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For Arimidex/Anastrozole new, past, and ongoing New

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  • Stillme54
    Stillme54 Member Posts: 12
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    I found it interesting to read about the Claritin! I am just about at the end of my rope. The joint and general muscle pain is keeping me up at night no matter how much ibuprofen I take. I have been on anastrozole for almost 3 years now, and side effects were minimal for the first year and a half but have gotten steadily worse! I have been thinking about switching to tamoxifen but will try the Claritin, first. The worst of the pain is only at night. It seems to show up early evening and steadily gets worse.

  • Ellyn27
    Ellyn27 Member Posts: 42
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    BonnieChance - I decided to take my anastrozole before bed only because that's when I've been taking my cholestrol meds for several years now. I just figured I take them together otherwise I may forget. I've been taking the anastrozole for a week and haven't noticed anything in the way of SEs. I read about those that are seeing SEs long after they've starting taking it though. I just try not to think about it. 

  • chronicpain
    chronicpain Member Posts: 217
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    I started brand name Arimidex from mailorder Eagle Pharmacy yesterday. My MO insisted I only take brand name to minimize musculoskeletal SE, based on her clinical experience, and for the $1 per day cash pay it is reasonably priced.

    I have autoimmune problems, chronic pain and osteoporosis from steroids (previously had fractures), so we were hesitant to use any AI at all, but as I am not doing radiation, with my high end of “low” range oncotype at 13, the MO thought I should at least try it and see if I tolerate it. We will also be replacing my chronic osteoporosis medicine risedronate with prolia (denosumab) to help not only continue to treat the OP while I continue my chronic maintenance prednisone, but also hopefully have bone protection from BC long term delayed metastases.

    Arimidex per reports commonly causes problems in bone and joints and to a lesser degree muscles, but the studies did not look to see if women who already had pain in joints and muscles developed more pain, and pain is just pain (not irreversible like long term radiation side effects), so I will try it and know soon if I get worse. My next bone density is in May, I get them annually, have been stable a few years on treatment, so if BMD suddenly goes downhill next year, despite prolia, we will know that Arimidex is the likely culprit.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    I will soon be joining you ladies as my MO prescribed anastrozole for me last Friday.

    I am waiting for my script by mail.

    I wasn’t quite menopausal yet so had my first monthly Zoladex (goserelin) shot yesterday and am now considered menopausal. Once the pills arrive, I can start taking them.

    Hoping SEs aren’t too bad. Most concerned about joint pain as I have arthritis already that bothers me.

    Will have my first bone density test Wednesday. Hoping my bones are strong!!!


  • meg2016
    meg2016 Member Posts: 188
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    Stillme54- I had the same issues with the joint pain keeping me up at night. Whats helped me enough to get sleep is:

    - taking my pill in the morning first thing

    - some kind of stretching exercise also in the morning (yoga or pilates or pilates reformer) at least every other day

    - taking my vitamins after dinner hoping to reduce imflammation- vitamin D, tumeric, Glucosamine and Chondroitin, magnesium, vitamin K

  • castigame
    castigame Member Posts: 336
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    I am counting my lucky stars. Now I can even skip NSAID and Flexitouch pump here and there. Can skip epsom salt scrub here and there. Since I started working again I have not been taking supplements. Yes I have arthritis. What I think is helping is Kale, carrott and Olive oil. All are anti-inflammatory.


  • snickersmom
    snickersmom Member Posts: 599
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    I've been on Arimidex (name brand) since roughly July of 2017, following my BMX on May 3rd. I did have night sweats and hot flashes for the first few weeks, but not bad. And they have since pretty much stopped. My worst SE's have been the weight - I haven't gained any pounds but it seems that my stomach is now looking like I'm 7 months pregnant. I also have AI brain - I lose/forget words here and there, which is so frustrating. Aches and pains - I think so but since I already have back issues because of herniated discs, I don't know if that's the Arimidex or not. I do suffer some from depression but again, not sure.

