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

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Comments

  • humblepeace
    humblepeace Member Posts: 85

    Hi Djt- I initially was on Tamoxifen for six month before having a hysterectomy and being switched to Arimidex.

    Within the first three days of starting hormone therapy (Tamoxifen) I began to have moderate discomfort in my back which lasted for three month, every day. I had x-ray, bone scan, and ct scan which showed some arthritis which was exasperated chemo and tamoxifen. The back pain did get better with time. As for the vision....oh my!! I had episodes of not just blurry vision, but double vision as well. It lasted about 2-3months off and on but once it improved it had not returned.

    Starting Arimidex after Tamoxifen has its own set of se’s, but the vision is good and my back is much improved. This may be the issues with hormone therapy, regardless of the pill. I hope this helps. God bless you.

  • MexicoHeather
    MexicoHeather Member Posts: 147

    Great article Bella2013, I thank you. There are ER and HER2 receptors in the eye. Estrogen keeps the eye supple, you might say. The article went on to say that dry eye should be treated with moisture drops. 

    Eye issues come with menopause, too, so just consider that as well, folks.

    JanA: The other day, I had 2 glasses of wine, I really didn't feel well - bloated, liver hurt. So I would say that we are all different,  I have to watch my liver enzymes because of the AI, so I'm sticking with a little sangria now and then.

  • jinx27
    jinx27 Member Posts: 119

    Hello All

    Im 30 y/o and in my 2nd year of taking Anastrozole and can't stand it. The side effects are ridiculous for me (nausea, vomiting and splitting headaches, 6-8 hot flashes a day). I recently moved and changed pharmacies, my RX is manufactured in India and is generic. I did some research on the boards here and have seen other woman go through the same thing. I decided to just have my meds mail ordered from AstraZeneca to see if there is a difference.


    Has anyone has the same issue with GENERIC VS NAME BRAND ANASTROZOLE???

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Jinx, you are so very young to be on anastrozole. Have you had a hysterectomy/oophrectomy? I would guess that many of the problems you are having are related to the AI shutting down your estrogen production. That being said, when I first started anastrozole 4 years ago, I read many of the posts here and everyone was saying that the fillers can be an issue and that the generic made by Teva seemed to have the fewest issues. So that is what I've been getting. It's also possible that the brand name could work better for you. It can take some experimentation to find the right AI for you. And some women turn to Tamoxifen when they can't tolerate AIs. Each of us is different as you can tell. Good luck.

    HUGS!

  • cbk
    cbk Member Posts: 323

    jinx

    I recently switched from TEVA brand anastrozole to brand name Arimidex! Now I don't know if it's beginners luck but it's like completely different for me! I feel soooooo much better. This was a last ditch effort my MO and I decided to try before switching me to another Al.

    As Peggyasked above if you had an ooph before being in menopause it can totally throw everything out of whack and many of your symptoms you are thinking are solely from anastrozole are largely from a severe drop of estrogen from ooph! Believe me I have been living that one for nine months and I'm older than you. It's been quite a fight for me so I sympathize with you completely.

    Please let me know if you have any further questions or you can DM me if this is your situation. Hang in there!

    🤗

  • orangedaisy
    orangedaisy Member Posts: 129

    I’ve been on Anastrozole for 9 months. I have very little joint pain. Just a little in my thumbs. I have night sweats at 4 am every night, but that’s bearable. My cholesterol jumped 80 points. I have the beginning of osteopenia in my femoral necks. My MO wants me to take the bone density shots. I told her I would think about it. Multiple friends have told me horror stories, so I’ve decided not to take it and ask for another scan in a year. It seems crazy to take it for osteopenia

  • cindyny
    cindyny Member Posts: 1,292

    Orangedaisy- I can't comment on taking meds for bone density. But I can recommend doing weight bearing exercises. A friend at the gym started lifting weights and has greatly improved her bone density. I don't "lift" her kind of weights but think all kinds of weight bearing exercise is good for your bones. Start easy, try adding weights to walks, something is better than nothing. Best wishes to stronger bones!

