Arimidex - Coping with the SE's
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I have been on Arimidex since Oct. 28 and I am happy to share that I have no long term SEs to report. The first week of starting Arimidex, I did have nightmares every night and that was unusual enough that I told my oncologist's nurse about it and she did some research and found out that it was probably caused by the interaction of Arimidex and my thyroid medication. That worked itself out because the nightmares have stopped.
The first week I also had trouble falling asleep so I just changed the time I took my pill from an hour before bedtime to just before I went to bed and the problem disappeared.
No hot flashes, no night sweats, no muscle or joint pain or change in bowel movements. I have been able to maintain my daily exercise routine. I have actually changed my routine to include yoga and weights ... good for the bones.
I was actually terrified of taking this pill. I had not yet gone through menopause before chemo and did not have any experience with the side effects of that "wonderful" thing, and was concerned that it would affect my quality of life.
Happy to report all is well ... each person is different. Good luck everyone!
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Anne - everybody is different as far as side effects go. I had no side effects whatsoever when I was on Tamoxifen. I was on it for a year and then had my hyster/ooph and was put on Arimidex. The only side effect I seem to have is joint pain but do exercise and do yoga regularly. Not sure what to blame it on - the hyster/ooph or the Arimidex. I have been on Arimidex for 1 1/2 years now. I did put on about five pounds at first but have been working to get them off. It is coming off very slowly but hey at least it's coming off!!!
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EvelynMarie,
Thanks for your post. I was reluctant to post to this thread because it seemed to be geared to helping those with se's cope. I have been on Arimidex for about 2 weeks less than you but have experienced no se's. I go to the gym every day (almost!). I was not overweight but have virtually eliminated sugar from my diet, and I had a great sweet tooth, and lost about 6 pounds just by doing that. I had gone through menopause several years ago but never took hormones and weathered the hot flashes pretty well. Yes, we are all different and I may have se's as time goes by but I don't think women should be scared to at least give Arimidex a try. Caryn0 -
Thank you for all of the reassurance! I'm hoping that I may have limited SE's too...
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~ Just keep moving and when I limit my sugar and processed food I do much better.
Balsie
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I have been on Arimidex for almost a year. For about the first 9 months I would say I had very limited side effects other than picking up weight which I have been unable to drop, despite continuing to go to the gym and eating responsibly ( I am a diabetic and have been totally controlled for several years because I watch my diet very carefully). But in the last couple of months I have had DeQuervains Syndrome in each wrist ( with no trauma or reason) requiring cortisone shots and my sleep as gone to the dogs. I fall asleep ok...but wake 1-2 times per night and can't go back to sleep. I have been taking my Arimidex in the morning and up until recently it had not seemed to bother me. While I have heard of joint pain...DeQuervains is problems with the tendons in the wrists...not the bones itself. Anyone else have unexplained problems such as this ? I do see that others have experienced the sleep problems and I am trying light stuff like Tylenol PM and it helps but I still wake several times a night. It does seem to make it easier to go back to sleep but it is beginning to worry me and sap my energy at work during the day.
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We are all different...I have been off arimidex for a week now and my hands are almost back ot their normal size and only the left is aching..my back is no longer sore and I can get out of bed in the morning without having to roll onto the floor first and drag myself up...I have also taken the valerian my naturopath gave me ..two nights in a row..worked the first night not so much last night as I had a sick kitty on my hands....
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The rings I bought while on Arimidex, now slide off my fingers if I put my arms down.
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Sandeeonherown,
Hi--I will be done with Arimidex at the end of Jan--did you just go off cold turkey, or did you go off gradually? I am so anxious to be over these sore joints!
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Hi, to the "newbies" - good to see you, and the "bad news" is that the SE's don't usually start until after 3 months on the little white pill. I hope you all get a PASS, free PASS, as so many women do.
Anne - I kinda giggled when I read your post, and just want to make sure that if you find a way to lose weight on an aromatase inhibitor- PLEASE, after you make sure to PATENT THE PROCESS, let us know.
