For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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AnnC2019 - I'm at a loss for words. Any loss of my eyesight scares the hell out of me. I've had dry eye as a SE from the AI. I use drops before bed and when I wake up. I'm hoping you can find out more and avoid anything further. HUGS
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I'm close to five years on AIs. Got eye exams yearly, and every year since starting AIs (first Anastrozole, now Femara) eye changes were marked: dry, Rx changes, two years ago a cataract was detected. My ophthamologist says AIs commonly have these effects. Speeding up aging? drying everything up?
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I agree - I have aged 10 years, but I am alive. I have to put Vaseline in my nose, it gets so dry, and I keep the back scratcher handy!
I read on this website somewhere, when you get down in the dumps (look in the mirror at the new you!), remember how blessed you are to have this medicine - others are not eligible.
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Hear, hear MissouriCat! I try not to lose sight of my luck in having a treatable form of this disease.
Isn't the variety in this affliction amazing , amazing that these variations are all given the same name?
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Hi Ladies,
I am new Ariimidex unfortunately not new to this sight! I have had a breast cancer reoccurrence. Had a bi lateral mastectomy in 2004 and chemo 2005 have silicone implants. My doctors are working with me and letting me try Arimidex to shrink my tumor before surgery and radiation. If the Arimidex does not work the its chemo again. I will be on this drug for 10 years.
Today will be my seventh day on the med and so far so good. I am taking Paxil and Gabapentin to deal with hot flashes, so far so good although I can feel the flashes trying to break through! I am looking forward to any tips or tricks you ladies may have for dealing with side effects if they start. I am walking everyday for a minimum of 30 minutes to try and offset any joint pain. I have an autoimmune condition that I developed after my first go round with breast cancer and bone/joint pain is a side effect.
I agree with Mortmain we are so fortunate to have these drugs available to us.
Looking forward to connecting with all of you.
Pal
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Melmax - I take mg Arimidex brand name, which I think has fewer/not as bad SE than the generics. Even though the drug people will tell you that generics and brand name are the "same". Still have stiffness in hands, and one finger on left very prone to locking up. Also taking Ibrance.
AnnC2019 - thanks for links to Eye issues. Have checkup on Monday. They have monitored for glaucoma, been border line for a while. I think cateracts have increased over time. Age? Rxs? But not "bad" enough" to consider surgery. Biggest thing I have noticed is that a single focus glasses for distance really screws up near vision. Tried "progressives" and could not master them. Night vision does not seem as good as it used to be, and headlights at night really scatter.
Take supplements. Multi, BoneUp, Mg, D, C, Gaia joint turmeric, glucosamine-Chondroitin.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/18/2019 Swelling in R-arm, opposite side from where lymph nodes removed. Ultra sound showed no clot, referred to my DR.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery
2/7/2020 . CT showed tumor in Axilla shrunk , but also showed something suspicious in lower bowel. So....... another biopsy scheduled. DR said it should have shown up in the PET scan earlier, could be an artifact since area hard to image
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Hi, folks. Been reading/skipping through this entire thread, and have some questions.
Just started anastrozole this month. Also started Celexa because of hot flashes, but I seem to have way more nausea with Celexa, so I've started and quit it FAST twice now. The flashes interrupt sleep a lot.
But worse lately has been a weird HEADACHE. I wake up with it. It hurts really bad in the neck area, but it's present all over my head -- not a real throbby, typical headache, more a constant sensation. As much ibuprofen as I take, I rarely get headaches at all -- and I always take a big dose of ibuprofen before sleep (same time I take the anastrozole).
The headache seems to ease off a bit when I've been upright for awhile.
Anyone else gotten headaches like that, which could be attributed to anastrozole? ...And I wonder, could it be a type of JOINT pain (in any of the bazillion joints in the neck) causing the headaches? I haven't had worsened joint pain elsewhere.
