Arimidex - Coping with the SE's
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Thank you all - I sometimes don't know how I'd get through all this without help from everyone on these forums.
I do feel a lot better now - having had my rant :-)
I keep telling myself how lucky I am in other ways. I have an amazing DH who is very supportive and sympathetic. I now have a job that is great working with a bunch of amazing and supportive people - it pays a lot less, but I have a lot less responsibility. I don't get hot flashes like some of you - that's gotta be a plus! :-)
I know the money and bills will sort themselves out eventually. I have a wonderful friend (we've been best friends for over 40 years now) and her father once said to me "You may not have everything you want, but you'll always have everything you need". Wise words.
I've actually slept fairly well for the past two nights now, so feeling a lot more relaxed. I was always a heavy sleeper, and need my 8 hours a night, so lack of sleep on top of everything else has been my main problem, and causing a lot of the depression and anxiety I think.
I'm ready to face the world again today, thanks to all the hugs I've received from across the sea. Thank you Sisters
Trish
xoxo
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Hi ladies. I started generic Aromasin about 2 months ago. I have some achiness and fatigue, as well as some sleeplessness. The weird thing is I wake up in the night often because the thumb, index and middle fingers of my left hand (sometimes my right hand as well) are asleep! Has anyone else experienced this? If so, please send me a private message. I don't want to clog the board up with this.
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charlottesmama, I'm going to answer you here, because what you're describing sounds like Carpal Tunnel Syndrome (CTS) and it's been linked to the AI's.
My onco told me the risk of getting CTS because of Arimidex (which I'm on) is very low -- she said it's around 5% -- but I suspect it's higher than that. Lots of us have had CTS or "trigger finger" or "trigger thumb" (possibly deQuervain's syndrome) soon after starting on an AI. I began taking Arimidex in June 2008, and in November 2008 I noticed that the thumb, forefinger, and middle finger of my right hand felt tingly and/or numb during the night. I told my PCP about it at my next visit, which fortunately was about 2 weeks later. He confirmed my suspicion that it was CTS, and wrote me orders for a wrist brace.
I wore the brace at night, every night, for maybe 3 or 4 weeks, until the tingling was gone. That's when I put 2 + 2 together and realized I had a habit of curling my hand and flexing my wrist as I slept. Once I figured out how to prevent the wrist-curling, the symptoms went away and I didn't need to wear the brace anymore.
So, your question is very relevant to this thread. If you search "CTS" or any part of "carpal tunnel syndrome," you'll find whole threads on the subject.
otter
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What a tremedous wealth of information we have on this board. Thanks to all who share their wisdom (and their wit too!).
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And I ditto otter (who is so amazing I can't say it enough). Try the wrist brace. I also started getting the CTS symptoms and did get the trigger thumb on one hand. The wrist braces worked for me as well. I haven't had any problems after wearing it/them for several weeks so give it a try. they are relatively inexpensive at the drug store.
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Another vote for wrist braces. I wore them for a few months and they really helped.
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HI All,
another ditto for carpel tunnel after starting Arimidex and wrist braces as low cost solution. Also want to add for folks starting out and having troubles/pains, don't suffer in silence and don't give up. I had a really hard start on Arimidex, but kept fiddling with diet, medication (have 3 herniated disks in neck that went wild when I had the added pleasure of arthritis from the Arimidex, plus general stiffness, joint pain, etc so I tried small dose of pain pills, NSAIDs, muscle relaxers - all at different times) to help keep me positive. Sleep and exercise are a must! I am not my old self, but I am much better than when I started. It may get worse again as I am only 9 months into my journey, but I feel sure that I will stay committed unless some major health issue emerges. My cholesterol level has really shot up so I am trying to change my diet now to see if that helps. Failing that, I will probably try a statin or niacin.
Never a dull moment, but sure beats the alternative!
Best, Beau
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Exactly what Beau said!!!! Great summation of my experiene too. I went to a physical therapist to get exerecies & treatment for my hands after my first 3 months on Arimidex. Also see a massage therapist once a month, ACUPUNCTURE once a month ( more often when I started).
GLUTEN FREE, really helped me eliminate joint pain. DAIRY FREE now too, no more sinus infections, not AI related, but troublesome.
Will let you know after Physical in late November what cholesteral is doing ;( Thanks to Ruthbru, I take the Slo Niacin, and I think that will help.
the KEEPING POSITIVE part, probably what is most important to me ( with a history of severe depression, and taking meds for a long time for that) it's sort of the experiene learning about that part of my life, that's really been so important learning to live with being a member of the A Team!
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I, too use a wrist brace at night, alternating hands depending on which one is bothering me the most at the time. CTS may only be measured at 5%, but so is truncal lymph edema after rads, pain syndrome after rads, radionecrosis after rads and I got ALL of those. So I don't pay much attention to the percentages anymore.
