For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Anx789, I have had exactly the same issue! At one point, my TSH was almost zero, but still a normal T4. My doctor had to keep lowering my thyroid dose to get the TSH higher, but my T4 was always normal. I've never considered that the biotin could be the problem. Weird.
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Natemax,
You are incredibly fortunate. I've just failed exemestane after failing anastrozole. I was crippled by both.
I'm on a 3 month drug holiday until I see my onc in early March. Frankly, I have no idea what she will suggest next since both drugs affected me equally. For now, I'm enjoying getting up from sitting, getting in and out of a car, turning over in bed - all without thinking. Not thinking about pain 24 hours/day is freeing.
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So I am basically at a loss of what to do next. I have been an Anastrozole since February but only at half-dose. Even on that reduced dosage, I had all sorts of problems and was ready to quit my job due to major insomnia, severe IBS, very low mood, lack of concentration etc. So my oncologist recommended a 4 week holiday from the med. That 4 weeks was bliss. I felt brighter, I had energy, my family and friends said I was my old self again and I felt like I could do my job at work. One thing I noticed during this time was the swelling I had had since surgery and had multiple OT treatments for what was believed to be lymphedema and cording went away. I attributed this to the LE treatments and that it had finally resolved. Then I started on brand name Arimidex and the swelling came right back. I had not even attributed it to the drug but have since read that it is indeed a potential side effect. ANYWAY, the very worst part is I got my bone density scan this week and I have lost 10% of bone in my spine in ONE YEAR! I already had low bone density but had previously maintained with estrogen. My MO knew this but said it takes a long time for AI to adversely affect the bone and we would address treatment in 2021. My endocrinologist said that he has seen it happen very quickly and I should have been on Reclast from the beginning. I do not handle ANY med well and am terrified of trying Reclast/ Prolia etc. but my scans are very bad at this point and I don't know what to do. Does anyone have any positive reports on Reclast? I am not even sure whether to continue AI at this point either...UGH.
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Polkadot1-I worked out like a gym rat, 5x a week hard. Within a year on Anastrozole I had osteopenia. Eat right, work out, take calcium, etc..it didn't help.Endocrinologist had me start Fosamax generic, one 70 mg pill once a week, after 1 year my osteopenia is gone. I was going to get Reclast infusion but decided to stay on the generic once weekly pill. My reasoning was I tolerated it well. My MO takes Reclast and recommends it, I'm just staying with what I know. Best of luck to you.
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CindyNY- thank you for sharing your experience. That is awesome you were able to reverse your bone loss and it is good to hear your MO actually takes Reclast. I am just afraid of an infusion since once it’s in your system, there’s no turning back if you have a bad side effect. I am thinking of trying the oral meds again. I did try them in the past but gave me digestive issues. All these treatment decisions are so hard. I guess I should be thankful we have treatments available.
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Hi. I haven't been on here for a while. I have been on Anastrozole for a little over a year. The SE have been not been too bad. My bone scan has not changed in a year. I have a problem with my middle finger locking up on the right hand. I exercise it regularly. The thumb on the left hand has started locking up as well. Any suggestions?
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Hi petite1,
My oncologist suggested sleeping in wrist braces as AI's can cause carpal tunnel. I purchased the Mueller green wrist braces, left and right. I sleep with them every night and my finger issues are much improved! The braces are inexpensive and widely available. I purchased them at my supermarket and I see they are widely available online as well. If you try them, I hope you see improvement as well!
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SimoneRC, Thank you. I will check into it. Happy New Year!
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SimoneRC - I will try those wrist bands and see if they help.
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I hope they work for you, petite1 and BlueGirlRedState! They have made a really big difference for me. Much improved.
Happy New Year!
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I am on Arimidex and notice my toe nails are discolored, and some falling out and look really funky growing out. Is the normal
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Hi, I am on Arimidex I believe you call it Al on these messages. So I also have started a bigger dose of Pravastatin 80mg once a day along with Synthroid 112mcg a day and supposed to have Prolia starting in March. I just wonder if I should just do the Fosamax I hate the stuff because of my stomach but almost seems like I have to grin and bear it. The pravastatin can cause muscle loss.
Thank you mg.
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Has anyone had a problem with their toes nails falling out and getting funky with Arimidex
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Yeek! Fortunately, my nails are fine. I hope you get some answers on why your body is doing that, Suzy.
I was having issues with my hair thinning, but I tried Annie's suggestion of biotin shampoo. I've seen much fewer hairs in my comb or falling out in the shower. I haven't noticed my hair thickening up yet, but my scalp gets itchy. I'm hoping that's a sign of follicles waking up and growing hair again.
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thank you Miranda. I am going to try that shampoo. Not sure what is going on with my toe nails
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1/16/21 - Hope I'm posting here ok, been off site for a few years. Prolia question. I am 75 but in good condition. I've had osteo in my hips, normal back for 20 years, taken lots of fosamax, soso. I was on tamoxifen for 5 years. On Dec. 15, 2020 onco doc changed me to anastrozole (armidex), no problems, I walk every day.
In 3 days I'm supposed to start on Prolia, and from all I read it sounds like most people have terrible long term and permanent side effects. I'm going to do more research, but I think I'll tell the doc I'm going to pospone it at least until I can get covid immunization, which may be months.
So, I'm wondering how many people on AI and prolia and how the prolia has affected you, or is it just fine?
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I've only been on anastrozole for one month. The first week I had bloating, started taking it with food in the morning. Then I realized what I ate with it had an effect. Now take it with a little cottage cheese and I'm not having any side effects. I make sure to walk a lot. Keep moving all joints.