LISTEN TO RUTHBRU - keep moving, which comes under the idiom of "do as I say" cuz I'm still not moving enough - but getting better at it.
Cliff Notes: Gluten free and acupuncture, Vitamin D levels above 40, glucosamine, COQ10, Fish oil, sometimes a good sleeping pill, little hand fans, layers of cloths, and the nerve to strip in public. Remember once during the summer, when I was even tempted to remove my t shirt, kinda wondered to myself if an ole lady with no boobs could get arrested for being topless in public. Don't know the answer to that one, will let you know next summer, if I'm tempted to find out.
REMEMBER - any SE is better than the other option, and there's usually something one of us has found to help with any SE.
Almost Merry Christmas, Happy Hannakah, and HEALTHY New Year for us all!
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hi JannoD,
Lots of us have had trouble with our wrists. Arimidex is probably the cause. Wrist splints reallly help. I too was diagnosed with carpel tunnel in both wrists. They were especailly painful at first, but I wore 2 hand splints every night to bed and kept one in the car for my right hand (which was the most painful.) I cut back on my emailing/texting as well. I am almost a year in now and I still have pain in both wrists, but it has gotten better. I just wear the hand splints to bed most nights.
I hope that your troubles with your wrist improve soon! Defintiely look into the splints before getting a steroid shot - although that is a possibility too if it doesn;t improve.
My hands/fingers are definitely a bit swollen too (as well as my feet). I can still weat my engagement ring but my wedding ring doesn't fit now. I keep hoping that I will loose 10 pounds and than it will get on, but as Sunflower says, if someone figures that out, patent it!
Warm wishes to you all for a fine holiday season and healthy new year! Beau
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Patent it and SHARE the enormous wealth you will accumulate with us! 0
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Okay, I have read almost this entire thread bit by bit, a little bit each night.
Finally, Otter, on Dec 12 @ 3:52pm, you posted what I have experienced & was wondering if anybody else had. On the difference between the generic brands.
I have been on Aromasin since Feb 09. Had minor SE's (weight gain, some stiffness, brain fog - things I could live with.) In May of the year, was switched to generic from TEVA, used that for 3 months & hardly noticed any difference, just a bit more stiff. Then comes new insurance & a new generic, this from Roxane. OMG - this is awful!! I am like an old woman (I will be 60 next month & feel like I'm 95) - the stiffness is very bad but the worst thing is the numbness in my hands, esp in the morning. I wake in the middle of the night from the pain, esp in my right hand. I have to put my arm down at my side to relieve it. I have a h*ll of a time getting my makeup on in the morning, keep having to lower my arm down by my side, let the blood flow back down to the hand & continue on. I can hardly do my hand stitching anymore-working with a needle is terrible.
I am certain it is the different generic. I'm not due for a refill unil Jan 7 so am going to talk to a nurse at Medco who fills the script to see if they can get me another generic, I'd even go with the TEVA again. This Roxane started giving me major fits within the first week to two weeks after I started taking it. I never had this crap when taking the original Aromasin. I was shocked that I felt like this. Sure, I had/have my share of hot flashes & some SE's, but not like THIS.
I'll even go back to Walgreen's Specialty Pharmacy where I got the TEVA generic even though I won't get my buy 3/pay for 2 months insurance deal & who call me all the time asking how I'm doing. (which bugs the tar out of me!!).
I never thought I'd be one to have a major SE from this crap, but here I am.....
I don't have an MO appt until April, so they don't know I'm having this problem because I haven't called them. Is the hand thing Carpal Tunnel ?? I don't want to end up having surgery to correct something that is caused by some pill that I'm taking - that is ridiculous as far as I'm concerned.
Sorry this is so long. Was wondering if someone else was having a problem between the generics, so was relieved to see your post, Otter.