Earlier someone mentioned the placebo effect and the strength of the effect of the mind on the body. I totally agree. There are times when I do things that I know have no scientific basis but I "know" it will help. And it does. If it's all in my mind, so be it. One thing that helps me is looking at a burning candle, preferably a scented one. Another is listening to ocean surf. We all have our little rituals that help, and we are entitled to them! Thanks for the link, too (salt lights)
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I found a great CD at Walmart called 'Sleep'; it's ocean surf and music.....very relaxing and helps me fall asleep at night.....when (not if) I wake up in the middle of the night, I turn it on again and it helps me doze back off.
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Hi Trisha Ann,
Just to let you know I've felt all the same feelings as you since taking arimidex, I was a very fit 63 yr old running full and half marathons and running my own business confident and very outgoing but now full of aching joints trouble getting out of a chair and very depressed.My oncologist said I was suffering from arthritis and not 21 anymore!! I thought it was just me suffering do these drug companys know what they are doing to us? Be positive don't give up the fight love to you all,
Barbara .
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Wow! Thank you all so much! I thought it was purely coincidental that the sleepy fingers coincided with starting Aromasin. Ironically, I'm a pastry chef so the use of my hands is essential. They don't bother me during the day. I take some Motrin in the morning and that seems to ward off the aches during the day (my job is VERY physical and I'm on my feet all day). I take another dose when I go to bed. I felt some mild depression the first month or so, but am feeling just fine now.
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Barbara 1148 - did you slug your oncologist??? Just wondering. I would have belted him, just swung out for all I was worth - with whatever strength I could muster! DAMN, some doctors ( who obviously have never taken an AI) can be so DUMB. Maybe very wise about their oncology, but DUMB about what these AI's are doing to us.
It is NOT arthritis, it is NOT age related, it is the AROMOTASE INHIBITOR. Which, is also probably saving our lives - but not acknowledging what it FEEEEEEEEELS like to be taking it - doesn't make the whole process any easier.
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Thank you all for writing these things down....I have been on it for 3 weeks now....my lower back has been bothering me for over a month now but holy dinah...I have to rol off my mattress and onto the floor and then get up...your words have realy helped as the first thing I do is take hot hot shower to get moving...and my left hand is achey...and today my left toe suddenly hurt like hell....like I had sprained it...but I haven't. Not depressed and hoping to hell that does not revisit me...the last two years have been hard for a myriad of reasons and I am aiming a joy....and sticking to my 24 hour rule...if I didn't have arthritis 3 weeks ago, i sure don't have it now..but I suspect this is what it feels like....
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oh yeah...and I am going to try taking the arimidex at night like you fokls suggested...it is kicking my butt and i am tired!!!!maybe it will help me sleep!
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The first day or two I took the little white pill in the morning and felt awful. I started taking it at night and continued up to the present (2 yrs.) I take a benedryl knockoff at night along with the arimidex and lipitor. I sleep fine most of the time.
Like others on this thread, I take calcium and D3, fish oil capsules and glucosamine/chondroitin. I try to exercise at least 4 days a week. Some weight lifting and brisk walking for 3 miles. I also play 18 holes of golf 2 days a week. I do ride in a cart but the golf is still some exercise.
I wonder if not having a lot of SEs means the arimidex isn't working as well?
Good luck to all of us!
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Here is something interesting from an arthritis website, I'm thinking it would also be true for arthritis type symptoms causes by arimidex:
Being overweight, even just moderately, impacts weightbearing joints and can increase the pain of arthritis. Research has shown that during walking the hips, knees, and ankles bear three to five times a person's total body weight. For every pound a person is overweight, three to five pounds of extra weight is added to each knee during walking. In contrast, a ten pound weight loss causes 30 to 50 pounds of extra stress to be relieved from the joints.
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Carole- I take 4000 iu vit d, 1200 calcium and fish oil capsules. never needed the other but my exused it and it helped...will check and see how it interacts with heart meds and I am turning on the heating pad...I've had this before...body just feels out of whack. I dance, lift weights and do various forms of cardio but the last three weeks have been slow...lots of walking but I am so incredibly tired...different from the tired of the heart attack last March but....nothing normal for me....even with lousy sleep....which i take zopliclone for....
good point Ruth
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There turn out to be so many more SE's on arimidex than I thought possible and had been attributing to other things. More joint pains, numbness, I already have neuropathy from Chemo, tiredness, sleep messed up totally, tingles in my fingers, my skin feels just terrible sort of hard or bumpy. This new normal is not anything I like whatsoever! Grrrrr, glad if it keeps the beast away but seriously if these are passing SE's will someone please tell me.
Plus I am feeling cranky.
Ginger
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Hi All...
Haven't posted much...but been reading like crazy. I have been on Arimidex generic since August, 2010 and have had varied side effects. Some have gotten better, a few new ones have appeared..at least I think they are from Arimidex. From the beginning I have had joint pain although the NSAID I started taking for osteoarthritis a few months ago helps some, then trigger finger started on one hand but has been rare for a few months, feel exhausted sometimes and everyday get tired mid afternoon...really tired...like I need a nap, feet swelling to the point I bought 1/2 size larger shoes and now bumpy itchy patches on my foot and arms, oh...and my scalp. Really itchy scalp.