  • orangedaisy
    orangedaisy Member Posts: 129

    Thanks Cindy. I do Leslie Sansomes walk at home which really focuses on weight bearing exercise one leg at a time. I also read for femoral neck osteopenia, it’s important to strengthen the hip muscles. I’ve been working on that at Pilates sessions. Also taking calcium and D3. I’m trying everything I can avoid bone density loss

  • barbhenz
    barbhenz Member Posts: 2

    I won't lie, I'm looking for some reassurance here. I was first diagnosed with estrogen positive receptor BC in 2005, had lumpectomy with radiation treatments. Started Tamoxifen and took it for a year and hated the side affects, so my dr said that quality of life would override my side effects. Fast forward to 2013 I was diagnosed again. This time I chose bilateral mastectomy with reconstruction. I forced myself to take the Tamoxifen again as I was still pre-menopausal. I took it pretty successfully for 5 years. I was thinking that was it, but instead my onc has put me on Arimidex for 5 more years. I only started the Arimidex last Monday. Last night I was lying on the couch after everyone else went to sleep, sobbing and praying for my heart to just stop and thinking of any other way I could just die without me having to actually kill myself. Granted, I'm pretty sure I am a freaking cuckoo clock anyway, but this seems so extreme to feel so completely and utterly hopeless. Has anyone else had this happen this quickly or am I indeed "certifiable". I have an appointment with my GP today and have communication into my oncologist so, no need to panic, I recognize I am in trouble and looking for a solution. I s this what I have to look forward to for the next 5 years, or does it subside once it gets going. I quit taking Tamoxifen after the first diagnosis and it came back. Experiences create beliefs and my experience is telling me if I discontinue the Armidex I will have some sort of other cancer diagnosis. Thoughts?

  • MarylandBarb
    MarylandBarb Member Posts: 1

    MARIONSGIRL - I have the same exact problems as you. It's awful. Sometimes I can't even turn the doorknob because my wrists hurt so bad. I started using Deep Blue Rub by Doterra. It seems to take the edge off. It's been a real game changer for me. Except now I always smell like menthol!

  • magari
    magari Member Posts: 335

    Barb - So sorry to hear you're feeling so down, but very glad that you're seeing your GP today.

    I've been taking Arimidex for about 4 months and am doing fairly well on it. I have a bit of fatigue - which seems to be improving with time, some joint pain first thing in the morning - which encourages me to exercise, and a few hot flashes. I've been prescribed Effexor 37.5 mg to help with the latter and I think it may also improve my mood, which makes sense to me since it's an antidepressant at higher doses. Overall it's completely manageable. I am grateful that one little pill each day can keep me cancer free and try to remind myself of that when I hear myself complaining.

  • bennybear
    bennybear Member Posts: 245

    barb, I found the first few days the worst on Arimidex. I settled down after that but at first I wasn't sure. I think you have been through so much and then with a recurrence it just saps you. I had a similar diagnosis and they didn't think I needed the meds but it came back eight years later. So I am determined to make this work. Glad you are seeing your GP. I have found walkig very helpful for both my mood and joints.

  • cindyny
    cindyny Member Posts: 1,292

    barbhenz- I've been on Anestrozole daily for a few months now. The SE did diminish over time. At first I had weird dreams, and minimal sleep - both have stopped. Achy joints I had before the drug so still have achy joints afterwards. Didn't have hot flashes, got them now but still not bad.

    I'm thinking you're just overwhelmed with DX reoccurring, sticking it out with Tamx, and the disappointment of now being on the AI drug.

    You've already been through so much, I know you're strong. You'll get thru this too, your GP should be able to help. Keep us posted, we're rooting for you!

  • cbk
    cbk Member Posts: 323

    barbhenz

    I’m very sorry to hear of your depression. But you are not a cuckoo clock!!

    Is it just a very dark feeling for you since you started taking Arimidex or are there other side effects; ie joint pain, headache, dizziness etc etc...?

    I’ve had a very difficult time with anastrozole combined with my ooph, for some of us that are thrown into surgical menopause or have suppression it can be super intense!

    Please let us know how you are doing and if you can give a little more info on side effects maybe we can make some suggestions based on our experiences!!

    🤗K

  • peregrinelady
    peregrinelady Member Posts: 416
    I felt the way you do when I first started Tamoxifen. It did eventually go away with the help of magnesium and counseling. Please be assured that it is not an unusual reaction even if your dr. says differently.
  • Taco1946
    Taco1946 Member Posts: 630

    Barb - a cancer diagnosis puts many of us into PTSD, either immediately or later. The hormone blockers do play havoc with our emotions. PLEASE, get the help you need to deal with another big bump in your journey. Work with your primary to get a referral for counseling or a support group. I for one know that medical intervention helps with anger and depression. Work with your MO to find an AI that doesn't do such a number with your emotions. I know I was an absolute bitch on arimedix and am much nicer now that I'm on femora. (At least I think I am!). Stay close.

    Taco

  • Djt
    Djt Member Posts: 176

    well my eye Dr. Has found my vision problem to be some kind of age related floater. When the gel in the eye clumps together , and blocks the light from reaching the retina. My issue is that its in my good eye. The other e he has never had good vision, so now this is a real problem for me.

    Between this and anastrazole back and neck pain and heat waves, I'm miserable. I'm off the pill for 2 weeks to see if back pain diminishes. I'm at day 5 of no pill and still was drenched at night from sweat. Seeing doctor tor today.