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Just started Anastrazole a week ago. My elbows hurt, arm muscles hurt and never had that before. I had hysterectomy 5 years ago and thought all hot flashes would be done, no matter the pharmaceutical. I put on and take off a hoodie sweatshirt about 20-30 times a day. I have no temperature fluctuation tolerance. I always liked it cold. Now I shiver and want layers and layers. If the temperature goes up 1 degree too much, I feel like I am roasting in hell and my brain is boiling. It is not so much that I feel hot flashes, flush, because I can feel cold and freezing almost as often. I have hypothyroidism but my TSH is normal with suppements. Just saying, crap. Hot, cold, burning, freezing, dysregulation...........not loving it.
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Kimberly--after natural menopause our bodies still make a tiny, tiny bit of estrogen. Instead of the ovaries making it the aromatase enzyme converts fat and cholesterol to estrogen in our fat cells. So when we start taking an aromatase inhibitor (AI, arimidex etc) we have another drop in circulating estrogen. Unfortunately, out bodies respond to that the same way it responds to the big drop in estrogen when the ovaries wear out. So we get the side effects after starting arimidex and the others. In a fair world once we'd had menopause symptoms we wouldn't have them ever again!
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Kimberly - you used the word "normal" re: TSH. Since 2003 The American Society of Endocrinologists have said TSH should be BELOW 2.5
Just want to make sure you aren't using the "OLD" measurement of below 6.
Many doctors still do, so if you just were told "normal" - I suggest you get the actual test results.
What supplements are you using????
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Valjean - get thee to a drugstore, or better yet gt a prescription for wristsplints in case you have insurance that will pay, and start wearing them asap, every night. someone long ago suggested this for me when I started arimidex. I think it saved me from surgery - and, the carpal tunnel has long since disappeared on its own.
After many months of using and getting great relief from the wrist splints(like a year) I found a dr who specializes in rehab medicine and she had a machine which tested for carpal tunnel and sure enough, i had it. The great thing was, she told me that because i had used the splints I'd headed off the need for surgery. She then gave me a prescription for wrist splints, which I've not used, as my old ones seem perfect.
Just make sure to go a the kind of pharmacy where they know their stuff about wrist splints - you need to get the right size. wear them during the day, too - really.
Good luck - buy some today!!
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Hi all, just reading through some of the posts, I haven't been on in awhile been busy, back to work, holidays etc...
Doing well on Anastazole, not too many complaints here thank God!
I do have one issue going on and not sure if its from this, herceptin or after SE's but wanted to see if anyone else has experienced it.
My finger joints bruise and swell and the slightest thing, if I pick up a shopping bag, or stir something that is harder to mix, just anything. If something hits my inside finger joints boom, swelling, pain and balck and blue and it lasts about 24 hrs then goes away.
Anyone have this???
Ginger M
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and I can see that I should be proofing my posts before hand hahahaha....
it is bruise and swell AT not and
and... black and blue not balck hahaha
I will proof from now on, I still have no clear head, or spelling abilities
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Took my very first Armidex this morning. Had a total hysterectomy 7 weeks ago. Also increased the Effexor to 75. from 37.5 since the hot flashes weren't under control and they are about to get worse. Who ever would have thought that this is what we would be doing? I knew breast cancer was a scary lump, surgery and maybe chemo but I had no idea it was this abrubt change of life garbage. At least I haven't burst into tears at work yet and honestly, that was my biggest fear.
Edited to add question:
Has anyone tried the supplement Osteo Bi-Flex or Chondroitin for the joint/muscle pain? Wondering if that will help...
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Yeah, who knew BC goes on and on and on. From the outside looking in, you'd never know.
Ginger - I have had the same thing for years. I have attributed it to my fibro., I guess bcuz I didn't know what else to attribute it to. My palms. fingers, joints of my hands bruise very easy, but, and this is weird, it goes away in about 24 hrs, sometimes less.
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Kimberly1961, I am having a similar problem with temperature control. I have hot flashes sometimes, but mostly I feel colder than I did before I started taking anastrozole. This winter, I am inching the thermostat up where I used to inch it down.