My question is...does it matter that the Arimidex is generic? Read somewhere else that some women got different side effects when switching from the original to generic and not sure I believe that could be true. Really would like itch relief. Does anyone have any experience switching between original and generic and notice a change in side effects?
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When I switched to the generic, I didn't notice any difference except the pain at the cash register was less!
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Same for me.
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After reading all your comments I feel that all of you not living in the UK, actually have to pay for your pain, we have the NHS but wonder if we are getting the care we really need when I see my onc next time, I'm showing him many of your letters perhaps he will have to admit arimidex does give you joint pain and it isn't arthritis!!!!!!
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hi ladies, so after 1 yr on Tamox, switched to arimidex 2 weeks ago, as onc says i'm officially menopaual... so far, so good.. already had the hot flashes, and lack of sleep and some general aches and pains from the tamox i think, dosn't seem to be any worse yet, but is suppose 2 weeks is not very long.. we'll really see in a month or 2 i suppose.
I know this was posted a day or 2 ago, but i'm very interested to hear i'm not the only one waking up with thumb, index and middle finger asleep.. happened a lot when i started tamox, ( every day for a while), not so much these days, but still occasionally.. Since it would go away after i was up and about, never brought it up with the doc, but always wondered what the heck was going on... CTS huh,.... if it starts being a regular thing again, i will definatly bring it up. ( i never know which aches and pains are relavent ones .. and i hate listing off too many at one time cause then i feel like a hypocondriac.. and feel like a complainer (silly , i know, but true.. then after the appt, i freak myself out cause i didn't mention something and maybe it was really important.. sheesh.. ).
anyway, thaks for sharing your arimidex stories.. nice to know what to expect and get a handle on what i should be bringing up with my onc.
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i will definatly try and make sure i keep moving, sure does seem to help. even when i've been sitting at my desk for more than an hour,i'm really stiff when i get up and it it takes a dozen steps to get going.. feel like an oooooldddd lady some day's.
onc started my on 1000mg calcium and 800 ui of vitamin d daily with the arimidex... hopefully that will help keep the bones together.. i'm interested to find out the results of my bone density scan i had a few weeks ago, as a baseline starter.....
I think iwill look for that sleep cd too..( thanks ruthbru). i have a couple other similar ones that i like ( relax peacefully) , but i'm heard them so often now, i'm getting tired of them... need a new one
although the one draw back of my bedside stereo .. it has to be off for the alarm to turn on in the morning, so if i fall asleep with a cd going.. the alarm dosn't go off... doh.0 -
Hi Georgi Girl,
I am sorry to hear about your problems on the Arimidex. Most of your troubles sound like the usual - joint stiffness,etc, but I would get the itchiness checked out. It could be from a dry scalp or simply a case of dandruff, but it could also be some sort of allergic reaction. Don't suffer needlessly. Get it checked out. You can always switch to amother AI if needed.
best, Beau
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Barbara, I lived in London for years, and after getting SUCH BS from my local "surgery" - I started to see doctors in the "Private system" - all covered by my wonderful health insurance - and every time I hear people wanting a "health system like they have in the UK" I SHUDDER with fear. I was so sad to find how uninformed the GP's in my local London Surgery were - truly, uninformed and often misinformed. The treatment in the "Private" sector was so superior, from the way the patient was treated, to the information, wisdom of the Doctors ( Misters
- this was many years ago, maybe it's improved.I know it is FAR SUPERIOR in Canada, friends living there LOVE their medical treatment. But, like your experience, I felt I had to teach my local doctor too much.
Good luck with your doctor - hope he listens to you.
Georgi Girl - I developed ezcema after chemotherapy - first thought it was the Arimidex, cuz I started it right after chemotherapy - but went off it for a while, and ezcema got worse.
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Good idea Beau...and I did think it might be an allergic reaction to the itchy rash on my foot, arms and now scalp (no dandruff or anything like that). I am going to ask my oncologist when I see him in about 10 days for my next Zometa. Overall I am really not complaining if it is working...just trying to reduce side effects if I can.
Thank you to carolehalston and ruthbru too...I kind of thought there wouldn't be a difference...but no harm asking.
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I have managed 6 nights in a row of uninterupted sleep! It's bliss. While down in the dumps the week before last I missed a few days of Arimidex, and I'm wondering if that has made a difference. I'm still taking it now, and I see my onc this week, so will talk to him about it.
I've also been taking glucosamine and fish oil for the past 2 months or so, and on the weekend it seemed that all of a sudden my joint pain had almost diminished to nothing. Well - not nothing, I still have trouble getting up, but I spent the whole weekend in the garden and I haven't done that since before the Mx.
I feel so good! Just wanted to share with you all, it's not often we can say - wow I actually feel really good :-)
Trish
xoxo
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