    So can someone please tell me if you take Claritin to counteract the Arimidex symptoms? I'm very confused w.

  • snickersmom
    snickersmom Member Posts: 599
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    What do I have to do to get a post to print the whole message?? It seems like every time I hit Submit, it leaves off a couple of words or even a sentence when it prints.


  • biscuits
    biscuits Member Posts: 2,158
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    Hi Snickersmom....that is a great question about taking the Claritin along with the Arimidex. I would be interested in hearing if it can help with the joint and bone pain SE’s, as well. Also, when I post a reply, I usually have to finish my sentence and then hit the space bar a few times before I submit my post. Try that and see if it helps.

  • castigame
    castigame Member Posts: 336
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    if I may sisters about Claritin...

    Claritin is anti-histamine which sorta numbs nerve which transmits pain. Do you remember the chemo days you were told to take Claritin? For body aches? I used to hate taking Claritin during chemo. I used to split the pills to take half every 12 hrs. I hesitated taking it again but I had nothing to lose by trying. Try a couple of days sisters. If you insist on brand name, Amazon sells as low as 23 cents per pill. Generic Loratidine should be ok too.

    I take Claritin at night to sleep better. Arimidex used to give me insomnia so I start taking every morning. If you take any type of anti-depressant w Arimidex it is ok. I take AI w 10mg Celexa every morning.

    Last CT scan in July did show arthtitis. Yes bad weather bothers my finger tips a bit here and there. Back aches here and there but it could be aging also. All and all, it is amazing I am more than OK w AI.

    Or my body is used to regular beating after 8 dose dense chemos. (Likely be life time due to bilateral DX stage 3a and 1a)

    Another thing dont give up AI until you try brand name via Eagle pharmacy. The pharmacy sells many other brand name prescriptions btw. Funny the lot # on Eagle pharmacy sent Arimidex was the same as the one on local pharmacy Arimidex.

    Or it could be daily Epsom Salt scrub I had almost year. or daily Flexitouch pump or all the supplements or essential oil diffusers. Or Arnicare cream I used quite a bit. Or Kale multigrain rice which is anti-inflammarory.

    Sisters you have gone thru the bleeping treatments so dont you still want to try one more time w AI???

  • janett2014
    janett2014 Member Posts: 2,950
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    Be sure and take Claritin (or generic) without decongestant. You want JUST the antihistamine.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    like Castigame, I take Claritin regular daily and have since chemo due to studies in Europe that showed Claritin made cancer cells less sticky making it harder for them to clump together. And will continue to take with Anastrozole.

    Omega 3 is good for joint pain as is Turmeric. Trouble with Turmeric is that some studies show Turmeric is estrogen positive which may be problematic for ER+ BC. Even my doctors don’t agree on taking or stopping Turmeric so that decision is a personal one but I do know Turmeric and Omega 3 helped my current arthritis pains before cancer

  • snickersmom
    snickersmom Member Posts: 599
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    Thank you all for the advice!! I do take Omega 3 fish oil every day. I am also on Gabapentin and Tramadol (both for my back), Zoloft for anxiety, Arimidex (brand name), Simvistatin, and Vitamin E, D, and multi-vitamin. Oh yeah, and calcium. I have just switched to Boniva instead of Fosomax but haven't started taking it yet. I do take 3mg of Melatonin and that has really helped me sleep.

    My husband has awful allergies and used to take Claritin so we have it in the house. I'm going to try it!

    Biscuits - thanks for the hint with posting. I have started adding a few spaces and it seems to work better. Sometimes at night it's really slow and I do tend to type too fast!

    I'll definitely let you all know how it goes!

