For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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sdaniel, I just want you to know you have every right to worry about your hair loss and do not feel guilty. We all have been through so much with the BC which has taken so much from us. I’m sorry I don’t have any suggestions for your hair loss and hope some others do. With regards to joint pain I have been taking turmeric and it does seem to help.
Good luck.
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Stellawt57 MACTAZ -- just off the phone with my MO. She is infuriated. She said, she personally called CVS two weeks ago, and they kept telling her it's "problem with manufacturer, it's on backorder". And because it's a voluntary retail level recall, there is no FDA nationwide warning, so MD wouldn't know. CVS is lying not just to retail customers, but to providers, which is insane. I wonder if there is a class case. I'm getting mine filled in Walgreens meanwhile...
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I talked with my MOs office this morning telling them that my script isbeing filled at my pharmacy, as they get the med from Zydus who is the lead of the recall. I also shared that they don’t know when they’ll be able to fill it due to the recall. MOs office called around & found another pharmacy to fill the script for the next month so we’ll have to see when the pharmacies affected by the recall get back to normal. I’m interested to see what brand they use & if I see any differences, the price is similar.
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sdianel, Biotin is worth a try and ask for a referral to a dermatologist. Unfortunately it is a side effect of the AIs. And it is a real problem, I think we have all been through so much that you think it’s just hair, but how we look sure can effect how we feel.
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I went to CVS and bought a conditioner that says it's for thinning hair and it's to help thicken or at least maybe make my strands stronger? Or I just paid $14. to make my hair look fuller! LOL Also bought the serum to go with it. It's quinoa and caffeine and some other vegan stuff. I'll let you know if it works. Just working into my hair was stressful as more was coming out and I got hair on the soap!!!!!!
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Ed111,I actually started a thread about it a month ago
https://community.breastcancer.org/forum/78/topics/871862?page=1#post_5408262
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Noticing some numbness/tingling in a few of my fingers, I think I read somewhere this is a side affect of anastrozole. Anyone out there can confirm this. I hate to call my doc over this, I feel lately like the girl who cried wolf with my recent concerns that I've run by them, so would rather not have to call them over this even though they are so patient with me lol.
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SpecialK - I noticed lifemath doesn't take into account herceptin. The weird part is that it gives me such better chances than predict, which does account for herceptin. Thank god I'm not british, I guess?
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Toyamjj My MO told me that tingling and numbness in fingers is not a side effect he's heard of with AI's. I have exactly that, myself, but it's a "not unexpected" (!!!) side effect after chemo (and during chemo), and I did have chemo, and my numbness neuropathy in my fingers is getting a little better now, thank heavens.
I think that you should report your symptoms to your MO to keep track of, and you should keep asking questions about this, for sure.
My MO has wanted me to report all side effects that worry or bother me. That way he can assess whether to intervene, and also can keep track of things improving or worsening over time.
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Thanks HikingLady, I actually have an appointment today and I'm going to let them know!
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Toyamjj, I have had numbness and tingling in my left hand for quite a while now. I was waking up with my left hand completely numb. Another sister on this site recommended I start wearing a wrist brace at night, which I have been doing. It has helped tremendously. I just bought it at Rite-Aid.
I mentioned that to my MO, of course, as well as my other SEs. He pretty much dismissed them all. I think we all know better!
MJ
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I go to a dermatologist who treats many patients with hair issues. I have been pleased with the results.
Here are the over-the-counter treatments he has me on: Organix brand biotin & collagen shampoo and conditioner, supplements (pills): cinnamon, fish oil, baby aspirin, Biotin, vitamin D3.
Here are the prescription treatments: Minoxidil lotion I put on my hair four nights a week, Biotin spray I put on my hair three nightsa week, Ketaconazole shampoo twice a week, and vitamin injections in my scalp every four months (not as bad as it sounds). And we just recently switched from appointments every four months to every six months because I'm doing well.
Janett2014
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Hello Everyone,
I have a question about what I believe to be my HIP area though the rheumatologist said it's my lower back. It's the area above my buttocks, but below my waistline. I have always considered this to be my hip area.
Today I had x-rays on my hips, lower back, and sacrum iliac. I was fine when I believed this pain was at the back hip area because I had read countless post of Arimidex causing hip pain. However, when I was told my sacrum was also being x-rayed and I checked for post of "sacrum pain and Arimidex", the only post I found came up in the Stage lV forums. Needless to say, I lost my mind. So, my question to all who are feeling hip pain on Arimidex, where is the pain located, front, back, etc?
