For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hi kkhalle. I have been on Anastrozole for several months now after blood tests showed I am now post menopausal. Was on Tamoxifen before that which stopped my periods altogether. Since taking Anastrozole, I started getting joint and bone pain, especially in my wrists and ankles. I feel 90 instead of 54! I decided to stop it for a while upon nurse's advice to see if joint pain decreased. Nurse suggested 2 weeks but I have been off it for about 5 weeks. My joint/bone pain is no better and just yesterday I started lightly bleeding after 3 years. I am waiting it out a few days, will probably start back on my meds, and if still bleeding, call my OB. It is confusing as to what causes what!
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ElishebaJoy - I quit AI after a few months because of joint stiffness, trigger finger, and pain in fingers. Those SEs came on almost immediately after I started AI. I considered switching to a different generic or brand name, because several women on this forum report that it made a huge difference. You can get the brand name directly from the manufacturer (From Eagle pharmacy in Florida) if your DR sends in the Rx. It may be cheaper for you to purchase directly than through insurance (If I bought directly, it was $1/day, vs $7/day through insurance). After several months of no hormonal drugs I asked for Tamoxifen. My fingers were feeling much better, and I just did not want to chance AIs. I do use turmeric, both as supplements and adding to meals, I think it helps. I do wonder though if creeping weight gain and frequent urination may be do to Tamoxifen and/or if just makes those issues worse.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals.
2009 ER+ left breast. 52 yrs. Lumpectomy, 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. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger.
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I hope im posting on the right thread. My cancer was 100 percent er and pr positive her2 neg. I had a total hysterectomy between my exsitiononal bx and blmx. Sm i likely to get on one of these A drugs instead of tamoxifen? I see my oncologist monday..just curious!
Thank you!
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Yes, now that you have had your ovaries removed, you are able to take an AI drug if you would like. That is a discussion you should have with your oncologist, weighing the pros and cons of both Tamoxifen and an AI drug.0
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I started on Anastrozole on January 1st of this year. I had been on Letrozole since last March and the joint pain ( hips, right shoulder, thumbs, knees and ankles), muscle pain, word retrieval issues and dizziness made life hard. So I switched and fingers crossed I think I’m doing much better. Head doesn’t feel as foggy. Joint pain is much better. Hopefully it will last!
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I just started taking an Anastrozole 1 mg daily. I take my pill at night to avoid some of the knee and shin pain but the pain is constant. Unless this becomes better I can’t imagine taking this drug for five years. For such a low grade cancer I have had surgery, found to be triple Her2 positive, had Taxol chemo,developed neuropathy.Taken off Taxol and put on Kadcyla for 2 doses. Which made me really run down. Developed pneumonia and spent two days in the hospital. But I am past that. Now on to radiation for 3 weeks and Herceptin everything 3 weeks until September. I must do something special at the end of my treatment
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Check with your PCP, that could be arthritis.
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it is arthritis Ki have osteoarthritis in both knees but it has gotten worse with Chemotherapy and now Anastrozole
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Cjzak10: Yes. Now you can definitely go to an AI. I have been on anastrozole for 10 months. There have been side effects, but I am sticking with it. I take my dose every other day in the p.m., that's what I seem to be able to tolerate.
Spookie's Mom: Hi. How's it going? Happy New Year's!
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asknomore2 Lots of people report that AI side effects lessen with time. Several weeks and months can make a difference, if you can hang in there.
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hi to you! 12 days in forgot being new year😂. Haven’t written check yet.
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asknomore2 - I've been on AI's for 16 months and the side effects have stabilized and are quite doable. Claritan helps and exercise as much as you can helps keep things supple. I found this out when I was having issues and then went on vacation and was activ every day - felt so much better and then made more of an effort to do something each day. Good luck!
PS - there is a thread post your daily excercise if you are so inclidned. It's a motivator for me.
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Was taking Anastrozole since 8/1/18 along with Lexapro 5 mg. 12/1/18 increased dosage of Lexapro to 10 mg per Oncologist for relief of hot flashes. 2 weeks afterward I broke out with huge welts and rash all over. 12/16/18 I completely quit Lexapro. Treated with Medrol pack and Triamcinolone cream. Nearly a month later I still have a rash, not as bad though. I decided to stop the Anastrozole to see if that's the cause too. Appt with Oncologist 2/14/19. Has anyone else experience skin side effects?