  • Ellyn27
    Ellyn27 Member Posts: 42
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    Been taking my Anasatrazole for about 10 days now and only SE so far has been 2 nights where I got a bit warm. I was fine sleeping but then once I got up because I was warm, I couldn't fall back to sleep. Other than that, haven't really noticed anything. I have started exercising 3 days a week, was not doing any before, so maybe that's helping with the sleep. I see here some of you didn't notice SEs until you took them for a while. Keeping my fingers crossed.

    I got a book at the library called "whole food guide for breast cancer survivors - a nutritional approach to preventing recurrence". There's a chapter on "avoidable exposures" and OMG. there's cancer causing things in just about EVERYTHING. Just about every beauty product (i.e. lotions, creams, shampoo, hair dye, nail polish, deodorant/antiperspirants), plastic containers, Teflon pans, cleaning products), all have some type of cancer causing thing in them. Why are these products on the market? I know I won't be giving all these things up, but I sure plan to change a few of them. 

  • PauletteK
    PauletteK Member Posts: 1,279
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    Hi ladies, I’m from July and August chemo 2017 group, will be going into AI after radiation.

    Just found out my MO requested Bone CT instead of Bone Density Test before AI, I just wonder why? I thought we only need bone density test, if I have bone mets would it shows up on my PET scan? I know I might be worry too much! Is it normal to have bone CT before taking AI? I hope someone knows about this?

    Thank you!


  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    paulettek— while we wait for the local experts to respond (I don’t know the answer to your question), I will say that all I had was s bone density (dexa) scan. I also had blood work to test for menopause as I was sure I was still pre-menopausal. Blood work showed I was not quite officially menopausal yet so I had a Zoladex shot Monday to shut down my ovaries and I will have monthly shots until my hysterectomy.

    The Dexa scan was definitely not a bone ct for me.

  • PauletteK
    PauletteK Member Posts: 1,279
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    Thanks DodgersGirl. I’m waiting for my MO to call me also. Being a cancer patient I worry any little thing now. I hate this.

  • Ellyn27
    Ellyn27 Member Posts: 42
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    PauletteK - I had no bone testing at all before being prescribed anastrozole. I had a bone density test 1-2 years ago and my MO said she'll contact the dr that did it and get my results from that test. I will have a one-month followup with my MO (so 1-month being on anastrozole). I was told I would have blood work done to test for red blood cells, white blood cells, liver, kidneys and something called "markers". 

    Question for anyone that knows - when you have a bone density test in one part of your body are the results the same for all your bones? I'll ask when I go back to doctor, just curious. I had the bone density test done on my hips because I had a hip replacement about 8 years ago.

  • kae_md99
    kae_md99 Member Posts: 394
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    hi all,

    about to start arimidex. is it better to take it night or day? im already taking glucosamine chondroitin and turmeric. i wonder if adding claritin will help with bone pain? thanks

  • Stillme54
    Stillme54 Member Posts: 12
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    I’ve been taking Anastrozole for three years and it doesn’t seem to matter what time of the day I take it. My painful side effects are worse in the evening when I am more inactive.

  • PauletteK
    PauletteK Member Posts: 1,279
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    Stillme, what kind of side effects do you have in the evening? Joint pains?

    Kae, I have not started but one of my friend has been on for years she told me to take in the morning so you can sleep at night.



  • dodgersgirl
    dodgersgirl Member Posts: 1,902
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    paulettek— I am taking pill at night and so far it has not impacted my sleep. Now I haven’t been taking it long, so I realize things can change but so far so good

  • Stillme54
    Stillme54 Member Posts: 12
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    Paulette K.. My side effects include bone and joint pain, muscle stiffness, the soles of my feet hurt. I have all of these symptoms during the day but they always seem to get worse as the evening progresses and cause me to have difficulty getting to sleep and staying asleep. I had almost no side effects for the first year and a half that I was on Anastrozole. I’m over half way through my five years on this drug so I hope I can stick with it. I was fortunate to not have to have chemotherapy, so I feel somewhat like a whiner, to complain about my side effects when others have dealt with so much worse

  • snickersmom
    snickersmom Member Posts: 599
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    StillMe - don't you dare feel bad about complaining! I had a BMX and am on Arimidex. No chemo or radiation necessary because tumor was very small and not in lymph nodes. Was I lucky because I didn't have chemo or radiation? Yes, to that extent I was. BUT, I'm missing two very important body parts that I carried around for 70 years, I have permanent nerve damage, and lots of side effects. At the end of the day, we all had or have cancer. So please don't make light of yours.