Also, I have been done with active treatment since January 2018. Which included a right side mastectomy, 8 rounds of chemo, 25 radiation. I was on tamoxifen for six months
prior to a full hysterectomy in June 2018 at which time I switched to Arimidex. I also had a whole body bone scan March 2018 which was clear. Thanks for any ideas or words of encouragement while I wait for the x-ray results.
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I was at a seminar given by a MO doing research local to me. He said the standard does is 1mg, and that is backed up by 20 years of research. Apparently it is not dosed in a mg/pound of body mass as many other drugs are.
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Humblepeace: Sorry that you are stressed. You are getting it checked out and have a DEXA scan to compare it to. Sometimes women have issues in that area of the spine due to age, wear and tear of childbirth, etc. I am hopeful that you're okay. Feel free to let us know how the X-Ray went.
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I have made the extremely difficult decision to stop the AI. Thank God, per the calculators am low risk for recurrence and will make sure my mammograms are done yearly. I made the decision because my quality of life is terrible on the AI. I am 71 years old and I feel like I'm 100! I'm depressed, not sleeping well and losing my hair. Thanks to everyone on this forum for your support. I will continue to monitor this topic and read your posts.
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PS: thanks for all the suggestions for hair loss. I'm taking biotin now and will try some other recommendations.
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sd@niel, hope you start to feel better, not an easy decision. But glad your risk was low and that is a choice for you.
Re the hair Also look for shampoos with saw palmetto, rosemary, I found an Avalon organic. I also am trying castor oil on my scalp and Nioxin conditioner. I saw a dermatologist and he recommended romaine and another hormone but my MO didn’t want me to take that. There is a whole thread on hair loss. But hopefully your hair will improve off the meds.
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Humblepeace - I had an MRI of my right hip recently, because I have both-sided hip pain when I sit too long (thanks AI) but only one side hurt consistently and more with exercise. It hurts in various places, front, back, side, deep, it's very elusive. MRI revealed I had tendinopathy of the gluteaus medius, which means I have more physical therapy in my future after I (hopefully one day!) finish PT for my arm/shoulder/breast/chest that I've been in since ending radiation. No idea what caused it but it seems appropriate that all my troubles are on my mastectomy side of my body. A massage therapist I see conjectured that it could be from some scar tissue in my abdomen (from DIEP reconstruction) causing my pelvis to go out of alignment and resulting in hip problems. I wonder if your hysterectomy surgery has anything to do with it?
Prior to breast cancer, I had sacrum issues that were caused by my sacroilliac joint going wacky during a pregnancy.
I think there's a ton of different ways to have back or hip problems that have nothing to do with breast cancer, so try not to go there if you can!
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sdianel- Best wishes to you. You have to do what's right for you, no judgement.
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I’ve been taking anastrozole since March. My joints ache, feet hurt, back is sore. Seeing all your responses that are similar doesn’t make me feel better, just makes me realize I’m not alone. I wish all of us to feel good again
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This is a damned if you do, damned if you don't, bargain with the devil, for sure. I take my Anastrozole every day, and am glad that it (statistically, who knows about ME) protects me (= gives me good odds anyway) against a "recurrence." (= metastasis/Stage IV) I am absolutely more comfortable if I do my 1 hour of exercise (strengthening + aerobic) every day. On the days I cannot do exercise, my joints are all miserable. I'm rebranding this as inspiration to exercise, when, in fact, it's survival. I am much more uncomfortable on the days when I cannot exercise. In fact, more exercise is always better, so I'll take this not-gentle-nudge which makes me prioritize exercise to manage the AI side effects.....
Just like Joytxs, I feel grateful to know that I'm not alone in this issue....
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Hiking Lady - I love the way you put that! I second the rebranding idea.
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2002--coincidentally, I've been dealing with a hip/inner thigh issue pretty much since I started Anastrozole. I can't *exactly* attribute it to that--it's on the side I had knee surgery 15 years ago, and I'm sure I've been operating that leg a little oddly ever since (in fact, when I went to my PCP for a PT referral, she said, "well *that* hip sure operates differently"). I did PT for about a month and it was helping, but then I went on vacation and never re-started. The pain is back now, and I'm wondering if I have the energy to start up PT again (or, really, I could be doing stuff on my own). It's true what they say--growing old is not for the weak.
