For Arimidex (Anastrozole) users, new, past, and ongoing
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Thank you Grandma:))
Kathy
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Those ladies who take Fosamax must remember to take extra calcium with Vitamin D - The fosamax binds to the calcium for bone strength. I had to be on steriods for an extended time and taking 3 calcium tablets a day. I must admit some days only 2 but my recent Bone Density was good - even some improvement.0
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I just got my Bone Density results. I have osteopenia. I haven't started taking the hormone replacement yet because my concern about my bones. My MO said that I should start to take something for my bones. My regular doctor wants to get involved in it. So I will have to make an appointment with them before I can start that. Then I guess Arimidex or something like that.
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My anastrazole experience:
first 6 months - moderate joint pain, hot flashes, weight gain, fatigue
second 6 months - hot flashes went away, joint pain became milder, neuropathy began in fingers. Lasted 2 hours every morning.
third 6 months - neuropathy increased. numbness and tingling 24/7
right now my 19th month - Severe hand pain, unable to open packaging, use writing tools, work keys & locks, Wake up several times a night wanting to scream from the pain.
my primary wants me to change medications. my MO says as long as I can still dress myself, I should continue. I hate the pain, but a return of the cancer would be a million times worse. And a different medication would have side effects too - maybe not as bad, maybe worse... Anybody want to add their opinion? I need advice.
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Hi denise...Im so sorry you are suffering. I have neuropathy and its the pits. Wow your docs comment about not being able to dress yourself was really inappropriate. I wonder if it was him/her that they would feel the same? At least your primary is willing to work with you. I do not take anti hormones but there are many women on this forum who have switched meds and/or manufacturers and did better. IMO you should not have to live like this for another 3 1/2 years! QOL is important too. Good luck and keep us posted.
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KarenR0618 I had osteopenia even before chemo although I hadn't gone through menopause. My spine finally went into osteoporosis after 3 years on Anastrozole. On prolia now. Helped my hip (less osteopenic) but my spine hasn't improved. Almost stable though
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Lago, I was told my spine was good. It was in the hips. I am so scared to go on Arimidex or whatever they put me on. I worry about the SE. I know not everyone gets them. I need to make an appointment with my primary and see what to do first.
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I just had my first follow up appointment with my MO since starting Arimidex five or so weeks ago. She asked what kind of side effects I've experienced so far and when I said that I feel I'm tolerating it very well, she seemed concerned. After thinking for a bit I told her that really stiff hands woke me one night recently and she was relieved and said, "Yep, that's the Arimidex!". She said if someone comes in after being on the drug for a few weeks and reports zero side effects, that's not a good thing, it's not doing its job. I told her that I'm not one to complain so I had to dig and come up with something else to "reassure" her
I mentioned that my hot flashes, which had subsided for the most part, were returning and she was happy to hear that as well. So weird 
but I get what she was saying - she needs "proof" it's working. She made it very clear that there will be side effects with this drug, but most should be tolerable. She said if I can't function, then that's the time to call her (in between my regular six-month check ups). She mentioned some people contact her because they're having hot flashes, and she's was, like, ??? That sounded similar to the "if you can't dress yourself" remark, although my MO wasn't unkind in her delivery, just telling me when to call her and when not to.I had a blood test earlier before my appointment to check for kidney function and calcium levels. Both were fine and I'm good to go on the Zometa. She mentioned there's no sense of urgency with starting it and that it can be at my convenience, so we decided on August after I've completed some dental crown work I'd like done in June. When I mentioned we're taking vacation in July, she said let's do August, then - so there's literally no urgency. She really touted its benefit in preventing breast cancer recurrence in early stage, post-menopausal women, and there is the added benefit of its preventing bone loss, but she said that's not what she prescribes it for, as she rarely sees fractures caused by Arimidex - she prescribes its mainly for the recurrence prevention in someone like me. She mentioned it's a 15 minute infusion - I'll see her the day before and have my blood checked - in other words, I'll see her only twice yearly going forward. I'll be on the drug for 3-5 years, but she made it clear that if I don't tolerate well for whatever reason "Off you'll come".
