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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • april25
    april25 Member Posts: 367

    Hello, all!

    I haven't been on for a while, but thought I should check in (and I read all the posts since I was last here!).

    I'm a year out from starting on anastrozole (Accord). I'd heard that Teva was better than Accord, but I figured I'd just stay on it until it started causing problem and then try and switch, but so far I don't have any major SEs.

    Sleeping--No noticeable affect. I take the pill in the morning.

    Hair--Mine was thinning before my dx and chemo! I took small amounts of biotin post chemo (3000mcg) and my hair has been growing back in--around 5 or 6" now, and slightly thicker than before, actually. I used to use minoxodil before chemo--you need to put several drops onto your scalp daily and never stop. It didn't really seem to do much for me, even after years of use. But if my hair starts to look thin again, I might start it up. It's possible that it only looks thicker now because it's much shorter!

    Joint pain-- I had stiff hands upon waking BEFORE (strangely it seemed to stop during chemo). I still have this now--it seemed worse just after I started anastrozole, but I'm not sure if I was just super-conscious of SEs or had time to pay attention after finishing chemo/lx/rads. The good thing is that it seems to not be getting any worse, and the pain is mild, even negligible, and just goes away once my hands start moving. I haven't had any other joint pain. (Not sure if it matters, but I didn't notice joint pain on Neulasta, either.) I do have some pre-existing arthritis in my lower back. Hasn't gotten worse on anastrozole.

    Bones-- I had a bone density test before chemo because chemo can affect that. I had another recently and now I DO have osteopenia (lower than normal bone density). Of course, it's possible that I might have been getting that anyway because of age (59). Anyway, my general put me on alendronate sodium (I think this is the generic of Fosamax) tablets (Teva) 70mg, taken once a week, which is a bit of a pain since they want you to not eat anything for several hours after and drink lots of water.

    Vitamin D-- I was low, so I'm taking 1,000mg supplements.

    Doc. said I should not take Calcium supplements, just try and get it through food.

    Eyes-- I had the oil-plug/dry eye problem a little during chemo, but not after. My eyes already had problems pre-dx (glaucoma, floaters, some minor retinal detachment). My eyes don't seem to be any worse from the anastrozole, at least so far!

    Fatigue -- I have it... but I had it from before dx!

    Depression-- I had a bit of it before dx. Thanks for the heads-up about some anti-depressants not being good with AIs! I'll have to check on that. I actually went off anti-depressants (wellbutrin/buproprion) after chemo and lx... but lately have wanted to go back on...

    Hot flashes -- Had them through menopause, but not on anastrozole (maybe a very few, slight times, but I couldn't tell... it was one of those "is it hot in here?" things).

    ---Basically, the bone density thing is a bit of a worry, but I figured I'd have to deal with it at some point due to aging. Hopefully the alendronate sodium will do the job, though! (and with no SEs! I only just went on it, so who knows?)

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    April, my hair was also thinning before AIs and my grandmother had that problem too. Perhaps anastrozole is making it worse - or not. Like you I was stiff in the morning prior to AIs. It sounds like your protocol for Fosamax (yes that's what you're taking generically, me too; mine is by Watson) is different. I take it first thing, drink lots of water, and eat after 30 minutes. No problems at all. I had osteopenia prior to starting AIs. My biggest problem with the generic Fosamax is getting the damned pill out of the impossible to push out packaging!

    HUGS!

  • florida_jo
    florida_jo Member Posts: 3

    Sloan, my MO pretty much dismisses any of my complaints as not related to Arimidex. The fact is I did not have a problem with my Achilles tendon before taking Arimidex. 2 yrs ago I did have ACL tendon replacement in that same leg as the problematic tendon, so it is related, but still I blame Arimidex because this pain developed within weeks of talking the pill.

    Ejmann44, I am retaining water, my ankles are swollen(not every day). This had not happened to me before taking this pill. Now that you brought it up I connected the dots. What does that mean? Kidneys problems?

    I am taking the brand version since the direct mail order from AstraZeneca pharmacy is only $30. My insurance would charge me $45 for generic version and $120 for a brand name. Don't get me started on big pharma, don't want to lose this deal!