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HERE HERE to the no temp fluctuation tolerance! We bought a new truck a few months ago & my only stipulation was it had to have heated seats & separate climate controls. Now dh doesn't have to get burned up or froze out every few minutes. The truck however is in danger of having some of the contols wear out from overuse.
Am feeling a bit of an emotional wreck these days. In spite of the good reasons for being depressed (dad passed a year ago, brother just diagnosed with stage IV kidney cancer with mets to the spine,and some 'issues' with a couple of the kids) I can't really say it is depression, just feel on the brink of a meltdown all the time & hate feeling out of control. Help me Ruthbru! You must know of a tea, or potion. Am inclined to blame the AI.
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grdnsive--what you describe is consistent with situational depression, and you certainly have enough situational stuff going on to qualify! St. John's Wort could help.
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Ginger - easy bruising is definitely a SE of Arimidex - esp. hands. The slightest bump - WOW, swelling - and black & blue.
I keep several plastic vitamin bottles filled with water in the freezer ( learned this from a young friend who called them "boo, boo bottles" - her mom is my best friend! smart mom!) and after I ice the part that's bruised - I SLATHER it with Arnica Gel - keeps the b&b away. The ice really helps to keep down the swelling.
WRIST SPLINTS - and - a PHYSIOTHERAPIST to treat your hands, AND to give you stretching exercises that really, really, really help.
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I am glad to see that others are having the same issues with the hot or cold spells. I have found I am fine at 68 degrees. Anything above 68 and I feel like I am on fire one moment and cold the next. I can stand putting blankets on me but you can't keep cool when you live in the South. grrr 75 here today.
I am about ready to see the ortho over my trigger thumb. The pain has not settled down at all. I can't wear my gauntlet because it makes it hurt worst therefore I am seeing some swelling today in my hand. Now I wonder who makes me generic pills because my knees are back to killing me and I can't stand to put weight on my feet after sitting for any length of time...even my heel hurts to touch it. grrrr The gift that keeps on giving. I go Monday to see a LEPT to confirm if my leg also has lymphedema. Oh joy.
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grdnslve, get a kickboxing DVD or a punching bag and HIT something!!! Besides doing that and/or some other exercise, also be sure to do nice things for yourself on a regular basic. Get a facial, go out to coffee with friends, buy a new scarf or jewelry, take a cooking class, or a class in Mandarin Chinese, or whatever would be fun, interesting and give you a break from all the 'cancer stuff'. You (we all) so deserve it!!!!!!
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flannelette ~ Thank you for your reply to my post. This coming week I am going to stop into Walgreens & Rite Aid both to see what they can tell me about wrist splints - what they have & the price. From what you say, it will help & I'm certainly open to trying it to possibly avoid surgery in the future. Does anyone know if carpal tunnel syndrome resolves itself after one stops taking the AI? Or is the damage permanent?
I forgot to add that I stopped taking Aromasin generic for three weeks - didn't want to but felt I had to make a break in the pain. Have read that some SE's are less when the AI is restarted. I have had a bit less pain, but it is still there. Just resumed that little white pill yesterday. Am hoping for the best.....
Edited to correct my misspelling of flannelette's name. My bad!
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Balsie
The first one I found who went "flat" on Effexor while taking arimadex. And the itchy head!! Thought I had fungus - diagnosed excema. Nothing helped but getting off Effexor.
Having itchy skin all over anyway - is this one of the anastrazole side effects? Old lady skin - dry and itchy. At least the head isn't so bad.
Hang in there! Hot flash away with your right mind intact!
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Valjean
make sure you buy the spints that WRAP, close with velcro not the stretch kind you pull on. You need to be able to ADJUST the tightness. ALso, check in at medical supply place, may be more expensive, but better selection than Wal-Mart. a GOOD independent pharmacy near me had the bet selection.
Physiotherapy also really, really helped me. The treatment AND the exercises I was given to do.
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