For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Thanks lago & Jo & Redheaded1, I am giving melatonin another try, but I will try the sublingal one if this one doesn't work. I have an onco appt on the 18th & I am going to ask about a sleeping pill.
Jennwith4kids, I have no problems with joint pain on anastrozole, it was all the other AI's that were troublesome. I don have hot flashes which I take gabapentin at night to control them. GG
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GG, I had sleep issues ever since my DX, and with both Arimidex and Aromasin. Melatonin did not work for me. At first Neurotin (gabapentin) worked, from 300 to 900 mg. Then both my MO and PCP had me try other sleep aids. I cannot take Ambien and its ilk. Finally we found the one that works beautifully for me: Clonipin or clonazepam in a low dose. BTW, Ambien worked but the doc wouldn't let me take it regularly because it's addictive. My docs were very understanding about the body's need for restful sleep and worked with me. Hopefully, yours will, too, It may take a few tries to find what works for you. Good luck!
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Wavewhisper, Thanks for letting me know what works for you. I want to have as much information as possible before I see the Dr. I do take 600 mg of gabapentin before bed & last night I also took 6mg of melatonin & I did get a bit of sleep. I don't know why, but I'm scared to start taking a sleeping pill, I guess I'm worried about becoming mentally addicted something. GG
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My SE's at 21 months on Anastrozole:
Trigger thumb both hands within a couple months of starting (resolved on its own within a few months)
Hot flashes (already had them before this drug)
Insomnia (already had before this drug)
Stiff/sore feet (did not have before this drug, it started about a year in, it's worse after being immobile but loosens up after several steps)
Stiff/sore ankles (did not have before this drug, this one started within the past few weeks. Again, worse after being immobile but loosens up with movement)
Focus/memory (not a noticeable problem before this drug. Short term memory and ability to focus have deteriorated. Very frustrating but not debilitating)The two SEs that existed prior to Anastrozole have not gotten any worse (hot flashes and insomnia). Of those two insomnia is by far the worst. I'm sure some is my own problem because I've developed crappy sleep habits. I take 10mg Ambien each night along with 6mg melatonin. Every couple months I take a break from Ambien and switch to an OTC for a week or two instead. Fairly early on I switched taking my anastrazole from bedtime to first thing in the morning and it did seem to help with the insomnia a bit at the time.
The foot/ankle stiffness and soreness, along with the cognitive issues, I'm hoping will resolve in another 3.25 years when I'm done with the drug
. Also hoping the side effect that seldom gets mentioned here clears up at least somewhat then also (vaginal dryness 
).Roll with the flow and see what happens. Many women have few, minor or even no SEs. They're not on this thread. If you do, however, have SEs that become unbearable there are options, so communicate openly and honestly with your MO and PCP.
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BB, here's what my dermatologist has me doing for the thinning hair: a prescription (pill) to increase blood flow, prescription shampoo twice a week, some other prescription lotion to put on my hair overnight twice a week, Biotin spray (also prescription) to put on my hair every morning. Here are the over-the-counter items: cinnamon, Biotin, fish oil, vitamin D, calcium, low-dose aspirin, Z-Bec vitamins, and organix brand thick and full shampoo and conditioner for every day. I also go to his office every three months. At that time I get hair vitamins injected into my scalp. It's not that bad. He uses an air gun thing.
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One year this week for me. Sore fingers and feet especially in morning, but very mild. Hot flashes same or worse than ever. But in general- ive been lucky. Hope not to be saying any different another year from now! If youre starting out- think the best. I think most with bad se are in the minority.
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GG, I can understand your fear of even a mental addiction. Before BC, I was reluctant to take almost any pills. But now I take about 16 a day. My doc was very understanding, as I mentioned, and said sleep was So important for physical and mental well-being that it was worth taking something strong. But she would not let me take Ativan because it is habit-forming. I realize that I'm already physically addicted to caffeine, get migraines if I miss it in the am. So I don't worry about relying on a med. Mine is not primarily a sleep med but it has that effect, just like Gabapentin originally was an anti-seizure or neuropathy med. Anyway, hope something works out for you.
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Missing, I, too, have thinning hair. Does any/all of what you're doing make a difference? My derm just gave me OTC supplements and I'm using Nioxin. No visible effect yet and I'm getting worried. My next step may be Minoxidil. Others who have tried it??? I know lago uses it...