    I'm wondering if ALL estrogen receptor Pills result in these symptoms, i.e. hot flashes, bone pain, osteoporosis. Does anyone really know?

  • viewfinder
    viewfinder Member Posts: 200

    Hi there,

    I'm starting Anastrozole this Friday but I'm scared (my last radiation treatment was last Friday and my oncologist said to take a week-long break before starting it). The side effects sound overwhelming, especially because throughout my life I have side effects to many medicines I take...and must stop taking them.

    What are some of the non-prescription stuff I should buy in anticipation of some of the side effects? Thank you.

  • cbk
    cbk Member Posts: 323

    DJT

    All I know I was a misery for months on generic TEVA brand anastrozole and switched to brand name Arimidex and I’m like a different person!

    One of my Dr said if you are miserable on anastrozole, aromosin May have a better chance of being tolerable because of how it works to block the estrogen somehow! I don’t have any first hand experience on it.

    Yeah you aren’t off anastrozole long enough to feel better. But I will tell you acupuncture cut my hot flashes at least in half or more. Totally worked.


    Good luck djt!!

  • ingerp
    ingerp Member Posts: 1,515

    Djt—my guess is the reduced estrogen is going to cause the same SEs regardless of which AI you take. That said, I know different women often tolerate one better than the others, so there would be some (additional?) SEs that depend on which AI and/or which manufacturer.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Viewfinder, not everyone has SEs from the AIs. At least not debilitating. I've been on anastrozole (made by Teva) for 4 years. I don't see anything new except maybe dry eyes and that is likely age-related. Start taking it with an open mind. If you have SEs switch to a different brand, the brand name or a different AI. But do give it awhile before deciding anything. Good luck.

    HUGS!

  • cbk
    cbk Member Posts: 323

    viewfinder

    We are all different. I had a difficult time with anastrozole but I'm pretty sure it was because I was placed in surgical menopause and then placed on it two weeks later. So I was an extreme case. Plus I had left over neuropathy from chemo!

    Depending on your side effects here's my assessment on what you can do to help yourself if you experience them.

    1. Stay hydrated, for some reason that little pill dehydrates the hell outta me. I cut down on caffeine and threw some electrolytes in the mix. Whatever works for you but drink and drink some more.

    2. If you aren't on a good food based calcium supplement with magnesium and D3 consider it with your Dr.

    3. I added in turmeric from curcumin source for joint aches as well as a high quality fish oil.

    4, Whatever you like to do, exercise and make it as often as possible. I swear yoga healed me on many levels but that's always been my passion. My PT cancer Dr. said super important to get in 30 minutes of aerobic activity a day. Apparently there have been studies on this to support that it reduces joint pain associated with als. Weight bearing exercise is necessary as well.

    5. I cannot tell you how acupuncture helped with my hot flashes. My MO actually recommended I go since she's seen such improvement with a few treatments. And believe me she's no fan of taking a trip down any holistic path!! Oh and it can also soothe those frazzled nerves and aching joints. Yup!

    6. I also take supplements for my hair but that's my own vanity in action! I haven't seen significant hair loss yet on anastrozole, but I'm not taking any chances after AC took every hair on my head!! And it's a big complaint for those taking als.

    As I said above I switched from generic anastrozole to brand name Arimidex;this was a game changer!

    That's what worked for me but my side effects were hot flashes, joint aches, cracking bones, headaches, dizziness and blurred vision! And a case of occasional rage!!

    Don't be scared, we are all here living to complain! For some of us, what would scare us more than anything if we didn't have this little pill!!

    Good luck!!

  • Taco1946
    Taco1946 Member Posts: 630

    Sadly, most of us experience some SE's from AI's. Joint pain and hot flashes are what I read about the most but there are others. Also weight gain and hair thinning. After all, they are putting us into menopause again! My SE's were different with arimidex and femora. Many have found the the manufacturer and/or taking the proprietary rather than generic helps. But don't give up before you start! Work with your MO to find the one that is best for you. People also report feeling better with the addition of canibas and acupuncture.

    I was taking chondrotian/glouscene and calcium with vitamin D before BC. I have added biotin and generic claritin. I have also upped my physical activity and really pay attention to how much water I drink each day. I have not been so diligent about diet I admit but with the increased exercise I have managed to hold my pre cancer weight.

    I can't imagine taking them longer than 5 years (I will be 76 then) but currently am wiling to deal with the SE's. I know they are no guarantee but know they up my chances for staying NED.

