For Arimidex (Anastrozole) users, new, past, and ongoing
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Krose53, I was wondering that very same thing. I have only been in it for 5 weeks, and so far it is manageable. But I don’t want to get too nonchalant about it if SE can change, get worse etc...
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Hi Krose53,
Just to chime in, I experienced side effects after only three days on Tamoxifen, but once I was on Arimidex six months later, it took about 8 months before I experienced significant SE’son Arimidex.
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Krose - I'm really confused by how many dr's discount side effects as "can't be from the AI, must be something else," when there are so many instances that say differently. I've struggled with tingling/heat/pain in my feet various times over the years, and it has popped up again now that I'm taking Anastrozole. I do read that the AI's inhibit our magnesium absorption, and magnesium helps our bodies absorb b12 - which we need for nerve health. I mentioned in another post that lower b12 always causes neuropathy type symptoms for me. I don't remember what the "recommended level" is, but my neuro says to stay at 6000 or above - and sure enough, when I do, my feet and hands feels great. My foot dr agrees, and he is the one who started me on my supplements. He said that the majority of his patients with this complaint end of up not needing to do anything else. I would try starting the mag/b12 together, and I hope you will feel better soon.
As far as timing, I developed vasculitis after 9 weeks, and found a study that said 8 weeks was the most common timing for vasculitis on AI's. Now I'm at 11 weeks and have pretty nasty pain in my right hand. I had tingling on my face with Tamoxifen after I was on it for a while. Allergies show themselves right away, side effects can pop up whenever darn they feel like it!
Celia & BlueGirlRed - thanks for the information on glucosamine+. Did you start taking it with your AI at the beginning, and did it prevent the joint pains? How long did it take to have a good effect? I'm just tight when I walk, and have pain in one hand. Hoping I can get this in my system before things ramp up.
happy weekend, all!
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Thanks everyone for the responses. I didn't make sense to me that side effect only developed immediately when starting an AI. I'll try the Mag/B12. I have migraines and have heard magnesium is helpful for that as well.
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Krose53 - SEs, they are different for everyone, and it is frustrating to have them dismissed. They could be caused by other things, but when you can point to something that has changed, even if weeks, months, maybe years ago. I thought the brand name Arimidex would be the end of the joint issues in my hands vs the generics, because for quite a while my hands felt fine. With the generic, SE effects on joints immediate. I am now experiencing overall slight stiffness in both hands, and the middle finger on left often locks up (even when I am not pointing it at anyone). It locks when doing motions like trying to get a lid off, and sometimes I have to unock it using the other hand to unbend it. Not as bad as the generic. I keep telling myself that I will do finger exercises, but I do not. But I'm getting fed up, and will try them. I do not get the numbness/tingling you described. I have been taking magnesium for years, initially for cramping in calf muscles, and it really helped.
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I have been taking Anastrozole for 3 years and 6 weeks ago I fell walking into my garage. I broke my ankle on both sides and dislocated it. I don’t know if it was an accident or because of weak bones. Will have a scan in a few months to compare to the one from 2 years ago. I will most likely ask for a bone med or ask to switch to Tamoxifen
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Good morning: last night was the hardest night yet to get to sleep. My feet are so achey and I am constantly moving them around. It usually lasts about 1.5-2 hours. Is that neuropathy? It is a little different than the restless leg syndrome in that there is more pain.
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Kkukowski--I've lost track of who is taking which supplements but magnesium seems to help with a lot. I always tended toward leg cramps at night but they've pretty much disappeared. There are various forms of magnesium supplements and after a little research I landed on magnesium glycinate. I haven't had any tummy problems, which is an SE of a lot of the other types.
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Krma- so sorry to hear about your fall, it all sounds painful. I've been put on Fosamax generic, I take it once a week. Not big on adding more meds to ward off the SE of other med (Anastrozole), but had to do something - osteopenia showed up in my hip since starting the AI. Best of luck in healing quickly.