Next med onc visit in 2 weeks, I want to talk about trying Cymbalta, supposedly good for hot flashes AND evidently joint pain and nerve pain as well, so if I can tolerate that, it might keep me from chucking all this anastrozole in the trash.0 -
All of my discomforts about being on Anastrozole got better in a couple of months and they've stayed at a very tolerable level since then. I have found that drinking a lot of water helps me with headache and joint pain issues. Be sure to mention all your discomforts, including the headache and its onset dates and a full description to your MO, so he/she can help you troubleshoot some solutions.
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Question - I have been on Anastrozole for seven months after being on Tamoxifen for 5.5 years. I have stiffness that effects my quality of life. I am thinking of getting off of it. A question for anyone that has been on it long term. Does the stiffness improve? Does it reverse itself when getting off? Thanks for any information.
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Definitely stay hydrated to help with headaches.
I was ex’s Effexor for the hot flashes, did help some.
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Lyn4jas, I was anastrozole for 5 years. I had some stiffness (also had some prior to BC). I took Claritin (regular NOT "D") for most of that 5 years. When I stopped anastrozole, I also went off Claritin. I recently went back on it. Amazing the help Claritin gives. If your stiffness is really bad, it won't cure it. But it might lessen the stiffness. Use the cheap generic. Hopefully, it will make a difference.
HUGS
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Mimikyu - I did a lot of research and decide to try Cymbalta, also. I start tomorrow. I am praying it makes a difference.
Annie
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Thanks for the information. I really appreciate it. Hugs to you. We all can use some.
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Wanted to thank you all, too. I gotta start keeping my beloved Arizona Iced Tea by the bed during sleep hours. And I'd read elsewhere about Claritin improbably helping with aches/pains -- I had some around here for occasional allergy wheezles, and literally just popped one with my nighttime meds before opening up this board.
It's just getting difficult to look at that anastrozole bottle and think, "but you really have to take this whether you want to or not."0 -
Hello. I'm looking for some insight to my new (about one month) joint pain in my hands. I have been on Anastrozole for a little over one year. About 4- 5 weeks ago, my right ring and pinky finger started feeling kinda numb when I wake up in the mornings. Also my hands are very stiff in the joints in the morning when I first wake up. Once I start using them, it gets better. My doctor said to hold on the anastrozole for two weeks to see if the symptoms subside. So, that is what I'm doing but it has only been about 6 days and I haven't noticed any difference. If they don't get better, they will have me talk to my general practitioner about the possibility of carpel tunnel. Has anyone ever dealt with this? Thanks for your insight!
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AI's are not good for joints. My carpel tunnel was before BC and mainly in my thumb though. Some of us have found generic Claritin is helpful for joint pain. Others have cut down on the carbs. My sister swears it's the gluten, not the carbs per se. (I'm going to try that when I get back from a vacation in April). Ibuprofen helps inflammation too. You may also want to try a different AI.
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Good information, Taco. I might try avoiding gluten too, will have to read on that.
I've read exercise helps and try to walk each day. Some folks say drinking a lot of water helps too. Doctor has told me if the side effects get too bad, to change drugs. That is an option.
I've got a big red bump on my face that I didn't have last week, and several on my chest. Some days are harder than others to keep the discouragement down, but we have to keep trying. Hugs and know you are not alone, Lisa
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Keep your chin up, straighten that crown!
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New to this site. Just started Arimidex 4 days ago. I have read a lot great deal about side effects but I have some questions and hopefully can get some insight
Are side effects worse if you had chemo first
I have Graves' disease and already was taking calcium, vit d, biotin and turmeric which was recommended. Y my endocrinologist .......believe this may help me
Already was in an exercise routine and strength training prior to mastectomy which I believe helped my recovery
Bone density was normal
I am retired but do have an outside job at a marina, docking and fueling boats, so far so good. The only problem I have had is that i did develop AWS (axillary web syndrome) but I have full mobility and exercise and work helps
Went through menopause at 52, some night sweats, but nothing that was awful, so not looking forward to start hot flashes now
So.......are there any women out there who really did not have any unbearable side effects. At my age, an ache here and there is part of aging.