  • Sara536
    Sara536 Member Posts: 5,937

    Help! 3 days on Anastrozole and I just can't take it! Without going into a description of what it it did to me, I will say that taking one more pill would be the equivalent to committing suicide. I am not ready for that. I am in love with life.

    Also, I have an Oncotype DX score of 14. is the BCI the same or would it provide any additional information?

    Does anyone know how Anastrozole affects Blood Sugar? Mine is suddenly off the charts first thing in the morning.

    Thanks

  • HappyHammer
    HappyHammer Member Posts: 985

    ejmann..YES- I had a huge amount of water retention..tried to work out and eat right with no change for a month...feet and legs looked like they belonges to someone I did not know- took 3-4 weeks of no meds to get back to normal....back on Arimidex- Teva brand and SE's are ok

  • margochanning
    margochanning Member Posts: 70

    Great article, which I had found previously and certainly is a very sympathetic view towards the effects of AI's. Here's another very comprehensive article from the NIH website which also details effects from breast cancer drug treatment: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320582...

    This paragraph, in particular, really zeroes in on the total body/mind effect of profound estrogen deprivation and why it is such a hardship for so many people:

    " First, overwhelming evidence is accumulating to show that estrogenic activity directly impacts a vast array of physiologic functions beyond those involving reproductive and sexual function., Estrogen receptors (ERs) are present throughout the body, including the anterior and posterior, portions of the human eye and also in the lacrimal, and meibomian glands,, responsible for protecting the surface of the eye. In fact, ERs are present throughout the central nervous system (CNS), so changes in estrogenic activity have the potential to affect central visual processing, in addition to ocular visual processing. Moreover, because estrogens are synthesized locally throughout the body, much estrogenic activity is autocrine or paracrine, rather than endocrine. These autocrine and paracrine estrogenic actions take on increased importance for post-menopausal women, whose estrogen supplies have decreased markedly"

    Earlier this year I was diagnosed with Episcleritis in one eye and just had an occurrence in the other. The Opthalmalogist and Rheumatologist I was referred to both suspect that Anastrazole was the culprit. I've since gone back on Letrozole but they both said it's the lack of estrogen that is causing the disease. And, that it may not be healed when I finish AI's if structural damage has been done.

  • kmpod
    kmpod Member Posts: 84

    Thank you for that link on the ocular effects of AI's, Margo. It is, indeed, the most comprehensive article on the subject I have seen.

    There's no doubt in my mind that my dry eye/ocular surface disorder has been exacerbated by the use of Arimidex. I had binocular PVD's occur within a year of taking the medication, as well as cataracts that required surgery in both eyes.

    I'm a retired optometrist and will be forwarding this helpful information to my former colleagues.

  • Sloan15
    Sloan15 Member Posts: 845

    Sara, I don't know about blood sugar, but the survival rate you were given is based on you taking the meds and having radiation. You don't have your tumor stats posted, but I'm guessing you are stage I. Someone told me to think about taking anastrozole like taking birth control; it's just prevention. My doctor told me to try it for 3 months and mist SE's will go away. Mine did. I notice the sore Achilles and dry eyes, but that's it. If things get worse, there are other types. Did you try switching brands? I switched from astra zenica to Teva brand, and some side effects went away. I asked 1 CVS pharmacy to awitch me, and they said no. But, another CVS said yes. So maybe try that.

  • ejmann44
    ejmann44 Member Posts: 38

    I have to use CVS/Caremark for 90 day supplies. I priced out the name brand and they want $1477 for a three month supply. I saw the direct web site and wondered if that is legit. I am wondering if this month's pills are different from the last ones I had. I didn't know about the mutiple makers of anastrozole. Sounds like more people have better results with TEVA? I was going to try to call CVS/Caremark on Tuesday to see if they can make my next 90 day supply TEVA produced.

  • NisaVilla
    NisaVilla Member Posts: 505
    Elaine - the Arimidex Direct is legit. Original formula made in the UK. Exactly the same as what I used to pay $100 co-pay at CVS. Now it is mailed to my door for $30/month. No income-based or any pre-requisites. I will never understand why pharmacies charge $498/mo.
  • florida_jo
    florida_jo Member Posts: 3

    EJ- I just started on Arimidex in July and till now had samples from my MOs office. I only recently signed up on Astra Zeneca website, my MO faxed the prescription to them and I just received 3 mos supply for $90. It is legit, cheap (relative to any other version from CVS) and delivered to my door, no questions asked. I am only hoping that the SEs go away soon...or I can get used to them and stop stressing over it.


