Arimidex - Coping with the SE's

NativeMainer

jlee--everyone experiences the SE of arimidex differently, but for me my hips, knees and back are stiff and somewhat achey when I first get out of bed or up from a chair when I've been sitting for a while.  My hands and arms get numb and then pins & needles tingly at night and when in certain positions during the day.  I have arthritis in both knees from before bc and arimidex and my experience is that the feeling is very much like the arthritis pain, but with more coming and going.  The aching and stiffness eases up quickly once I start moving, and I can avoid some of it by getting up every 15 to 20 minutes when I'm sitting and working on the computer, reading or watching TV.  If I'm in a long meeting I sit in the back so I can stand up periodically.  The hands/arms thing is probably carpal tunnel sydrome according to my PCP, and considering how much time I spend on a computer (for work and for personal use) it's not surprising.  I can manage that with braces at night.  I've got about a year left on arimidex, so I'm not persuing any more treatment for the carpal tunnel until after I'm done.  When the hips back and knees are really achey I take tylenol and get pretty good relief.  Heat helps me, too.  The aching I feel is dull, sore, like an overworked muscle.  It comes and goes and can travel around.  My joints don't hurt any more or less when touched or pressed on but massage sometimes eases the pain.  As far as rating it, that is very variable for me.  The worst for me is around 8, but usually I would rate it as 4 to 5.  Since it rarely lasts more than a few minutes after I get moving I usually don't take anything at all, except for the dog for a walk.  Walking is the best therapy for me. The more I walk the less I am bothered by the joint aches and stiffness. 

ruthbru

jlee, it could be something else like sciatica? This comes to my mind because in the last couple days I've talked to two (non-bc) friends who are having problems with sciatic nerve pain; which raditates from the hip, down the leg and is exremely painful. Anything that is more than just achiness, isn't taken care of by aspinn, lasts more than a few days, and especially if it really hurts; should be checked out by the doctor.

marybast

Jlee, you asked about a 1-10 scale. Everyone's scale will be a little different because we all have different thresholds of pain. I'm 73 and had arthritis for years before this, so I've learned that gentle stretching and movement will help, especially after first arising, as will Advil (when the pain is bad I take 4 at once to knock it out). But I rarely have to take Advil. On my scale of 1-10 the pain in my hips and knees can be an 8, but mostly around 4-5, which I can tolerate. I also take 10 - 20 mg. at bedtime of amytriptilin (a generic of Elavil), which used to be prescribed for depression but is now mostly prescribed for joint pain -- it works beautifully and I prefer it to Advil because it doesn't affect my stomach but does help my moodiness.

jlee2511

Thank you every one for taking the time to reply. This morning she woke up with a very painful right thumb. She could hardly move it. I know its probably the trigger thumb that's talked about. Do you think its strange that she is having sudden onset joint pains? When she first started the arimidex back in Jan she had headaches, some nausea, fatigue and major hot flashes. Most of those symptoms have slowly resolved but now it seems like the joint pain is getting her. Does it come in waves like this? This may sound awful but I am sort of comforted by the thumb pain, it makes me think that it may really be the arimidex causing the hip aching and not something far worse. By the way she said that she slept wonderfully last night. No hip pain. Thank you!

TinaT

Has anyone been prescribed testoterone cream?  Side effects (like acne)?  I don't mind treating the side effects of Arimidex, but don't care to get into treating the side effects of the side effects medication!!!

Anonymous

Jlee, SE's can and do occur right away when starting but also start later on, months later or even a year later.  Everyone is different but as you can see from your mom, they may subside or become manageable (livable) over time.  I developed the thumb problem probably a few months into my affair with Arimidex.  On one hand I finally had to get a cortisone shot which has worked.  The other hand I just splinted it at night and also some days and eventually it stopped.  Occasionally now I might still have one of my fingers 'pop' but so far, so good.  There is a thread somewhere on here about trigger finger so you might search it out for tips as well.  I remember thought the pain of the trigger thumb bering really intense - brought tears to me who has a very low tolerance for pain in any case.

HUGS.