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Good for you to make the decision that's in your own best interest. I hope your SE improve quickly.
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Just refilled my prescription and rather than getting the Accord generic, which I have been taking since July 2017, I got one distributed by Rising Pharmaceuticals, manufactured by Natco Pharma Limited of Kothur, India (nice of them to put all this info on the label).
Has anyone else gotten this generic? I’ll be curious to see if my SEs change (sore left knee, tingling and numbness in left hand and wrist, foggy brain, dizziness, dry cough).
M
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I'll weigh in on my own experience, knowing that every person is different and there are so many extenuating circustances. I started Arimidex on June 26 2018 —so just over a year. I am not someone who usually gets side effects from meds, and I also don't read about possible side effects until after, because after going through surgery and treatments for cancer ( and I think I'm not alone in this) I am sick of scrutinizing every single speck and movement and feeling and either equating it with the cancer or worrying that it means something. My feeling was - this has been determined to be the best treatment for me, I will start it and see what happens. If symptoms come up I will look into it. Anyway...
I had low level nausea after about 2 1/2 weeks that lasted maybe 3 months? possibly 4 months. By low level I mean I never threw up, but it was general nauseous feeling like i *wanted* to throw up. What was odd for me is that I take my pills every moring about 6:15am, and the nausea did not kick in for me until after noon. No idea why. I experimented with taking it at lunch time, but didn't like having to take my pils with me everywhere. I drank a lot of ginger ale, ate some crackers, but eventually what worked for me was that when it kicked in, I would get up from my desk and take a brisk walk across campus. And I mean brisk, almost power walking. And eventually, the nausea simply stopped! Hooray!
About 6 months later I have the standard side effect - joint pain.hands, hips, knees, ankles (head, shoulder, knees & toes, knees & toes!
) As someone above said also, I too already have osteoarthritis along my back, and arthritis in my left thumb - which stinks as I am a crocheter) so i am used to some aches and pains but this exacerbated them. I have a high tolerance for pain, but it started impacting my life in that I couldn't sleep, my hips and knees in particular feel on fire. I used to be a stomach sleeper and after the surgeries can't comfortably do that anymore, and I find it difficult to sleep on my back. So whatever side I sleep on feels on fire. I have been taking advil every 5 hours, but eventually 2 weeks of hobbling around like I'm 100 years old, and the familiar locked up hands where I can't fully open or close them - I finally called the doc. They gave me a Rx for tramadaol which I tolerate very well. I take only half a dose and it helps me sleep more comfortably.. I ice my knees, but really getting up and walking is the only thing that helps me. They had me stop the Arimidex for a week, until the pain got under control, and I restarted it this week. At a checkup yesterday my Onco said if the acute pain comes back, she would switch me to Tamoxifen, which I really really don't want to do. I've invested a year in Arimidex and to me, the tradeoff of the joint pain is better than the side effects of Tamoxifen. My sister is a breast cancer survivor also - and was developing endometrial cancer - thy believe from the Tamoxifen. I say try it. Overall - listening to other people's stories, my side effects have been minimal. Everyone is dfferent. I vote for try it, and don't front load yourself with side effects, I really believe sometimes they can become a self fulfilling prophecy. I have hot flashes now also, but if I had gone through menopause I would have also! I take calcium and high dose vitamin D with the arimidex and is it helping? I can't say for sure, but it's def not hurting. All of us here have gone through so much already, we can take it, we're the lucky ones.
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Macushla, I totally understand what you're tolerating with your arthritis. I had been taking tramadol for my arthritis prior to my dx and I took it only when I had extreme pain. I am also was experiencing other SEs and decided no more Rx and had my MO refer me to an integrative dr. I started acupuncture in mid May and that has helped with all of my SEs, my insurance pays for 24 treatments per year. I started with 2 treatments each week for a month and am going once a week now. Once I go back to my teaching job I'm planning to go every two weeks for the remainder of the calendar year. I also take curcumin and eat very little to no gluten to help reduce the inflammation. I have found all of these interventions have helped to make my SEs very tolerable or manageable so I still have a good quality of life! My DH is thankful the change so I'm more tolerable to around, love him for his patience.
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Stellawt59 - my "attitude" got much better when I switched from anastrozole to femora. I don't have quite as short a fuse.
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