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Hi, Ladies. I haven't been on for a while and thought I would stop in. I have been on Arimidex for about 5 months and some joint pain when I first started. Exercise relieved it. I have hot flashes once in a while, but not too bad. So, pretty good so far. Yesterday, I had a pain in my R thigh. It felt like I had bumped it hard, but nothing there - no discoloration or swelling. Anyone have a pain like that? It is not a cramp.
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krose53 - Arimidex (started in August 2017) made me nauseous when I started taking it. It helped taking it before bedtime (I was taking it with dinner). After almost 2 years on arimidex, I started taking it with dinner again and had no nausea. My osteoporosis got worse and I will start using Prolia very soon. I also developed trigger finger (middle finger locks). It was extremely painful every morning when I woke up, but got better with exercise. It still locks, but it isn’t painful. If that wasn’t enough, last year I developed psoriasis in different areas of my body. I have also had seborrehic dermatitis in the scalp since I started taking arimidex. It’s very itchy all the time.
Reader- thank you for your encouraging words. I hope all my side effects go away in 2 years.
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Has anyone else had seborrehic dermatitis and/or psoriasis while taking Arimidex?
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reader, thank you for the update.
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Cali58 - what kinds of exercises do you do for the trigger finger? I thought brand name Arimidex would be kinder than the generic anastrozole. Initially it was, no joint stiffness. In 2017 I quit anastrozole (generic) and switched to tamxifen after a few months because of stiffness in both hands and trigger finger in both Stiffness and trigger went away. In Sept 2019, BC for the 3rd time, this time on the right. Oncologist put me on Ibrance and Arimidex (opted to buy brand name directly rather than generic through insurance). For several months, no SEs from brand name. But recently stiffness, and a pronounced trigger finger on left. Sometimes I have to unbend the finger with the other hand. Looking for relief.
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bluegirl — I stretch mi fingers and hold them stretched for about 5 seconds, release and repeat as many times as I want. I do it while driving, eating, watching TV, etc. I stop doing it because my trigger finger isn’t painful any longer. I also started taking name brand Arimidex and this may have helped too.
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Thank Cali58 - that is doable anywhere
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krose53, Petite1, been on arimidex about 2 years. I did 4 rounds of CT and also had the neuropathy in hands/feet. My doc said it was more likely a SE of chemo and that it would eventually go way. She was right...gone! I did have very annoying cramps in feet/hands that messed with sleep. I now take magnesium and almost never have a problem now. Still get the weird pains here and there but they pass. More bizarre that anything. Oh, and my hair is as thick as before! Good luck, hang tough🙏
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High cholesterol - what?? I've never had high cholesterol, 3 months in on Anastrozole (actually, still on break at the moment due to the vasculitis), and I just tested at 267. My primary wants to put me on medication. Very unversed in cholesterol management. Anyone experiencing this? Are you controlling it without medication? The idea of osteoporosis AND high cholesterol is really discouraging me.
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One thing I was told about melatonin by my naturalist doctor....too high of a dose can also disrupt sleep. I actually took a 0.3mg which is the lowest dose they make and very hard to find. I found within a week of taking that dose I slept very well. I continued on it for a couple of months till my sleep was regulated then weaned off. If I develop insomnia, I just restart it for a couple of weeks. A few times I took higher doses and it gave me really vivid dreams and left me exhausted when I woke up. So for some, less is more!
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Count it ...