TinaT, I had testosterone in my HRT, pre-BC!  Part of the reason I'm here now?

revkat

Crazy dream life anyone? I have gotten to the point of almost dreading going to sleep because I am dreaming so much -- very intense and convoluted dreams. I'm about 4 weeks into Anastrazole and am wondering if it is the drug, if it is that the drug makes me sleep more lightly so I am waking up more often and thus remember the dreams more or if it is just the summer heat interferring with my sleep.

Anyone else? Last night Jimmy Carter showed up to let you know how weird these things are!

TinaT

revkat:  I haven't noticed any change in my dream life

revkat

I did a search for Arimidex and Dreams and found that there are a few of us who seem to have this side effect. I'm going to have to do some more research on it.

zenith4289

Last week I woke up with a bruise and swelling on my forehead.  I had obviously hit my head against something and DON'T REMEMBER  a thing.  I was blaming it on ambien but i have been taking ambien for over a year without any sleepwalking incidents so now i'm thinking it could be the arimidex.  I have also had a couple of very vivid dreams - one that i swear happened - i dreamed i took the dog out for a walk - but DH says never happened so I don't know which med to blame - arimidex, ambien or gabapentin.  Also I have some neuropathy in my fingertips that at times is very painful.  Whenever i complain to Onc he just says "well I told you that could be permanent with taxotere"  does anyone else have this and get relief from anything?  so far gabapentin hasn't helped.

 well i hate to always complain on these boards so i have to say again that the hot flashes have subsided with the arimidex.  i still get maybe 3 or 4 a day but they seem more managable.  maybe just because i'm not getting one every half hour......???

Enjoyful

zenith -

I'd used ambien for almost a year with no problem until one night I went sleepwalking.  I woke up with huge bruises all down my left side, where I'd apparently slammed myself against the dresser.  Repeatedly.  I vaguely remember waking up but fell asleep between the bed and the dresser.  

Ambien is EVIL!  For me, anyway.

zenith4289

enjoyful - so how did you get off the ambien?  I need to stop taking it.  I tried to stop on a friday or saturday night but gave in and took one when i was wide awake at 1 or 2 am.  are you taking something else? 

goldenmom

Hi everyone,

I'm new to this group - just took my first Arimidex this morning. thanks to all of you for your posts. It's all very informative and I start on this new phase of my journey. 

zenith4289

Welcome  goldenmom!  Your dogs look so cute and adorable!  Wishing you the best with arimidex.  I was ready to chuck them down the toilet about 1-2 months in because I was having hot flashes every half hour but someone on this board told me to keep taking them for a few more months.  I toughed it  out (thank goodness it was cold here most of time) and now I only get 3-4 hot flashes a day.  Since it is a statistically proven lifesaver I will keep taking them.

goldenmom

Thanks, zenith. My sweet dogs have been wonderful in helping me recover from surgery - my own personal "therapy" dogs!

Looks like we have a similar diagnosis. Glad to hear that the SEs lessen after a while. I have to admit that all the various SEs sound pretty scary to me now, but if it helps me in the long run I will definitely learn to cope. 

Emme

Hello~ I'm new to this thread and hope to network with all of you and making mine and your Arimidex journey more enjoyable...(notice I didn't say bearable...I am hopeful! )..

I am 45, had a hysterectomy on April 1st and began using Arimidex two weeks later....I feel like I am swinging on the fiery gates..it has to be answer...hot flashes certainly can not be so intense! I am hoping that these might calm down after a bit.  I do take Effexor, I can't imagine what they would be like without this!

I am also having issues with fatigue.  It doesn't seem to be the I need a little nap and I will be fine fatigue...It is the ohhh I am sooo damn tired...when will I fee normal kind of fatigue.  When does this get better? Are there any suggestions out there?

I actually was considering losing the 30 pounds I need to in order to lower my bodily estrogen...and getting off this med...any comments would be welcome.  Sending love and prayers...EM

Enjoyful

Zenith-

After stopping Ambien, I had a few late nights, too.  I use Costco's over the counter "Sleep Aid" OR a Xanax before bed if I need it.  The Sleep Aid gives me a morning headache but it dissipates pretty quickly.  Ambien's amazing until it turns you into a zombie! 

Enjoyful

Hi Emme -

I had the debilitating, walking through mud fatigue for many months.  Now, a year after starting it, I feel a bit better and I don't need 15 hours of sleep/day anymore.   Having to walk my sister's dog helps - I just staggered around the block at first but worked up to an hour/day.  