    I was taking the Arimidex in the morning but switched to night to see if that would help with the aches and pains. But I am switching back to mornings because taking it at night seemed to really knock me out and I woke up very groggy. I take Melatonin 3mg to help me sleep and that has worked well for me. So I will go back to taking the AI in the morning. I'm trying to get back up to walking over 10,000 steps, and the walking has helped me feel better.


  • Stillme54
    Stillme54 Member Posts: 12
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    Thank you Snickersmom for giving me the kick I needed! Just knowing there are others who are feeling very similar to me, really helps!

  • CgC58
    CgC58 Member Posts: 1
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    Snickersmom, I am responding to your post because a lot of what you said sounds like I could have written it. Some of what Still Me says does too.I have been on anastrozole for the better part of 1 1/2 years. Had a 6 week stint on Letrozole. The worst problem right now is brain fog, fatigue, can't make a decision, on the verge of tears all the time, feel worthless. I emailed my MO but stopped the anastrozole myself to determine if it's the medicine or something else. If it were possible, I would say my brain feels numb. I had this all on the Letrozole and much faster. After I stopped that things got better in a week or less. I have an upcoming appointment with my primary care physician also. Have not had good luck in the past with adding to my bupropion with other meds. I am afraid to be off the anastrozole but think it's at least part of my misery. What a decision to make with a fuzzy brain.

  • moderators
    moderators Posts: 8,185
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    Dear CgC58,

    Welcome to the BCO community. We are glad that you reached out to our members. You are in good company here and we hope that you will benefit from the support that is readily shared here and the information that is provided by those in similar situations. We hope to see you around. The Mods

  • PauletteK
    PauletteK Member Posts: 1,279
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    stillme, hey you have every right to complains, we have cancer and we should not take it lightly. In fact, I do not mind to hear your complains so I would know what to expect. Snickers Mom thanks for the input.

    Still have one more radiation to go, oh gosh, do I get burn from radiation..... after that then I am going to have my bone density scan.

    CgC, I have chemo brain even I stopped chemoi still have it. I can’t remeber a lot of spelling, sometime I forget the words. I’m hoping thing will get better, now I worry thing might get worse with AI ... Hahahaha!


  • Stillme54
    Stillme54 Member Posts: 12
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    Thanks for all the input, everyone! It really does help to know I am not alone with all these strange side effects. Today, my feet hurt all day. I have been taking Claritin for 6 days, now. I’m not really noticing any less pain but I swear I’m starting to sleep a little better! Even though I still wake up in the middle of the night, I am able to go back to bed after walking around for a little while. Before, it would be several hours every night that I was awake. I take it in the morning with everything else, because I am afraid it might keep me awake if I take it at night. My goal would be to try to get at least 7 hours every night. I have so many things going on in my life besides my cancer that I have felt overwhelmed at times with all of it. Getting more sleep would really help

  • Ellyn27
    Ellyn27 Member Posts: 42
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    I'm sorry so many of you are having SEs on your meds. I've been on anastrazole for 2 weeks now and have only noticed I got a little warm a few nights but nothing terrible. I feel this is too good to be true and am wondering how long after starting your meds did you get SEs? Does it take time for our bodies to feel the effects? I decided this was the year for ME and for ME to get healthy. So I have been exercising (which I haven't done in years so it's killing me haha) and eating better so maybe that's helping with the SEs ... not sure, but I'm going to think it's helping. Stay strong!!