For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Michelle...I have decided not to take an aromatase inhibitor or Tamoxifen for many reasons. However I researched both extensively before making my decision so I am aware of the possible SEs. Feel free to PM me if you want to talk more about it.
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Hi ladies:
I have been on Arimidex for about a month now. I am starting to notice a few things and wanted to run it by you guys.
1. I take the Arimidex just before bed. I find I wake up at 3 AM and no more sleep. At first, Arimidex made me drowsy.
2. My knees hurt when I go for a walk.
3. Shaking muscles in the morning.
4. Vaginal dryness - quite sore.
So, I know that 3 out of 4 of these SE are from Arimidex. (Insomnia, vaginal dryness and sore knees). What about the shaking muscles. Has anyone experienced that?
And do ya think these things will get worse? Its only been a month.
wallan.
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try taking it in the morning for sleep issue. Don't know about the shakes, magnesium deficit? Try a handful of almonds.
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- I had sleep issues. Didn't matter what time of the day I took it I average 2 to 3 hours of sleep. I got a shaking sensation after about 15 months on Arimidex. Felt like my whole inside shook. MO had me stop to see if the feeling went away. Sleep returned and shaking stopped. Start Arimidex again and symptoms came right back.
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Hello - I am so grateful for this forum. I started Arimidex on April 20, 2017 and have only been on it for a short time. I was taking the pill at 5 pm because that was when I picked up the script. From what I've been reading here, I might want to start earlier in the day to avoid sleepless nights. My only fear is that I am already taking other meds (heart meds, thyroid replacement, a blood thinner and metformin. I take those together in the am and the AI in the pm.
...and the idea of having that shaking thing inside really kind of freaks me out. I have had a bit of shaking already after only 46 pills. Of course I am having hot flashes and night sweats, which I was aware would probably happen, but this is more system wide, and one of my friends told me to get checked out for MS which has high incident rates here in Western New York. I feel the shaking in my legs and arms and hands. I will be going back to the Oncologist this week.
*This was my first post and I have edited it twice already. My ONCO TYPE DX score is 33 - now I realize that is very high.
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Buffalogal - I take my Arimidex in the morning. The pharmacist told me not to take it with my thyroid medicine, levothyroxin, which I take at night.
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Thank you, Butterfly12... that is a helpful clarification. I have been taking levothyroxin as soon as I wake up, and the AI at 5pm. I will check in with my pharmacist. Sorry about awarkward wording as so many thoughts are flying through my brain. ha, which many other ladies here must experience, too. Right?
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I take Arimidex in the early morning and my Armor Thyroid meds in the afternoon.
Coach Vicky
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I haven't posted for a while, but wanted to touch bases. I don't seem to be having any side effects from the anastrozole excep for occasional stabbing pains in finger and toe joints and rarely elsewhere.
I think they're from the AI because they only started happening after I started the pill. But they are short-lived so I'll continue to take the pills.
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I started taking my AI at night because the handful of pills I take morning and bedtime was smaller then. MO didn't say anything about interaction with other stuff although I do take medication for thyroid and high blood pressure (in the morning). MO only said to be consistent about when I took it. I wake up with a headache and some joint pain but it goes away fairly quickly after tylenol and claratin. I don't think I'd want to go to bed with those aches and pains. Only one night of insomnia with the night pill. Has anyone read anything about time of ingestion and SE's?
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Butterfly...Just want to add that most people take thyroid medication in the morning. The most important factor however is to take it on an empty stomach. Your pharmacist is the best person to talk to about it. Good luck.
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Hello Ladies!
First time reading this thread...I was taking letrozole (only 2 weeks), but having issues sleeping, just like you Wallan, I wake up after 5 hours of sleep, no matter when I go to bed, and can't go back to sleep. I'm horribly exhausted, emotional, forgetful, ETC.I tried switching to taking it in the morning and no difference. I was told to go off of it for 2 weeks. So far, no change to the sleep pattern unfortunately. But IMMEDIATELY, the pain I was experiencing in both hips went away.
I actually made the call to the MO to see if I could take Luna. It's a natural sleep inducer, with chamomile, valerian, melatonin and a few other things. Those things have never worked for me when I took them individually, but right now I'm ready to try ANYTHING to get at least 6-7 hours of sleep. The MO was out of the office for the week, so they were going to ask him and when they call back after the 2 weeks, will let me know. Has anyone else taken anything natural to help with sleep?
