For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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kimmh012 - please keep us posted. So far I am tolerating SE from Arimidex, but hands/fingers definitely getting achier. Not metastatic, but does your Onc seem to think Faslodex is better. Are injections the only option?
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Kim, I"ve seen posts from Salamandra whose Dr. let her switch to Faslodex due to side effects from other meds.
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LeesADee - I just saw your post on working with a nurse advocate on getting a lower price on Arimidex. I will have to look into that. Eagle Pharmacy charges $2/day. My insurance would charge a lot more. Drug prices. When was first prescribed Ibrance, the Oncologist sent it to the pharmacy she chose, said there was some kind of grant. I paid nothing. Each delivery is for 21-days plus 7 days off (so one about 1 month) My Insurance contacted me and told me I was required to use the Insurance "Specialty Pharmacy", and I now pay $50/month.
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BlueGirl, have you looked into the "help" offered by Pfizer? My insurance covers all but $70 of the $14,000 cost each month. Pfizer has this co-pay assistance (with no income requirements) so my out of pocket is $0.00. I do pay a bit for my Arimidex, but it's somewhere around $8.00, I think. I'm using a Specialty Pharmacy, too. I started with Diplomat but got switched to Ingenio. Still no payment required from me.
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Sunshine - thank you for the reply. My Insurance covers everything but $50. But it is increadible to hear about the differences people pay for the same drug, procedure etc. We have a long ways to go with health care reform
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I agree, BlueGirl. It can be done so much better.
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I have been on Arimidex(Anastrazole) for almost a year. 2-3 weeks in to treatment, the hot flashes increased 24/7. I experience sleeplessness and severe joint pain. My digestion has changed and my tolerance for spicy food has decreased. Today I had an episode of what felt like low blood sugar. I had a similar episode years ago. And btw..I am not diabetic...I was told that all anti-recurrence meds have similar side effects.
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Being on Arimadex generic I seem to be losing more hair. I used Rogaine for years but not since chemo and anti-estrogens. Has anyone had success with Rogaine after using AIs?
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I have been on Arimidex for 1 year now. I find it very interesting and relieving that the symptoms I have been noticing are real. My ankles and knees are stiff and painful when I get up from sitting for a long time or sleeping. It does get better quickly. The other day I woke from a nap and my middle finger was "locked" in place. I had to open it with my other hand. I am also experiencing hair loss, very dry skin and dry eyes. Is this normal as well?
Thanks,
Jen
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jen6414 - joint stiffness seems to be very common with AIs. At first I thought brand name Arimidex would be better than generic, and for the most part it is, but I do experience stiffness in hands, and one locking finger that I sometimes have to unlock with the other hand. Hair loss as well. I think turmeric (powder with black pepper added) and turmeric supplement helps. I tend to notice the absence rather than presence of it in diet. Not sure if glucosamine/chondroitin helps, but I take it. I try to stretch regularly, and exercise daily. I try to stay hydrated, but sometimes I realize I have not not drunk any water most of the day. Sometimes treat myself to "Hint" water (no sweetners or carbonation, but what is essence of some fruit?). In summer kept a jug of water with cucumber slices ready, the cucumbers helped to take the taste of the city out.
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jen6414, I also have the stiff joints. I take a yoga class once/week and Tap 2x/week. Also try to get on my treadmill a couple of times a week. I use Ovation Cell Therapy to help my hair. I had dry eyes before cancer, and the anastrozole has made it worse. I use Systane Ultra drops during the day and Systane pm ointment at night. When I can get it, I use the Teva brand anastrozole. It uses less fillers, and my symptoms are not as bad with Teva. Next spring I will be at 7 years on anastrozole, and I'm hoping to stop it at that point. During my 7 years, the only symptom that was getting unmanageable was depression/anxiety/mood swings. I started taking buproprion (generic for wellbutrin) about 2 1/2 years ago. I saw an improvement with the first week! Even before cancer, I took vitamins & supplements, and have continued.