I like my MO very much - she's very engaged when we speak, does not rush me, and explains things in great detail. Anyway, I thought I'd mention how my appointment went should anyone else be at this same stage of the game. Everyone will tolerate Arimidex differently, of course, and I'll be eager to compare notes with everyone as the weeks/months/years go along. I hope my future side effects don't become intolerable as I know they have for some.
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I find my primary care physician of over 20 years more understanding and knowledgeable - He knows me!0
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SAVE MONEY ON YOUR PRESCRIPTIONS.
Been quite some time since I've posted. I'm in my 4th yr of anastrozole and have been doing well.
Wanted to pass along some insurance info I recently discovered. Under my current insurance I have a co-pay of $92.45 each month for my on-going prescription of anastrozole. I happened to catch an episode of Dr. Oz which was dealing with the high cost of co-pays for prescriptions. They were speaking of a new program, Blink Health, which lowered costs whether you have insurance or not. I looked into and this month I processed my refill for anastrozole under Blink Health. I paid ZERO for my refill. AWESOME. Take a look at the website, blinkhealth.com and see what you out-of-pocket costs will be. You may find it is less than what you current co-pay is. Have your pharmacy process your refill under your blink health group number and save money. I did and it saved me $92.45! This is NOT A SCAM, it works!
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Terrible that your QOL has been so severely impacted denise4603. After just a few months on Anastrozole I was having some pretty awful side effects too. I could hardly hobble, couldn't open jars, bottles etc. I couldn't hold a pen either. My Oncologist put me on a "drug holiday" for a couple of weeks and when I restarted I took brand name Arimidex. The difference was astounding. I am so much better but had the SE continued my Oncologist was happy to change me to another AI. You should not have to live with pain like that. Hugs Donna.
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Agree about possibly changing AI's. I was on Arimidex for 3 months and the joint pain and hot flashes were TERRIBLE. The hot flashes were embarrassing...all of a sudden even my neck was sweating and in 5 minutes my hair was soaking and dripping...I could not take it. Started a dif AI last month and in 3 weeks- everything is better. Have started going back to the Y for Zumba and walking- heading to a spin class tomorrow- and I just could not have done it while on Arimidex. Now to get the 15 pounds off that I gained in that same 3 months!
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My anastrozole when I have to pay my co-pay is $3.52 for thirty days at Costco.
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I have Express Scripts...with our plan generic is free, but I take Brand name so py $20.00 a month...Great coverage.
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KarenR0618 the only time you lose bone quickly is right after menopause, and chemo also does a job on the bones. I went through chemopause and still remained osteopenic. On the AIs the loss was gradual I did do 5 years of AIs (finished earlier this month). After Anastrozole I went on Exemestane. If you have bone loss they will treat it. Easier to treat a little bone loss than metastatic breast cancer!
Cheaper Drugs
Also check out GoodRX. I had to do that for several months before I switched insurance companies. I would save $100 a month using a coupon I printed out from GoodRX.0 -
denise ... Your MO is unreasonable.. I switched to femara because of side effect and hve no where near the same problems. Been on femarafor 2 months insomnia stopped, just a little stiffness in hands but if i strt taking Claritin again i am going to bet it goes away. Its your body, you can change MO also.
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I have been on anastrozole for about 7 months. My first 3 months on Anastrozole were un eventful. I tried Femara for one month after an allergic reaction to Anastrozole when the pharmacy switched manufacturers to Accord. Femara triggered sever night sweats and other very uncomfortable side effects so I switched back to Anastrozole by Teva I still have night sweats on Anastrozole but the are not as severe. (Didn't have them before Femara). My concern is I have developed pain in my hips when sitting along with a burning sensation down the tops and side of my thighs. Mostly when sitting. Walking and standing relieve it but as soon as I sit down it is back. Both sides. I have also started getting leg cramps. I am taking magnesium and turmeric curcumin. I see my regular doc next week. I was wondering if any one has experience the hip pain and burning sensation and found a solution. Standing and walking all the time is tough as I have to drive a lot for work.