So, the reason I came here was to see if the SEs were any different for Arimidex. I see a lot of the same issues. I don't know if I'll be improving anything if I ask for a switch. However, everyone reacts differently, so it may be worth a try. Even if I have to cycle through all of them!
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Nancy--I'm on Arimidex. Unfortunately I'm experiencing the same thing that you are on the Letrozole. I just don't sleep well. I even started taking it in the morning and although it's helped some I still am awake until all hours of the night or I fall asleep and am back awake in a couple hours. I do take the non habit forming sleep aid (same ingredient as Benadryl) if I've gone a couple nights with little sleep but sometimes that doesn't even help. I called my MO about this and was basically told it was just something I have to deal with. Other than that I have had no other side effects of the Arimidex though.
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nancy618........I would kill for 5 hrs of sleep
from what I've read on here most would say the same. doesn't lessen your problems at all however. there are so many SE's and problems that stem from these medications. but it seems as though there really isn't another defense for hormone positive pathologies.0 -
Oh seq24 and bjb01, that is NOT what I wanted to hear!!! I've had sleep issues for years, since menopause, and have tried just about everything there is to try. Amitriptylline worked for years until it stopped. Instead of asking my PCP if I could try a higher dosage, I asked for something else. He recommended hydroxizine, which is actually an antihistamine, but my son got it for his sleep issues and it worked for him, and my PCP said its not approved for sleep issues yet, but gave it to me anyway. Worked like a charm until I started on the AI. It's frustrating because I feel horrible ALL the time. I don't think we should just have to "live with it"!
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i totally understand where you;re coming from nancy. each and every medication produced has a positive AND a negative effect. it's all about balance. i take a clonidine at bedtime to help with the hot flashes, but sleep is just not there for whatever reason. could I ask for something to help? sure. but anything that's prescribed comes again with another negative somewhere somehow. i choose not to add meds mostly because i have enough issues
i wish as well that we didn't have to " live with it what other choice is there? it's personal for sure. i hate the swollen painful joints....lack of sleep...planning what i wear based on when the hot flashes will be at their worst...thinning hair....a contracted breast implant that is 2 inches higher than the other....and on and on. BUT what i hate most is the threat of a return of my cancer. so i balance what i can and take my femara. and i fight through it. 0 -
I've only been doing this for about 6 weeks, but I am sleeping (one night exception). Joints, especially knees, have been painful but can be managed with tylanol (where is the spell check when I need it). Until recently I woke up with a headache but that too went away fairly quickly after pills.
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When I called my MO a couple weeks ago about the sleep issues she told me to start taking the Ativan that I had left over from my antinausea meds from chemo. That it would definitely help me sleep. I politely said thanks but no thanks to that. I took only one during chemo and it made me feel worse than I already did, and I definitely don't want to add even MORE pills to what I already have to take now. Then she said she was glad I decided against it because it was highly addictive. Go figure.......
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Hi everyone...I'm so sorry you are all having so much trouble sleeping from aromatase inhibitors. I'm also sorry that most MOs just blow you off when addressing it. Having to take another drug that is known to be very addictive seems counter productive. I also wonder how much harm is caused by the lack of sleep? I think we are beginning to learn just how important sleep really is. It affects our immune systems drastically which can't be good for recurrence rates. Hopefully you can find a solution to this because not sleeping for 5 or more years is not acceptable. We need to speak up for better treatment options. Good luck to all navigating this difficult disease.
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I agree that not sleeping isn't good, and it shouldn't be blown off. I have read SO many articles lately about the importance of sleep, especially for our immune systems and in turn in fighting off cancer. I can't help but find a connection to the time I started having sleep issues again, my sleep going from 7 hours a night to 5-6 and the time my breast cancer probably began.
On another note, I used the full strength of my hydroxizine last night and I woke up a few times, but was able to go back to sleep and got about 6 hours, which is an improvement. However, my brain felt a bit foggy and I'm really fatigued, but that may now be due to radiation...had my 10th of 20 treatments today.