Fellow Arizonan,
I've been taking Arimidex for three years. My cholesterol levels were 231 and 241 the past two years. My MD wanted to put me on a statin. I said I wanted to try diet first, just didn’t want to take another med that can cause muscle aches.So I switched to 2% milk, watched my butter, cheese and egg intake. Just had it tested and I'm down to 213. Arimidex has been linked to high cholesterol levels. I'm also on Prolia injections for osteoporosis another “joyful" SE from Arimidex. I'm seeing some improvement after three years but it's been a slow process. It's been a matter of weighing risks vs benefits. Stay safe in AZ, as I know your COVID numbers are rising
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I started a thread titled, Doing Well on Aromotase Inhibitors when I began taking Arimidex in 2017. You may want to check it out. I've been taking name brand Arimidex from the beginning since I had read from various posts that the generic brands caused SEs from the various fillers. I don't know if this is scientifically proven but there was enough anecdotal evidence from our “sisters" that convinced me to pay out of pocket. I'm fortunate that my SEs are not debilitating. It's difficult to know if my aches and pains are from the meds or old age. Exercise helps and some days are better than others. Be well and safe. Blessings
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Butterfly - I have had a high cholesterol level for many years prior to BC. I have been on Atorvastatin for several years now and my level is now 142. A 100 point drop. I have not had any side effects from it that I'm aware of. I'm having more SE from exemestane than Atorvastatin. I really have not adjusted much in my diet either. I have a pretty normal diet - not heavy on any part. A lower cholesterol level is more beneficial regardless of how you get there but trying to do it by diet can not only take a long time but won't give you the benefits of the medication. Just my 2 cents.
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Butterfly1234 - I've been taking brand name Arimidex for 9 months now. 2 years ago I started a generic anastrozole and switched to Tamoxifen because of SEs, joint stiffness immediately. Initially no SEs on the brand name. Joint stiffness now, and one finger on left hand often locks when curled. Sometimes I have to free it with the other hand. Hair thinning. SEs much less on brand name, but there. One person posted that they are looking for something "natural" to supress estrogen. I do not know if they found anything or if it would have fewer SEs.
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Hi BlueGirlRedState,
Thanks for your input and information. I've got the same joint stiffness in my left hand - ring finger and a bump on my pinky. Right thumb too. Ring finger does get stiff. Probably a double whammy from Arimidex and age. I'm gonna try to get my cholesterol to below 200. I'm tired of taking meds for the SEs from meds. A never ending cycle. Two more years and I'm hoping to stop the Arimidex. I hope the name brand works well for you, all things considering I've been pretty lucky with the SEs. Be well
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I am going on my 8th year of Anastrozole. Teva brand. I'm making it. Aches, pains, trigger fingers, nut Ill take it. I have been offered to try another AI, but feel that its better the devil I know, since I've made it this far!
I am on a Statin for cholesterol. Atorvastatin. I am making it, I have diabetes and it is helping to keeping my cholesterol numbers below 100. Last check was at 80, one before 102. BTW, my A1C was 6.5. Been on that 10 years. Hang in there ladies.
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Butterfly - I am tempted to take your route. I've never been pre-diabetic, but suddenly am. I am reading that the risk of diabetes for those on statins are over-reported - except for those that were already pre-diabetic. Now I fear taking statins to lower my cholesterol - and pushing myself over the edge into full diabetes. I would prefer managing my new cholesterol level with diet and exercise... assuming I can.
Digesting an article on the statistical benefits of extending hormone therapy to 10 years. Interested because there are times I want to just say 6 years in, and done. Interesting. https://bmccancer.biomedcentral.com/articles/10.1186/s12885-018-4878-4
I found a risk predictor for heart attack/stroke. Even with my high cholesterol level, I scored very low for risk, probably because of my low blood pressure. What do you all think of the accuracy of this?
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Moonflower - 8 years in. Congratulations! I am very happy for you. I get "the devil I know." Sometimes predictability is priceless.
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I'm curious if anyone has this side effect from anastrozole, or if it's caused by something else. I get this pain in what feels like my skin. Kind of like an extreme hypersensitivity, don't touch me kind of thing. It's very hard to describe, but I feel like a walking raw nerve. I get it a lot in my sides towards the back (especially my right), and at first I thought I had shingles or something. I also get this sensation in my arms (again esp. my right) and sometimes other places on my body. Right now I'm feeling it on my neck and shoulder as well.
This sensation can get very extreme during a hot flash, which unfortunately happens often, and sometimes makes me want to jump out of my skin. Add in the racing heart and it's like a full blown panic attack. I just have to close my eyes and breathe through it.