Also, I had 5 years of tamoxifen before, so that may make a difference.
If she's able, she needs to "keep moving". I am 75 - perhaps similar age of your mother.
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NM71, I had few injections of Prolia. I wasn't taking either Tamoxifen or Arimidex at the time. It's been a while and I honestly don't remember how injections many I had. The injections were six months apart. My dentist was kind of freaked out because a possible, but not very common, side effect is ONJ (osteonecrosis of the jaw) but I never had any of those issues. Your medical team will probably want you to be very careful about invasive dental work, like extractions.
I'm now on Zometa, which is another bone strengthening drug due to my diagnosis of Stage IV cancer with mets to my bones. I'm also taking Ibrance and Arimidex.
Having not taken the Arimidex and the Prolia at the same time, I can't answer your specific question, but I'm glad to hear you're in good health and walking every day.
Carol
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Hi NM71,
I've been on Anastrozole for 2 years now and I got my 1st Prolia shot on Dec 16th (1 month ago). No reaction, no problems. I'm 60 and take a lot of supplements to counteract the Anastrozole. I never took any other drug for osteopenia before the Prolia.
J ~
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Thank you to both you and Jaybird - good to hear.
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I hope at least some of y'all remember the Leeroy Jenkins video from a dozen years ago. Someone layered the soundtrack on footage of the insurgency. xD
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I just bought a wrist brace. My (R) wrist has been really hurting for a couple of days. Bought the Mueller Wrist Stabilizer at the grocery store today. It was kind of a pain to get on because I have a very contracted pinky on that hand. Fortunately, the brace has holes for thumbs on both sides, so once I get my hand in there far enough, I can slip my pinky out of that hole. I have to scroll back, but I think it was SimoneB who mentioned the braces. Thank you for that, SimoneB. Feels better already. It kept waking me up last night, so I hope this helps.
I think I saw it mentioned that AIs can cause carpal tunnel syndrome. Love the info I can get here!
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NM71-
Not on arimidex but was on exemstane for two years (back to tamoxifen now). I have had 3 prolia shots.After I had the prolia injections I noticed a huge increase in the pre-existing AI induced arm and shoulder pain. To the point where I considered not taking the next shot, although I always ended up doing it anyway. This side effect did go away after a few months, so I figure that the protection against a possible fracture is worth it. Other than that I can say I have had not problems with the prolia.
Good luck with it.
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I have had 2 shots of prolia ... I am not sure if I have a side effect or not... my thigh gets a pain like a tired ache recently and I've never had it before. I am suppose to get my next shot in May/June.
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I decided to quit taking my AI a month ago since its been 5 years out from my cancer diagnoses and the price tripled. In the past month I’ve started gaining weight and feeling moody. I’m suspecting the return of some estrogen. Now I have a returned fear of reoccurrence and I’m wondering if I should just go back on it. Vaginal atrophy is the same and isn't really an issue. I wrote to my original Oncologist to see what he thinks. I moved to a different state and have a new general oncologist who thinks it’s fine to stop. Wondering if my fears are legitimate
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I have been taking Anastozole since September. I was doing okay, aches, pains and stiffness, but manageable. A week ago Sunday I woke up in the middle of the night with the most incredible pain in my left wrist. It got so bad in two days that I couldn’t use that hand at all and I’m left handed. By Thursday I called my MO and she had me stop the Anastrozole. Within two days the pain completely stopped and I almost feel normal. Has anyone else experienced this? I am afraid to go back on it but based upon what I’ve been reading, the other drugs almost sound worse. I’m also wondering if anyone had had any luck with a major diet change, like going completely plant based. Has that helped anyone?
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Flowerlover, I had some pretty severe pain in my right wrist a few weeks ago. I'm left handed. I ended up getting a splint made my Mueller. It's called a wrist stabilizer. I wore it for a couple of days and the pain subsided. The splint is kind of a pain to wear, especially if I'm working on the computer or doing dishes, etc., but it was worth it. I put a plastic bag over it while I was washing dishes so that it didn't get wet. It really seemed to do the trick for me. I read somewhere about Arimidex causing carpal tunnel syndrome. I didn't remember to tell my MO at my last appointment. I've not tried a major diet change.
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I had severe thumb pain, that would go up my wrist. I wore braces on both hands to workout; sometimes to sleep - as it would painfully wake me up at night. Ended up having dequervains surgery. They release the sheath surrounding the tendons, pain gone, left with a zigzag scar on the side of my wrist.
No idea if Anastrozole caused it or brought it to the forefront of pain. But I've had no carpal tunnel. Best of luck with your hand.
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Been on Examestane for 4 years. Did Anastrozole the first year and had bad hand, knee and hip joint pain. Switched and it's been much better although I still ache if I overuse my hands. Been vegan/whole-food-plant-based exclusively for 5 years. I lost 45 lbs which I think helped lessen all my aches and pains. Definitely worth a try.
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flower, I had terrible pains at night. Mainly thumb, fingers. Also generalized joint pain at its worst to where I could not go down my stairs without one hand on rail and other sliding down the wall. For me the 7th month was by far the worst. It gradually got better and very tolerable now. I fly down the stairs without thinking. Just generalized aches that are tolerable
Always exercised regularly, primarily plant based diet. Maybe get an appt with dietician to discuss. Glucosamine/chondroitin may be worth a try. These meds are quite an adjustment. Hang.in there
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