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Hi everyone😊...last time I posted on this forum was back in March...I thought I would be going on hormone therapy str8 after surgery...but nope was informed by RO that he recommends radiation...so here we go with another tryingtokillme treatment for the whole month of May.....Starting tmrw I am finally going to start Arimdex with once a month Zoladex injection...I am crossing my fingers...that everything goes well with these two meds...dont know how much more I can take...🤔
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Nayda--good luck!!! You will do great as usual!! I am taking anastrazole too. I started on March 25. My biggest complaint, which is fairly recent is insomnia. I have no other side effects from it so far. I started out taking it at dinner time in the evening. I thought that might be contributing to insomnia. I started taking it in the morning and there really hasn't been any change. But if that's all I have to complain about with this drug I'll take it. I take a sleep aid a couple times a week to get a good night in here and there and so far I am fine. Please post how you're doing. We've been through every step of this process together my friend!!
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Hi Seq!!
I am so happy that...that is the only SE that your having with this med...b/c yes we both have been through a whole lot during this process....hearing that you only have insomnia...makes me feel better...I started today on the Zoladex injection and the Arimidex pill...I took the Arimidex about 11ish this morning and had my first injection this evening at 5pm...that needle on that Zoladex is so large omg...I told the nurse that i am just gonna close my eyes..b/c if I don't then I won't go through with it..the nurses were very nice..one of them held my hand and the other popped it to me..lol...but surprisingly it happened so fast that I barely felt it...and I am so happy about that...b/c I have to get the Zoladex once a month for 5 years...so far the only SE I am seeing...and I think its from both meds...is that I am hot flashing again...sweating...lol...but that's it so far....so I am really hoping I can tolerate both meds for 5 years...I also take a vitamin...with the Arimidex...it's Calcium/Vit D for my bones...I sure don't want osteoporosis...I am still recovering from Rads...but at the same time happy to be at the end of this....I am so happy your at the end too Seq!!!
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So I finished my first packet of anastrazole and lo and behold, when I picked up my second today, the pharmacy had changed to a different manufacturer. I had finally adjusted from the early side effects I had after a couple of weeks and now I'm afraid they're going to return again with this change
And of course, I have to start the new package tomorrow, on a work day. I can't remember what the first manufacturer was, but this new one is Sandoz. Anyone with any experience specific to this?
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I'm not familiar with that mfg. When you are due for next refill, stop by pharmacy IN PERSON, a few days before you run out,ask to speak to pharmacist, tell her/him which brand you want. If they can't get it, shop around. That's how I finally got Teva from Walgreen. A bit of a hassle but worth it.
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CVS also has Teva.
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So this is very interesting for someone who will be on Arimidex (anastrozole). There are different manufacturers of the generic? And they aren't the same? I get my prescription meds through a mail order pharmacy so I don't know that I'll have a choice of manufacturer.
MJ
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Chiming in here. I read a lot of posts on this site and others about the different generic brands of Arimidex. I'll summarize briefly. Some women wrote that when they took brand name Arimidex they have no or few side effects. Many had to switch to generic brands from other manufacturers when Astra Zeneca lost their exclusive patent, . Many started experiencing SEs from these generic forms. The main ingredient anastrozole is the same but these manufacturers use different fillers which may account for these SEs. It seems that for several women the generic from the manufacturer Teva seems to cause less SEs than the manufacturer Accord. I pay out of pocket for name brand Arimidex from Astra Zeneca which I order directly from Eagle Pharnacy. So far I have no side effects. Now I have to say this is anecdotal evidence only. Some MOs dismiss this and some don't. I honestly don't know if my taking brand name would be the same results if I took a generic. You can read through some threads and posts on this website to help you make an informed decision that is right for you. Love and blessings.
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I take Teva's anastrozole. I read a lot on this thread before I started it nearly 3 years ago and the women were saying that most had fewer problems on Teva than some of the others. The fillers seem to be the culprit. I haven't used the brand name so can't speak to that. I get my anastrozole at Walgreens and have it noted that I will accept only Teva, no other generic. It isn't a problem.
HUGS!
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I also take the Teva generic, from Walgreens. Read a lot on this thread about fewer SEs with Teva and the culprit does seem to be fillers. I love dealing with Walgreens pharmacy - much more personalized and friendly than my "regular" pharmacy, which is in a busy Kroger store.
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