I had posted before that my MO wants me to try to switch to Letrozole because of my severe hot flashes, but I am really afraid of gaining weight on the Letrozole. I actually used that phrase "the devil you know" when talking to him about it. As bad as this is, keeping my weight down is the only thing keeping my blood pressure down to manageable levels and my glucose down (I'm hovering in that "pre-diabetes" zone). My son was put on Letrozole (off label use) because of low testosterone in high school. He took a pill once every few days and gained 30 pounds in one month. Had to take him off if it after that one month. He had stretch marks all over his body from the rapid weight gain. That's where my fear of it comes from, though my MO said the effects are much different in men. Still, I don't trust it. My son has been trying to lose that 30 pounds for years.
I also have the pain and stiffness in my hands, and sometimes burning in my fingertips, which I'm guessing is neuropathy from the radiation. I've only been on anastrozole for a year and am not looking forward to dealing with this for 4+ more.
Sorry, my question has turned into a rant.... Really just wanted to see if anyone else has similar side effects so that I know I'm not crazy!
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Whatjusthappened wrote: I'm curious if anyone has this side effect from anastrozole, or if it's caused by something else. I get this pain in what feels like my skin. Kind of like an extreme hypersensitivity, don't touch me kind of thing. It's very hard to describe, but I feel like a walking raw nerve. I get it a lot in my sides towards the back (especially my right), and at first I thought I had shingles or something. I also get this sensation in my arms (again esp. my right) and sometimes other places on my body. Right now I'm feeling it on my neck and shoulder as well.
I don't know if this is exactly what you're talking about-- and it IS very hard to describe. I get something like this, but only on my legs from the knees down. I've been on Arimidex for five years (in fact, I just stopped), and I don't remember if this was a whole-body experience in the beginning. I did get hot flashes all over my body CONSTANTLY in the first couple of years.
Now this particular thing happens most often just to my lower legs when I first get into bed (or if I get BACK in bed after getting up to pee during the night). It's an extremely unpleasant sensation. Like my skin is on fire. Almost like an adrenaline rush such as you might get if someone came up behind you and shouted-- like a flash of heat runs though your skin. For me, like I said, it's just on my lower legs (now). It lasts for about two minutes. I've always attributed it to Arimidex-- I certainly don't remember anything like this from before the BC Journey. I'm hoping it eventually goes away, but I've only been off the drug for less than a month.
One thing that helps is to apply an icy-hot Ben Gay-type muscle cream on my lower legs when it happens. Sometimes I've just gotten into bed and I'm too lazy to even sit up and do this. But I keep the lotion beside my bed and if I apply it liberally to my legs while this "hot flash" thing is going on, it seems to blot it out. I guess the icy-hot reaction of my skin overrides the yukky feeling, or distracts me, or tones it down or something. Just for the heck of it, you might get one of those muscle creams and try applying it to your side when you get this sensation and see if it helps you get past it for the moment. I haven't seen this sensation described anywhere, and when I try to describe it to my MO or her nurse, I just get a blank look. (As I do when I cite just about anything I believe is a side effect.)
Let me know if this makes any sense to you.
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whatjusthappened -
Good morning! I had peripheral neuropathy during and following chemo. But nothing like this painful thing you're describing, and not with anastrozole. What a hard thing to deal with every day. and night! It does sound like a nerve damage issue. maybe what you're experiencing is neuropathy that affects your central nervous system, as well as your peripheral nerves? Peripheral neuropathy is much more common, I only even heard of the other by accident. I attached an article below that refers to it, I'm sure there are better ones online.
Our MO's are cancer experts, and I'm finding better luck having them treat my cancer, and pulling in other specialty dr's for my worst side effects. Maybe you want to search for a good neurologist in your area? or have you already been to one? They bring a lot of experience to the table. My MO and PCP said more B12 wouldn't help me b/c I was already at the optimal range of 1300. My neuro said her patients see relief when they stay at least at 6000. Sure enough, if I keep my level up that high, my hands and feet are very happy. Your situation seems extreme, and I hope you find someone able to help you get relief!
Sometimes a medication break has also helped me when a side effect just gets out of control. I'm on one now.
https://www.neuromodulation.com/fact_sheet_painful_peripheral_neuropathy
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