  • Blinkie
    Blinkie Member Posts: 123

    I've started taking anastrozole five days ago. Oh. Great.

    I've had hot flashes since menopause, for over 15 years. In the past two days, the flashes are more frequent and hotter.

    What's bothering me more, though, is sudden, strong GERD. I had GERD develop when I went through menopause, but I learned to avoid certain foods to avoid problems. Now - boom! Yesterday and today - it's back. Horrible.

    Fortunately, I do know what I can do for GERD (sleep with head above stomach, drink water not coffee, don't eat any white flour, etc.)

    Phooey!!


  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42

    Hey ladies,

    I had to stop taking Arimidex today after 3 weeks. Had dizziness, nausea and daily headaches and over time getting worse not better. MO had me stop and said some women cant tolerate it well and they give it a few weeks break and will try another version. Know many women who take it with ease...I was not one of them but I am sure there is a pill out there for me!!! :)


  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    DFWFlyGirl, Right attitude. If one AI doesn't work, try another. Hopefully one will work for you and be tolerable. Good luck!

    HUGS!

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42

    Thanks PontiacPeggy!!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    You're welcome!

    HUGS!

  • Novmoon
    Novmoon Member Posts: 41

    DFEFLYGIRL, I was on anastrozole for only 5 days so you lasted longer than me. Worst for me was insomnia. MO switched me to femara but waiting until the weekend to start. Find out Friday when I get the TEs out. Good luck to you!

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42

    Thanks NovMoon! Did you have any of the side effects I had besides insomnia? Will be anxious to hear how you do on Femara. Did your doctor go to that next for any reason?

  • Novmoon
    Novmoon Member Posts: 41

    Besides the insomnia I felt jittery and would cry uncontrollably at the drop of a hat (totally not like me). I do not know why the MO chose to go with the Femara, just got a voicemail from the nurse with the change in order. I thought he would order something for sleep or mood, but instead change to the Femara. Supposed to start today but am nervous about it. Don't know whether to do morning or night, so will compromise and take after I get off work. Will let you know how it goes.

  • Mommato3
    Mommato3 Member Posts: 468

    I started out taking my Anastrozole in the evenings and didn't have any problems with insomnia. After a while I started to experience insomnia so I switched to mornings. No more problems after that. Hopefully the Femara works better for you!

  • Novmoon
    Novmoon Member Posts: 41

    Glad you had no problems. I took it at 7 a.m. every day but was still wide awake at night.

  • mltdd
    mltdd Member Posts: 45

    I did a little research and found that the vitamin D 3 supplements my MO prescribed to reduce the risk of bone fracture while on Arimidex can cause insomnia. I've switched the time of day I take the second vitamin and have been sleeping better.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Mltdd, interesting on the Vitamin D3. I take over the counter, 1000 mg gelcaps 3 times a day (with meals). I haven't noticed any problems with sleep. Perhaps it is one of those things that depends on the individual.

    HUGS!

  • Sloan15
    Sloan15 Member Posts: 845

    For anyone with Achilles tendon pain, here is the treatment algorithm. The first step (once Identified) is Alfredson's heel drop program. You can Google it and see what it looks like. Pretty much, though, you stand on a step, knees straight to engage gastrocnemius (calf muscle), you raise up onto the toes. Then with sore Achilles tendon foot you lower your self down so your heel goes lower than the step. Then, do the same thing with bent knees to engage the soleus muscle. Do this 3 sets of 15, twice a day for 6 weeks. Yep, 180 of them a day! Your calves will look great in 6 weeks!

    Here is the study http://rheumatology.oxfordjournals.org/content/46/... and here is an excerpt: "As complaints caused by tendinopathy can be severe and aromatase inhibitors are increasingly used in the treatment of breast cancer, one has to be aware of this possible side effect."