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Wavewhisperer, Thanks! I take the gabapentin for hot flashes & neuropathy in my toes which doesn't bother me in the day but at night it can keep me awake. I know that in some folks gabapentin can make you sleepy but doesn't seem to work for me. I took the melatonin again last night & had a horrible night, so I'm not sure if it's the answer or not. Anyway, I will talk with both onco on 18th & Family Dr on the 19th, I'm sure they will come up with some kind of solution for me.
In the meantime I will just try my best to get some sleep. GG
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Wave - interesting that your PCP wouldn't give you Ativan - both my oncs and PCP in Canada and the U.S. wrote scrip for Ativan and continue to do so - I am not addicted to it - I use it maybe once every two weeks if I am awake in the middle of the night and I always use it on scan and blood testing days to calm my nerves - my drs didn't want me taking Ambien - I tried Gapapentin for neuropathy and it didn't work - it did make me groggy but never let me sleep - go figure - years ago when I travelled to Singapore I took Melatonin to get me through jet lag and had the most horrendous night terrors - not trying that again but know many people who have success with it.
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Melatonin gives me terrible dreams, too. I won't take it. Even though it helps me sleep, I would rather be awake than have those horrible, vivid nightmares. I take my Anastrozole in the morning and I don't usually have trouble sleeping.0 -
Interesting how once again everyone has slightly to wildly different recommendations and scripts from their various doctors for the same problem, huh?
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Sandy, I do have a script for Ativan and my doc ok'ed it for OCCASIONAL use, like before MRI's, etc. The problem was I told her I was using it every night and could not sleep without it. That's when she said I couldn,t use it like that.
You and your doc will come up with something...
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Funny, my doc told me to go ahead and take it at night for sleep....
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hmmm hadnt thought about melatonin giving me weird dreams, thought it was the effexor. Will stop the melatonin and see what changes. I do zzzquil also that helps me fall asleep and sleep. But the weird dreams are not fun.
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I have a SIL who was prescribed Ativan for a sleep aid. She's been on it for years and as far as I know bedtime is the only time she uses it.
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Thank you everyone for your comments. It really helps. I to am starting to feel really depressed. I thought it was just the body aches which are making it harder to exercise. Thus the 25 lb weight gain. Now I'm wondering if it's the Meds itself. When my feet really started to hurt a couple of months ago I thought it was the weight gain but now I think that to was the Anastrazole. Slowly the SE's are making it's self known I guess. Wow when I see that lago used this for three years with SE's it makes me wonder if I just need to suck it up and work through and handle this pain.Now I cant even lift my coffee cup with my right hand. It's that painful and weak. I'm pretty tough and was doing cross fit prior to DX . Now I'm grateful to be able to get out and take a short 30 min walk. That's how much pain I'm in. It does lessen just a bit once moving around but as soon as I sit down and then get up it starts all over again! Also any advice for this unbelievable weight gain? My diet is pretty good. Everything is settling around my middle. I went from a size 6 to a 10 and my body now looks like a circle! I look down and don't recognize my legs anymore. Puffy all the way down to my ankles! I'm 53 and here in Hawaii we are always outdoors, beach etc..now I just feel more compfortable staying home. Sorry to sound like such a bummer but I just cant share with my husband without feeling like I'm feeling sorry for myself. I am a positive person and never ever think of why me or how did this happen to me. I just am thankful for everyday that I'm here. I know in five years this will all be behind me. I just would like a little control over the amount of pain Im in! I could use any positive thoughts. I thank all of you for supporting each other. Positive vibes, prayers are so powefull!!
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gailani - I hear you and agree with so much you wrote... maybe you should ask to go on another med? different meds maybe you'll have no or at least less side effects..
I feel like its a vicious circle - weight gain = feet hurt, joints ache = can't walk as much ... makes exercise so hard.. can't lose weight.
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Been away for awhile, lots of doctor's appointments. I see my dermatologist tomorrow, will ask him about the hair issues. Only on Anastrazole for a few weeks, so not much going on yet, hope it stays that way. I have some scar tissue on my heart from first radiation 13 years ago, so kind of concerned about more scaring from the recent radiation and the heart and stroke SE's from this drug. Saw my cardiologist today and he said, in his 14 years he has only seen these SE's twice, so I feel better about that. Hope everyone has a pain free evening.
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gailani, I think sometimes it's okay to feel sorry for ourselves as long as we don't dwel on it. We have ALL been through hell...I feel for you, let hubby know how you are feeling, he might have the right words or he might do the right thing to make you a wee bit better. If even for a day. Tiny steps...