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That is true Lago. Thank you
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So I'm getting a little bit concerned originally the doctor had me on tamoxifen which did not work then they put me on anastrozole. In February I stopped the anastrzole and had my surgery, just finished my chemo now I'm getting ready for radiation. Dr. wants to put me back on the goserlin injections and femara for 12 months.
I am classified as cancer free but my ovaries don't want to shut down.They are concerned about reoccurrence.
I was really looking forward to finishing radiation and being able to look back and say okay now everything's done and I just have to see the doctor every 3 months and take this pill. I'm really concerned because now for the next year they want me to continue with these injections. I'm wondering if anybody else out there has had this problem and did they end up having your ovaries removed and if so what was the pros and cons to having that over having the injections for 12 months??
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I had similar concerns and my doctor prescribed Vit D, 50,000mg -once a week- and I feel better now.
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HappyHammer,
What are you taking now?
So far I haven't had any terrible problems with Arimidex. No hot flashes, however I have noticed a gradual increase in fatigue and stiffness, but not like some of the ladies here. The fatigue is the SE I'm having the most problems with
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Hi All,
I will start taking Arimidex June1, 2016...just a good date to start. I can tell you what would be helpful on this forum is to list all of the things women have done that helped ease the SE from this drug. It would be better than having to read through hundreds of posts to try and get suggestions on how some women have helped themselves beat the SE.
From some of the suggestions I have learned to:
Take the pill in the morning to help the sleep problems, and if that does not work try other times.
Exercise, and do weight bearing to help the bones.
Take D, Calcium, Glucosamine, potassium and magnesium
Lose the gluten, I am starting Atkins diet to get off 50lbs so that will be easy to lose the gluten.
From Jerseygirl9: Hydrate and then drink more!
From thj: Take Name Brand not generic. I have seen this on other forums I am planning on Name Brand.
Please, add to this list so others who are going on this drug will learn what has worked for others so they can try relieve their SE.
Thank you all for all of this information and encouragement...this is the first place that I learned there are women who are not affected by SE from this drug. I wish you all good health, happiness, and love in your lives!
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hydrate until you explode, and then drink more.
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Added your suggestion to my list....thanks Jerseygirl9. I am going to try and do all you guys suggest if I can. I am 66 with a 22 yr old son still in college and his dad my husband died of Pancreatic Cancer 7 years ago. I am trying to be here for my son as long as I can!
Again thank you!
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Jerseygirl9, looked at your diagnosis and wondering why chemo? My tumor was left 2cm invasive stage1A grade1 0 nodes and I had my right breast removed as well. My Oncotype was 11? Just wondering about the chemo for you since my doctor did not recommend chemo?
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I walk, I take mine at night-insomnia is not a problem ubless coffee or caffeine after noon, for occassional stiffness in ankles or knees Aleve, I take brand name- SE awful on generic, extra calcium, vitamin D, bone scan every year. My SE are all doable....far better than the breast cancer. Stay positive you may have little to no SE!
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I take mine in the morning. Other than a bit of stiffness when I get up in the morning which I had long before anastrozole, I have no SEs. While trying Claritin for my allergies (which it didn't help), I found it helped some with the stiffness. I take Teva's brand which most ladies on this board recommended as causing the fewest problems due to fillers. DenvMom, keep in mind that not everyone has SEs and those who don't don't post very often here. And that's not to down-play the SEs of AIs which can be devastating as we see here. The list of helpful things is a good idea.
HUGS!
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Busgirl, I have been on ovarian suppression in order to take anastrazole because tamoxifen also did not work for me. My onc thought I would be on for a year. My breast surgeon said do two. I've now been on for 2.5 years and no signs of menopause when they measure my bloodwork, so I either will continue on the ovarian suppression, or I'm starting to think maybe I should just have my ovaries out and be done with this.
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Onerx is a good program to compare pricing with your insurance discount. I love it
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Denvmom, i was on the fence about chemo, very hard decision, if i didnt have 2 types of cancer as dx, i might have skipped. But with the high hormonal markers my MO wanted to be cautious. No regrets now, cause i am a worry wart. If i didnt do chemo, i would always be asking myself? What if? No win for me.
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