I don't know what will work for you, but walking definitely helped.  Maybe try just like 10 minutes/day to start?  Oh, and a good strong pot of coffee in the morning!  :-D

E

ruthbru

Getting some exercise is really, truely the best way to counter fatigue!

countess

I have been on arimidex for 15 months.  Recently I had my hand operated on for a trigger finger that started being very painful months ago.  I wake up through the night with both hands so painful.  Deep down I've wondered about it being a SE.  Recently, I've also had 2 fillings fall out. In reading these messages I am now wondering if all of this is a side affect.

Claire_in_Seattle

Countess.....don't know about the trigger finger, but had all the fillings in my mouth replaced prior to BC.  This just needs to be done sometimes.

My big problem was not having a great dentist, and I did not know this until I made a cross country move.  Good luck.

Do the fillings, as will get worse if you let this stuff go.   - Claire

walley

Hi everyone,

I started my anastrazole about 4 weeks ago.So far  so good.Feel alittle tired that's all.Reading all the se 's seemed scary but I don't think about them much.Just take it with my vitamin in the morning and go on.It looks like there are a few ladies just starting the pills on here.Good luck everyone.We will compare notes:)Have a good week.

Anonymous

Hi, goldenmom, emme, walley

You will find a goldmine of information in this thread - and keep asking questions if you can't find the answer, we're all always learning.

Maybe we ought to do a "recap" on everything we do???

Sleeping - I used to use VALERIAN ROOT - it's a homeopathic liquid, or tablets.  Usually in any good health food store.  I know Whole Foods has it.  I used to get it at the Bethesda MD Co-op.  A few drops under the tongue, or in a little bit of water.  I REALLY worked for me.  I was terrified of trying Ambien - but Valerian Root was nice, no "hangover" not drastic ( like some meds) but very calming, helpful.  It is still a "medicinal herb" s I don't know if it's contraindicated with an AI.

Anonymous

Just started another thread in this Forum; NOT TO REPLACE THIS ONE - but just for FACTS, data on what we do for SE's - thought it might be easier for "newbies" to have "just the facts, m'amm" in one place:

Topic: Help for Side Effects of AI's: Specifics

NativeMainer

I use Valerian tincture, Skullcap tincture and melatonin to help me sleep. 

According to my reference book Mosby's Handbook of Herbs & Natural Supplements valerian is a classs 1 herb (safe when used appropriately).  It is not advisable to use if you have liver disease.  Valerian increases the effect of alcohol,sedatives, hypnotics (sleeping pills) and interferes with the effects of warfarin (coumadin) and phenytoin (Dilantin).  Valerian is metabolized by the liver, overdose causes liver toxicity.  No research on safety in pregnant or lactating women or children.  

Annabella58

Hey ladies, haven't been on in awhile.  Any votes for Arimidex, non generic vs. the new generic?

My onc says generic is exactly the same but I sure seem to be hearing an awful lot of ladies complain of new and odd SEs from the generic.

Any info welcome.  My pocketbook is empty!

xo

Anonymous

annie

ACTIVE ingreditents are all the same - it's the "fillers" that are different.  Most people don't have a problem, but if extremely sensitive to "fillers" guess their cold be a problem.  Someone, once, can't remember where? posted a lik to a website listing ALL the generics with their "fillers."  I get mine at Costco - cheapest price, and they usually use TEVA, which is my preferred generic.

Claire_in_Seattle

Annie......why would you ask???  Generic, of course.

For me, the difference between $135 per month and $5 per month.

I have minimal side effects with either one.

ruthbru

No difference for me either; except in the pocketbook. Like Claire, minimal SEs either way.

Annabella58

thanks, gals.  I am leaning to generic now.  I have a few friends who have tried the generics and got much, much more achies, etc.  they felt it was "like starting all over again" getting used to SEs.

I'm pretty good with SEs now, of course the usual stuff, like stiff achey, no biggie.  Sort of scared to go there, but since active ingredient is what causes the SEs, I should think the SEs would be identical.

If you guys don't mind, how long since you've been taking the generics?

thanks alot!