This forum has been helpful to me, so keep coming back! Thank you to all the ladies who have posted.
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BlueGirlRedState and Pinklonghorn, thank you for responding. I have found this website has very good information!
Have a great day!
JenB
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Its been awhile. Since I last posted . Ive been on real arimidex 3 yrs. Mostly aches. Foggy brain and pending osteoporosis.. Not fun.
Anyway a few times I've taken a week break. Start feeling like my old selfafter a few days but By end of week I get hot flashes
This baffles me as I don't get them while taking pill..
Hot flashes happen with low estrogen. So at 66 is my estrogen lower off pill??
I had stupidly taken HRT for years which I think contributed to my BC DX ..
Anyway any feed back would be appreciated
Mamaoz
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Anastrozole has been the worst therapy far and away on this ride. I’ve always taken vacations from anastrozole at the minimum of two weeks and often more. I have felt so terrible coming off the drug even worse than being on . But once I went back on I felt amazing for a few weeks and right back into horrible side effects!!
That said, I’m not sure why you would illicit a new symptoms when off the pill, but going on a few vacations I know with the drug, with the half life, it’s not out of your system for the minimum a couple of weeks.
And even longer depending how you metabolize.
Honestly if I wasn’t so high risk I’d ditch it now. I contemplate it every day.
My breast surgeon says I should think about the every other day approach. Considering my severe side effects!
Oncologist is not on that program, but I’m definitely exploring with more input in the coming months
Love and best to you!
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I started taking anastrozole a week ago and am pleased to have only minimal side effects so far - slight headache/dizziness/drowsiness mid afternoon after taking the pill in the morning. One afternoon I was very moody but only this one time. So far so good. My oncologist told me that older women (I'm 72) have fewer side effects.
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Dreamhome, I was 69 when I started taking anastrozole, finished at 74. I had few side effects that were bothersome. I was creaky getting up in the morning but that was helped by taking a REGULAR Claritin daily. Sometimes trigger finger. I went in not expecting to have a problem that was insurmountable and I didn't. Don't anticipate anything but having 5 years (or however many your oncologist recommends) of preventing a breast cancer recurrence! Good luck!
HUGS!
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Thanks for the encouraging report!
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Recently I read that prostrate cancer might start producing its own testosterone even though an Rx is used to stop/block production. Has anyone heard if ER+ cancer might produce its own estrogen in response to AIs or Tamoxifen? I did not know this before seeing my oncologist earlier this month, so did not have a chance to ask her. My estrogen has never been monitored before/during Tamoxifen or AI. When I ask, I'm told that monitoring estrogen is not part of the standard of care. So it sounds like I could pay for a test with the usual blood draw for WBC. I will post this on other AI and tamoxifen threads, sometimes it seems like information is scattered.
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Hi Everyone.
I was on Tamoxifen for about 15 months. Starting having some worrisome side effects, so MO changed me to Anastrozole three months ago. Last Friday I started to have some spotting. It got progressively heavier. I haven't had any periods since March of 2019. I called my MO and he wants me to do Labs on Monday and see him on Wednesday. Has anyone else had this happen to them? If so, what were the results? I don't even know if this is related to the anastrozole.
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DaisyGurl- I has some bleeding, spotting, pink tinge, after intercourse. But I was also using Estring. Long story short, I stopped Estring and all of that stopped. Contact your GYN, it may have nothing to do with Anastrozole. Best of luck to you!
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I've been taking Arimidex for 3 years. My experience with side effects has been tolerable. Every few days I have to take ibuprofen for joint pain. My right hand is stiff especially in the morning and my left knee gives me some trouble but not enough to prevent me walking. The biggest concern was fear of bone loss. I was recommended to take Prolia when Arimidex was started, but I begged off until after the next Dexa Scan It was a little worse but still in the osteopenia level. Having tried Calcium citrate, Calcium carbonate as well as Viactiv I decided to be consistent and began Viactiv twice daily. My last Dexa Scan was NORMAL! I could not believe my eyes. My oncologist asked me what I was doing. The only change was the Viactiv.