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Hi ladies,
I haven't posted here in quite a while. I am having some digestive issues and I thought it was a stomach virus. This started on Aug. 14 and still has not resolved. I finally went to my primary doctor when I asked him if I should see him or my MO first. I just started on Anastrozole on July 25 and I started with the stomach pains and diarrhea and fever three weeks after being on the drug. My primary doctor and my pharmacist do not think it is related to the drug because they said if I would react it would not take three weeks to do so. I am not sure if that is accurate. I have done several tests and I am waiting to get all the results in but so far things have been coming back normal or negative. I am waiting for stool sample results. Have any of you experienced GI distress this many weeks after taking an AI. If my stool sample comes back okay I will be contacting my MO but I didn't want to give up on this drug unless I absolutely have to. I do know there are a few other options. Any input would be appreciated.
Thanks.
Bandwoman
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Bandwoman, I've in Anastrozole/Arimidex since July last year. When I came out of the hospital in November I came home and had a lot of GI issues, either constipated or the opposite. I went to my PCP and he tested my thryoid and ended prescribing for it, the issues continued for a month more then he upped the strength in the thyroid medicine and it finally settled. Good luck getting it resolved.
Auroaya
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I am scheduled Friday at 8:00 a.m. to have a MRI with contrast of head and neck. I have funny feeling in my right ear since about June (when I started AI). My onc did a weekends worth of research and said the only Arimidex-ear connection he could find was ringing in the ear by about 1%. He said I could go off for 3-4 weeks and see, but thought we should just do the scans that the ENT suggested. Have had some headaches also. ENT scoped me thru my nose and didn't see any tumors and he also had me see a TMJ doctor, who didn't think I needed it. I've done the MRI 2X before years ago and I am scared to death. This one is with contrast, which I haven't had. They gave me 2 valium to take an hour before, plus Prednisone and Benedryl to combat potential contrast allergy.
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Bandwoman---I had nausea for the first 3 weeks on Arimidex, then it settled.
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Redheaded1, I'll be in your pocket Friday. HUGS!
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gailani My SE weren't bad or non existent in the beginning. The depression caught me by surprise. I think it gradually got worse to a point where I finally admitted to myself there was a problem. It wasn't hell for 3 years. You need to discuss this with your MO. No one should have to "suck up" depression. My legs are much bigger too. I'm also 53. BTW I did lose weight since I switched to Exemestane. I'm a few pounds heavier than I was 4 years ago. My body shape though has changed.
Bandwoman maybe you need to see a gastroenterologist.
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Thanks for all of your responses. I am on thyroid meds and my levels were just tested a few days ago and that is okay. I have a gastro. and I just had a colonoscopy last summer which was clear. My pcp said it could take six months of testing to rule out all things. He didn't want to do that and I don't either. If it is the Anastrozole I keep thinking that my body will eventually get used to it. I am very sensitive to drugs so I really don't want to be doing the switching around this early in the game if I don't have to. My MO also said there were other options and I am aware of the other two AIs out there and of course Tamoxifin. I think because I didn't have these GI issues until three weeks after starting Anastrozole my pcp seems to think that is not the problem. I do appreciate your input.
Redheaded1 When I started having the GI issues I also had this really loud ringing in my right ear that lasted for a day and night. I have TMJ too and I have never had that happen before. I knew I had read on this thread of that happening to some others so I figured that was the Anastrozole for sure. I have a had quite a few headaches too and I think that could be from the drug as well. I hope your MRI goes well on Friday. I have had a couple of those and I know you just sort of have to try to make yourself think of other things while you are in there. I forced myself to go through the whole week and thought of every single thing I needed to do that week. I was a teacher at the time and had plenty to think about. My the time I was done with my mental gymnastics the MRI was over. Whew. Hang in there. This time next week it will be over.
Bandwoman
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does arimidex cause upper leg pain? It's off and on but bothersome.. Sometimes lower legs too. If aromasin works so much better for people then why is arimidex being pushed on us?
Also anyone here taking IV fusion fosomax? Any SE to be worried about? My doc said none? Tried the once/week pill and couldn't tolerate it??
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Red, I always get anxious before MRI's and I'm very claustrophobic. Hours before, I start pacing and wringing my hands. The valium will help a lot. I also ask the tech to tell me how long each scan will take and when we're halfway through each. I try to keep my mind occupied by counting the minutes in my head to see how accurate I am about the time. And, for anyone with BC, the MRI with contrast is better, so take some comfort in that despite the IV. Will be thinking of you..
Had 2 months of dizziness, balance problems while on Aromasin. Had brain MRI, sinus CT, ear VNG, 3 eye exams and they never found the cause. It eventually went away..
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