    Here's the study http://www.ncbi.nlm.nih.gov/pmc/articles/PMC265894... and here are a couple excerpts:

    "Alfredson's model of eccentric training involves no concentric loading and emphasises the need for patients to complete the exercise protocol despite pain in the tendon. If patients experience no tendon pain doing this programme, the load should be increased until the exercises provoke pain. Good short‐term and long‐term clinical results have been reported.,, This 12‐week programme is effective when the other conventional treatments (rest, NSAIDs, change of shoes, orthoses, physical therapy and ordinary training programmes) have failed and is successful in approximately 90% of those with mid‐tendon pain and pathology. Insertional Achilles tendon pain is not as responsive, and good clinical results are achieved in approximately 30% of tendons."

    "NSAIDs showed little or no effect on outcome, and further discussion of medication has not been included in this review., "

    "A concentric calf‐muscle training programme (calf raises) did not prove as effective as the eccentric (heel‐drop) training programme."


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  • 2ndGenBCA
    2ndGenBCA Member Posts: 28

    Hello everyone,

    After about 5 1/2 months on generic anastrozole (manuf. by accord) with few SE, a series of crippling SE overcame my body over a period of about a month; severe joint pain especially in hips and lower back, inability to stand straight up, uncontrollable diarrhea, headaches, hand and foot pain and swelling, mood swings, and "walls" of fatigue. From the get-go I had hot flashes hit me with a vengeance, but I worked through those with cool wet cloths and a fan. The Peridin C my oncologist recommended did not reduce hot flashes for me despite my continued use. I figured perhaps they were minimizing them so I continued. When I first asked him about brands he said all of the generics were "fine." However, the SE got so severe -- I knew there was no way I could continue this medication for much longer, and especially not the 5 years as planned. He had told me previously that if I got a bit sore to work on it and "push through" it if possible. I tried, but I could barely move. I called to ask what I might do and was told to stop the medication immediately. I have about a two week break before I visit the doctor again and was told I would be moved to another AI. All of what I read shows they ALL potentially have these side effects - perhaps one will produce fewer side effects for me. Did anyone have better luck with another AI in reducing SE? I read previous posts where others didn't have SE at all - wow, that is wonderful. 

    Dreading even trying another one.  I have to have some quality of life. Anastrozole destroyed life for me. 

    Appreciate any experiences you can share with Aromasin / Exemestane or Femara /Letrozone -- and whether the name brand versus the generic made any difference for you. Thank you.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    2ndGenBCA, while this may not be true in your case, some women find that the fillers/binders used by some manufacturers cause their SEs. Most for whom that has been true have switched to either Teva or the brand name made by AstraZeneca. Those are possibilities. You might check out the fillers used by Accord for your anastrozole. That could be the culprit. Or not. I started with Teva just because everyone said they had few if any issues with fillers and I have a huge list of allergies. So far after 2 years, I've had no problems. Good luck finding the drug that works for you. It's an awful dilemma.

    HUGS!

  • Molly50
    Molly50 Member Posts: 3,008

    2nd generation, I had terrible SE's on Anastrozole. I am now on exemestane the generic of Aromasin. So far minor hot flashes are all I have.

  • patoo
    patoo Member Posts: 5,243

    2ndGen, Accord brand seems to be the worse reported by many. Your MO may switch you altogether but you could also try going for brand-name Arimidex by AstraZeneca. In any case your QOL is important and there are options out there for you. BTW, I've been on the Accord brand for at least a year with no SE's worth mentioning. Everytime I get my next script refill I forget to ask for the Teva brand (a generic that works well for many).

    Good luck. Hug

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260

    was on ARimidex, but had to go off because of insomnia,,,i have been on letrozole (Femara) now since march. I have noticed an increase in blood pressure and so dr said go off fot 2 weeks, BP was up down so now off to regular Dr to see what he suggests. Very little side effects with this A1, hope its my diet and this political season, i hate hate hate all this bickering, fighting, name calling etc. cant wait for it to be done! Otherwise, we will seewhat cmes up in the next few months, still a little insomnia but not as bad i dont think. Anger issues milder also

  • ejmann44
    ejmann44 Member Posts: 38

    Is anyone taking Anastrozole and have Type II Diabetes? I was just diagnosed with it back in June and I'm wondering how this affects blood pressure and blood sugar.