Now I'm having hair loss!!! Guess you can't have everything. But doesn't keep me from trying. After my hair came back from chemo I thought I was done with that. I'm trying to be positive...would rather have normal bone density than a full head of hair. My next project is to research hair remedies. If anyone has a suggestion please share.
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Twin2Sister - with you on bone loss and hairloss with Arimidex. More concerned about bone. Weight bearing exercises are supposedly the best, but AI can take its toll. Don't know when next bone scan. Been on AI 13 months. Hairloss.... After struggling to keep it during chemo with cold capping, and finally starting to get it back, AI is taking it away. Keep hoping for that magic shampoo or supplement. Biotin seems to help with nails, but I think I shed more than my cat or dog.
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I, too,was having hair loss. My daughter gave me a shampoo she used after she experienced hair loss after weight loss surgery. It's called Purad'or. It has apple cider vinegar, biotin, caffeine, castor oil, and 15 DHT blockers. You have to look for the one with these ingredients. I went to the Purad'or website instead of Amazon - they had the one with all the ingredients and it was cheaper. My family has commented that my hair looks better and I have stopped shedding. I also take biotin. It maybe coincidence that my hair stopped falling out but I think the shampoo helped.
My hair dresser did show me how to use L'Oreal Root Cover Up.It really makes your hair look thicker. Just spray it on the roots in the thin spots and it makes a world of difference. I use it when I need a a boost of confidence.
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Annie60 - thank you for shampoo suggestion. Have you heard any concerns with DHT blockers (testosterone ?)
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I have not. I need to research this
Annie
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I just joined so not sure if I'm using correctly but I had a few questions on behalf of my mom.
She recently had chemo, surgery, and radiation. We just started the anastrozole 4 days ago. She's already experiencing some side effects and I was wondering if it was just her body adjusting to the medication or if these were long lasting. If long lasting effects, how long - would it be for the next 5 years or do they subside after a few weeks/months?
Also, have any of you utilized serums/shampoos that encourage hair regrowth? We shaved her head very early on in the process and it's growing back already, yay! Just wondering if there were products that would help it grow back faster/healthier/thicker.
Thank you in advance!
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sro96, I'm sure others will chime in, but as side effects go, everyone is different. Some people have side effects initially that improve over time, and hopefully your mother will fall into that category. For others the side effects will continue or get worse as time goes on. I am unfortunately I'm the latter category, and I've been on it about 16 months or so.
I'm afraid i don't know much about the hair regrowth, but there are a lot of threads on that topic that you can check out if you do a search for them. I do find that the anastrozole makes me lose more hair, so it's probably good to get out ahead of it if possible.
I wish your Mom well. It's awesome that you're so supportive of her during all of this.
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I am thankful that bone density test after three yrs of Arrrghrimidex is normal for my age and very little probability of ostereoporosis or fracture. I weigh a lot and very conscious of weight gain. Guess I should stick it out as long as possible.
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sro96, Unfortunately for me it started right away and only gets worse, not better. I tried aromasin for about 2 months and Arimidex for about 3 months. I'm on Arimidex every other day now, that helps a little, but not standard of care. My Dr. said most people do better on aromasin, so you can try that. Aromasin gave me headaches, dizziness, insomnia. Arimidex is better for my head but worse for my arms and feet. Per the suggestions I've read, I'm going to try brand name arimidex next. Then Femera. I"ve read some people do better on different ones.
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I am on exemastane which I think is generic Arimedex. I am having so much joint pain, stiffness and gait problems that I'm thinking of going off for a month and see if anything improves. I'm due to se MO in Jan but don't know if I can wait that long to do a desist. Has anyone had that kind of reaction to exemastane?
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