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Was taking Anastrozole since 8/1/18 along with Lexapro 5 mg. 12/1/18 increased dosage of Lexapro to 10 mg per Oncologist for relief of hot flashes. 2 weeks afterward I broke out with huge welts and rash all over. 12/16/18 I completely quit Lexapro. Treated with Medrol pack and Triamcinolone cream. Nearly a month later I still have a rash, not as bad though. I decided to stop the Anastrozole to see if that's the cause too. Appt with Oncologist 2/14/19. Has anyone else experience skin side effects?
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Hi Everyone- this is the paranoid new AI user checking back in lol. I've been on Anastrozole for a few weeks and all seems fine. Maybe some weird joint/bone discomfort but nothing that wasn't happening with Tamoxifen. I did just add Claritin to my pill routine. The MO's NP said it wasn't necessary but sometimes I go with what the BC sisters say first....can't hurt lol.
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SusieB2, welcome to our community. Please take a look at this page: Arimidex. It says to call your doctor if you are experiencing a rash or hive, so we are glad you have an appointment this week. Hopefully they can find a solution. Please keep us posted
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I was on anastrazole, and now am on letrozole. I have had itching (mostly upper arms) and more recently hives on thigh and elbow. Sounds like I should be contacting my MO about it.
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I hope someone in this forum can help me. I have been on Arimidex since August 2017 (switched to name brand two months ago. In October of last year, I started having hip bone pain and elbow pain, as well as some sort of scalp dermatitis near my neck. MO fears bone Mets and scheduled me to have a bone scan on January 28. In the meantime, I’m very scared. Has anyone in this forum had hip and elbow pain while taking Arimidex without bone Mets? MO said arimidex does not cause pain in hip and elbow. PLEASE share any information and personal experiences. Thank you!
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I've been on anastrozole for 3 months and have noticed marked dry eye. I have a consult with a cataract surgeon in late Feb. I sure hope this doesn't affect having cataract surgery. Anyone have cataract surgery while on anastrozole? My only other side effect is monster hot flashes that MO said should start to subside. Hope so. Only getting 5 or 6 hours of interrupted sleep. Feels like when my kids were infants, sleep-wise. Ugh.
Thanks.
Linda
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LinnyG, I had been on anastrozole for 2-1/2 years when I had my cataracts done They told me I had dry eye at one of my first appointments, told me which moisturizing drops to use. No problem with the surgery at all. However, I suspect my dry eye was due more to Benadryl usage than anastrozole. Whatever, it made no difference for me.
HUGS!
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I've been on Anastrozole for about 20 months and just had cataract surgery - both eyes - in October. I had no problem at all.
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Cali58, Yes, Arimidex certainly can cause joint pain in elbows, hips and almost any other joint you care to mention. It also causes bone pain, distinct from joint pain.
I soldiered on through 5 years on Arimidex, having limited mobility as a result. The bone pain, for me was taken care of by loratadine (Claritin) - not the one with the decongestant. There is no logical reason for it to work, but work it did. My allergist assured me that it was the one antihistamine that was safe to take on a long term basis and my MO had no objections to it.
It did not help with the joint pain, though. Taking Vitamin D, Magnesium and Boswellia helped some. Acupuncture did too. I know some have had help from Tumeric. Topical Voltaren gave some relief too. I can't take NSAID's due to hypertension.
I've been off of Arimidex for two years now. Although many of my many side effects have resolved, the joint pain has not. I've recently been checked for an autoimmune disorder and thankfully that was negative. I'm now pursuing relief for osteoarthritis. I'll be seeing an orthopaedic surgeon soon for a consult. My left knee, in particular, has severe arthritis and I suspect a knee replacement is in my not too distant future.
I hope this eases your anxiety somewhat about mets. I know you'll stew until the bone scan is done but remember that joint pain is by far the most common side effect of the AI's and is the most likely explanation for your pain. I don't know how your MO could possibly tell you that elbows and hips are exempted from the arthralgia AI's cause but at least he's following up on your complaints.