  • snickersmom
    snickersmom Member Posts: 599

    So for the past 16 months, I thought I was taking the Arimidex. Come to find out, I've been taking Anastrozole. Other than some aches and pains, I can honestly say I am one of those who can tolerate it without a problem. I was already on Gabapentin and Tramadol for my degenerative back issues, so I'm thinking that those have most likely helped so that I don't have any big side effects from the Anastrozole. I never thought to ask my oncologist but I sure am thankful that I'm okay with taking it. I wish you all could take it with no side effects.

  • Djt
    Djt Member Posts: 176

    I really appreciate everyone s comments on this .

    I just left one of my Drs. Offices, my radiation oncologist, and she assured me that qua.lity of life must be considered. She said to make my oncologist appointment sooner to discuss with him these side effects regarding anastrazole. She specifically.mentioned 2 other drugs that don't come with bone pain and hot flashes.

    I asked specifically if all these drugs cause estrogen to decrease. Don't they all do thiis with related SE? As. I thought the same as Ingerp just wrote above. But my dr. Said says, no, they all have a specific different effect. I'm off the drug till I see him next month.for me, the hot flashes are more of a heat wave that envelops my upper body, making wig wearing very difficult, and I feel nasty sweaty all the time. It comes over me 8 to 12 times a day, most often in the evening. My feet, hands, wrists and elbows feel like they wont bend and are very painful. How many ibuprofen can I take in one day, and Tylenol pms at night?

    Sorry about the wierd typing and bold, idk what i did, eyesight stressing me out.

  • bennybear
    bennybear Member Posts: 245

    CBK, thanks for the suggestion about the acupuncture. I would like to try it instead of more meds!

    I sure appreciate everyone’s insights.


  • MamaFelice
    MamaFelice Member Posts: 165

    Chiming in real quick on acupuncture.....just had my 3rd session and I am AMAZED at how even after the 1st my joint pains in hips (mainly upon waking and standing after sitting for a long time) have practically disappeared. More like a slight stiffness than pain. My energy and overall mood has improved as well. For those of you that haven't given it a try, please do before stopping your AI. I've been on Anastrazole since February when had ooph.

    Djt-- I have had eye issues, but I related mine more to the Taxotere as mine seemed to start while on chemo and I would feel my eyes get all wonky with each treatment. MO had me see eye doc and all was fine....he also did brain MRI which thank goodness was fine, but my eyes do have strange sensations now and again, and I attribute it to Taxotere. Did it start for you during chemo at all?

  • ingerp
    ingerp Member Posts: 1,515

    Djt how old are you? I have no idea if this is true or not but I’ve read that it *might* be that women who are older/have been in menopause longer might have an easier time with the AIs than younger women who took Lupron or had an ooph just because they already have a lower level of estrogen. I haven’t started yet but am hoping it won’t be too bad because I’ve been in menopause for 8-9 years.

  • cbk
    cbk Member Posts: 323

    InGerp-

    Of course this is the case. I had an ooph and the transition has been torture. I tolerated chemo a thousand times better and all my surgeries. Not that I'm wishing any of these on anyone, even my worst enemy!!

    You can get through it but you need a lot of support and alternative thinking!!

    Benny bear- I was in bad shape when I went for acupuncture, there is this point on inner ankle that totally helps with hot flashes. I saw a huge difference in one session. I cried so hard after my first session, like is someone finally going to help me and NOT try to throw another pill down my throat! I finally felt so relaxed and serene. My acupuncturist is a dream! Good luck.

  • jinx27
    jinx27 Member Posts: 119

    Thank you for responding,

    As a young patient that had er/pr positive bc, my doctor wanted to move forward with ovarian suppression and daily aromatase inhibitor by mouth. Studies have shown that recurrence rates decrease with this approach. Hopefully things make sense now to you. Im in chemically induced menopause via Lupron.

    It really a rollercoaster. Taking the generic drug doesn't help either, because of my reaction to the fillers. My doctor is talking about doing this for 10 years, I really dont know if I can do it. I see an acupuncturist, and have an appointment for my medical marijuana card in November. Hopefully a nice MJ strain can help with my insomnia, mood swings and neuropathy. Im also considering psychotherapy too, just to get myself aligned with this new life im living as a survivor.

    At this point im not impressed with generics at all.

    However this week I was able to order name brand Arimidex, my HSA from work is covering the cost since my insurance won't pay for name brand drug. Hopefully I can see some relief. I emailed my doctor and he stated that many patients have been complaining about the side effects from the generic Ariimidex. Most of us here use the same pharmacy and are prob taking the same Arimidex from the Accord manufacturing company in India.

    My Dr. offered to have me stop meds for a month for a break, I might take him up on it later, but I want to give the name brand a try. I really am appreciative of all of you. Without this site I wouldn't be able to discuss these things or know about the difference between generic and name brand. Every cancer patient should have access to this type of solidarity!Heart