Thanks for any insight. Honestly did not want to even start this pill, but I have yearly normal mammogram for decades until this year so..........
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Mimikyu - I haven't posted here in awhile, but am now finished with my treatments and got to ring the bell at the end of December. I started with Anestrozole just before finishing treatments. I do have the neuropathy associated with the chemo, but it is tolerable. What is not tolerable is the side effects of the Anestrozole. About three weeks ago I started with the bone and muscle aches making it hard to walk, sit and get up, or even lay in bed. I find it hard to turn my head more than a few inches to either side. However, I don't have the headaches you have, but I assume that yours are associated with the neck problems. I thought it might be from the radiation, but when I had a follow-up visit with the radiologist she said it was probably the Anestrozole as that was one of the side effects. She set me up with a PT a couple of days ago but that made it worse. I called the oncologists nurse to have them call me b ack last Thursday. Today is Monday so I called again and still haven't heard back from them. I stopped taking the pill as of today and it is close to 6 pm so don't think I will hear again today. I'm furious!! If I have to live like this for 5 more years, as I am now 77, that will be for the rest of my life. I'd rather take the chance of the cancer recurring than go through this for 5 years. I did try the Claritin but no relief. Feel like I am 100.
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LGBert, I completed 5 years of anastrozole in October. I already had minor aches and pains. Did the AI make them worse? Who knows? But I took REGULAR Claritin and that helped (in fact I just went back on the Claritin a couple weeks ago!). I was losing hair and I continued to lose it. I can't say that I had any SEs that were really bothersome. Keep in mind there are many of us who do not have SEs. And some that do. Each person is different. Good luck!
HUGS!
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Thanks for the claritin info. I started back on the other day....allergy season never ends in Fl, so hope it helps in other way
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LGBert, Claritin doesn't work on my allergies at all! I live on Benadryl. My PCP said I could take both - so I do! Allergy season never ends for me either
HUGS!
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Is the joint pain/problems permanent? Even after the five year AItreatment is over and you stop taking it?
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Lgbert, I had chemo first. I do think there are women that have no side effects, and they are probably content and quiet and don't come and tell us!
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I also had chemo first. Se lasted 1-2 months, then eased down to tolerable. Cat Mom is probably correct, those without se don’t come back. Some like Peg and me hang around. 😎😎
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Spookie, you and I are never going away
HUGS!
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Hello, I soon will be taking Anastrozole. I have been on Tamoxifen for 4 years, recently had an Oophorectomy and now it is time for Anastrozole. I was wondering if it would make any difference in the side effects if I take it in the morning or at night before bed? I'm not looking forward to bone/joint pain and I know everyone is different.
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Pontiac Peggy and Spookie, thank you for all you do to support us, I run into your comments every week and appreciate you both so much!!!! Hug you ladies.
TinyDancer, try taking it both in the morning and then at night and see which works best for you. Night works best for me, but I know others take it in the morning. I also take magnesium and read to take it at a different time so it has a better chance to absorb into your body. The Claritin is supposed to help with joint pain too! Hugs, Lisa
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TP get usually get chemo before AI's. I started mine about 6 weeks after Taxol and had another 7 months to go on Herceptin.
Joint pain is very common with AI's. I was taking chrondrochin/glocosime and Calcium with vitiam D before BC as I had had several orthopedic procedures. My dex scan was good though. Have added biotin and turmeric as supplements. Claritin and ibuprofen may help. Also stay very hydrated and try to get some exercise. Do some stretching before you even try to get out of bed. Many have found a low carb diet helps.
Also, we seem to react differently to the AI's and many have found that the generic doesn't work because of the fillers adding to the SE's so pay attention to the brand generic you are getting. I changed from anastrozole to letrozole at about 6 months.
Having said all that, I stopped the femora in late January, feeling like 74 going on 80. QOL is an issue and I really don't want to die of dementia at age 96 like my mother did. Mammogram, visit with MO and BS in March but it is going to take some VERY convincing arguments to get me to start again.
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