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I’d been on the pill 4 years or so when my right foot started to hurt. Felt like the bones would shatter when I stood up. My pcp poked on it, said it was OA. Kept getting worse. I was using a walker, and was considering getting a shower seat. Thought I was headed for a wheelchair it hurt so much. Podiatrist was stumped. He told me what it wasn’t, but couldn’t say what it was.
Stopped the Arimidex. In a week, no more pain. Nothing.
I’m going to say the pill could cause such pain anywhere in the body. I’m not a doc, but that’s my story.
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I stopped the Arimidex after 2 years, I could not take it any more! I felt like I was 90, hip pain, thigh …let's just say everywhere! I have been off of it for 2 months, I feel like my old self! I will just exercise more, eat right and feel good about my decision. I had a 7mm pure mucinous cancer, grade 1, stage 1, Her2 neg, 95% + Er and Pr. My tests are all negative so far, since 9/17…….one day at a time!
Susan
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Thank you for the reassurance, Spookiesmom and thecargirl! I don’t know why my MO likes to deny all the side effects of Arimidex. According to him, it only causes back pain and finger joint pain. I am high risk for recurrence and I understand it. I don’t need him to deny that Arimidex is giving me several side effects. I wish he would acknowledge them instead. The only reason why I don’t change MO is because he is supposed to be one of the best MO’s in the West. He sure lacks bedside manners! I am glad you both feel much better after stopping Arimidex. I am taking 1500 mg of Glucosamine Sulfate in the morning and 800 mg of chondrointin sulfate in the evenings, per my rheumatologist. Rheumatologist said that taking them separately works better. In case that someone is interested in trying them, they are manufactured by Theralogix. I have a special code to get them cheaper. PM me if anyone is interested.
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Hi to everyone. New here. I am supposed to start taking Arimidex in a few week. Trying to make the decision as to if I am going to take it or not. Some of these comments make me feel better about taking it and some of these don’t. The side effects scare the heck out of me. Not sure if I am mentally and physically ready for this. Is giving up some quality of life worth it when it does not guarantee that the cancer won’t come back? I know I alone have to make this decision I just can’t decide. Just mentally and physically tired. Just done with it all right now. Don’t want to make the wrong decision. Thank you all for posting your honest opinions
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LinnyG- I had dry eye too, eye Dr had me use Refresh eye drops. Within a week to 10 days it went away. Based on what other ladies have said, you'll be ok for cataract surgery.
8929- only you can decide. I started on 3/1/18, every other day for 6 weeks, then daily. It's frustrating, the SEs come & go and change along the way. Right now both of my thumbs are killing me - go figure, right? But for me it's an insurance pill, trying to insure BC stays away.
I'm researching taking CBD oil for pain. I don't like the idea of living on ibuprofen and taking it daily.
As a side note I'm still taking TEVA brand Anestrozole. The Accord brand made my whole hands ache - caught myself rubbing sore hands all the time. If my thumbs don't start feeling better I'll trade this for sore hands. LOL This too shall pass.
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8929, I so understand. I really wish they would evaluate the cost benefits for each individual situation cause it varies. I would like to know this upfront. I thought I was doing ok on anastrozole, but it really affected one of my joints so I was switched to exemestane. I too am hoping to lessen my risk as I have had a recurrence, but the MO said it only made a 2% difference for me. A lot to think about. Hope you make the best decision for you.
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CindyNY
Where did you find TEVA anastrozole? CVS did discontinue by me. I’m noticing the fillers in TEVA and brand Arimidex are pretty much identical. Maybe why side effects for some are lessened. Who knows, right? 😀
Cali58- Glucosamine sulfate has helped my joint/bone aches tremendously on Arimidex. I can only take non-shell fish version. I’m assuming the brand you are taking contains shellfish right? I’ve had plenty of elbow pain on Arimidex, just as an added note to all others above.
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CindyNY. Just wanted to say "Hello!" I also live in the Albany area. Ive been trying to get my husband to think about going south for winters!. I really can't take the frigid Cold anymore! With regards to the AI, I just started last week and so far no SEs ( or none that I can differentiate from normal aging!)Was glad to see that Walgreens and CVS stock the TEVA brand, should I need it. This community has been so informative and has given me far more info than my MO.
Sharon
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