending chemo, so I opted for the very last week of the 3 month period, so that I would know which SE belonged to which drug! (But then certain SE's can show up many months later and then you can't always tell!)

    Glenis

  • MTG
    MTG Member Posts: 337

    TokyoSing - I took 2000IU of D3 for 6 months with absolutely NO CHANGE. My PCP suggested that I increase it to 5,000 IU daily. Well, after 6 months of that, I've gone from 38.6 to 65!

    That, plus dramatically reducing gluten (basically no breads,cereals and pasta except occassionally if I'm eating out), eating lots of antiinflammatory foods, and being really good about supplements - D3, fish oil, CoQ10, glucosamine & tumeric - and my joint pain, tirednes and everything else have been really good.

  • Annabella58
    Annabella58 Member Posts: 916

    just wanted to chime in...I finished 6 months of chemo in August, 2008, and did not being A til january 2009. 

    My onc had no issues with that at all.

  • paamboli
    paamboli Member Posts: 43

    MTG and others on the gluten-free path;

    Nature's Path makes  fairly decent gluten-free corn flakes, and Erewhon/Envirokids has frosted flakes, which I intend to try soon. Why on earth does gluten-free mean twice the price? The latest trend in California is to diagnose everyone with impending, suspected, or incipient celiac, so we are getting more and more gluten-free products in the organic markets.

    paamboli 

  • sue-61
    sue-61 Member Posts: 262

    ARIMIDEX SIDE EFFECTS, right from the astra zeneca site. (NOTE shortness of breath)

    , the most common side effects seen with ARIMIDEX versus tamoxifen include hot flashes, nausea, decreased energy and weakness, pain, back pain, headache, bone pain, increased cough, shortness of breath, sore throat, and swelling of arms and legs. Joint pain/stiffness has been reported in association with the use of ARIMIDEX.

  • Rocket
    Rocket Member Posts: 910

    Somanywomen,

    Thanks for the article.  I have suffered with PMPS (post mastectomy pain syndrome) since my bi-lat mast.  My right arm suffered nerve damage and most of the pain was felt along the back of my upper arm and radiating into my elbow.  It felt like it was severely burned and as if a blood pressure cuff had been strapped to it and pumped to 200 and left there for 24 hours.  Gabapentin was finally prescribed and I take 500 mg every eight hours.  It has helped tremendously with tthe nerve pain, but has done nothing for the other shoulder and arm pain. 

    The pain that I now have in my shoulders isn't like the nerve pain that I have experienced.  I have gone through chemo and rads and during rads I was also put on Arimidex.  Three months after taking Arimidex, the joint pain began - left hip, knees and shoulders as well as my upper arms.  The shoulder and arm pain is extremely bad at night.  I take the Arimidex at night and haven't tried taking it in the morning.  I have not been sleeping well due to my inability to get comfortable.  My husband told me that last night I sat upright in bed, my eyes open, and yelling that my arm was killing me.  He said that I begged him to rub it (to which he lovingly complied).  I have no recollection of this at all. It is very uncharacteristic of me to do something like that.  My husband works hard, and I would never knowingly wake him even if I were in pain.  Rather I would have gotten up and taken some ibuprofen and gone back to bed.  When I do awaken in the night because of pain, it is intense.  I see my onc next week and am going to tell her about it.  The pain seems to be getting worse - not better.  I'm going to begin taking the Arimidex in the morning to see if that helps.  I don't really want to switch to Femara because of this research study which included Arimidex and not Femara:  http://www.breastcancer.org/treatment/hormonal/new_research/20081029b.jsp.  I recognize that the research was funded by AstraZeneca.  I'm just scared to switch meds and then experience worse SEs than I already am having.  I also have very intense night sweats.  I wake up in the middle of the night and perspiration is literally dripping off my elbows.  It is so bizarre.  I get lightly sweaty everywhere else, but in the bend of my elbows I sweat profusely.  Anyone else experience this?

  • MTG
    MTG Member Posts: 337

    Rocket - My hot spot for any hot flash has always been just under my breasts. On occassion, I get really bag night sweats  where my sheets are soaked. I'm convinced it has to do with my diet that day and an onc I talked to confirmed it.  I know spicy food and caffeine are supposed to be culprits but since I frequently consume both, they're clearly not my triggers. Next time I get bad night sweats, my plan is to note everything I ate the day before and then try to find my personal triggers. It might for help you to figure out what's causing yours

    paamboli - Thanks for the tip. I've found some really good tips on gluten free foods on this site but for now, I'm just compiling a list, I figure that the longer I can forego white foods like breads, pastas,  cereals and even rice (which is of course gluten free), the better for my waistline

  • ronqt1
    ronqt1 Member Posts: 565

    Hi Pam:

    I was off A for about 2 months as of June 19, and recently started Femara. Arimidex caused severe hand and wrist problems for me, (out of control). Also, I knew something was wrong, b/c I was not able to think clearly. Onc. took me off. Within days mentally I felt like a person again, able to think clearly, however, as I write now, I still have problems with wrists. Over this past weekend I even had problems squeezing the toothpaste out of the tube (near end). Wrists still hurt but finger problems are gone.

    I am on Femara every other day and so far no problems. Yes, I feel mentally good, except for the fact that my mammo did not read well, as well as the ultra sound and now have to take an MRI of my augmented breast this Friday.

     If you go off A, enjoy the vacation. I have blogged about this on a number of sites.

    Have a good evening.

    Hugs,

  • paamboli
    paamboli Member Posts: 43

    I haven't started A yet, but I've had nasty aches in my leg muscles for a long time. which get better for a few hours when I rub in Arnica gel. The brand is Boiron, and it's available in health food stores and organic markets. It does not smell, nor will it make anything completely go away, but it does ease things a bit. Because it is topical, you do not have to worry about a drug interaction or the S/E 's of pain pills.

    paamboli

  • BocaCiegaBabe
    BocaCiegaBabe Member Posts: 12
    ronqt1, my diagnosis was similar to yours.  I saw my onc today after being off Arimidex for a month. I had different se, but they were personally disconcerting.  There was improvement over the month off.  Today she suggested that I either split the pills in half, do MWF dosage, or take none at all, saying at the same time..."your tumor was so small".  I don't want to risk a recurrence, but on the other hand, as she said, there must be some life outside of this!  Between my age, (67), my tumor size, grade and stage, I get the impression she feels my risk of a recurrence isn't that great (and was too kind to mention my age).  I'm hoping she is right....  I've decided to see how it goes with MWF.  Hate to give it up altogether.