Arimidex - Coping with the SE's

ginger_mea

Chris13 - I read it here on the site, can't remember where maybe on the homepage and then typed in harmone therapy but its here someplace.  I will check later and let you know for sure.

I too did not have hot flashes during menopause and was full of estrogen!  It concerns me too.

GingerM.

ruthbru

Don't worry about the hot flash stuff. What can you do about it anyway?

Chris13

Back with the ankle question...thanks for earlier responses. One ankle is swollen and painful like my other ankle was years before with a sprain. Was jogging, and felt slight pain for a few days, then this worsened. Doing ice, elevation, NSAIDS, compression with no improvement. Finished my first month on AI. No other SEs (age-related stiffness) so far. 

Planning to check in with a podiatrist tomorrow, but doubt she knows anything about SEs. If this is an AI problem, I'm wasting my time with the podiatrist, or my primary doc. 

I can walk, but the main issue is our upcoming anniversary trip in a couple weeks. If an SE, am I making it worse by walking (muffled with pain killers.) If a sprain, does AI make healing more difficult?

In the scheme of things, this is minor...compared with what other ladies are going through with SEs. But we planned this trip for such a long time, sigh.

mimi1964

Chris sorry your ankle isn't getting any better.  Really had hoped it would but sometimes really bad sprains take several weeks to improve.  Keep the faith. 

As for hot flashes count yourself lucky if you aren't having them.  I agree if you had little to no hot flashes during menopause then you most likely won't have any with the medication.  I thought I was going to be home free without any either, however I started experiencing them after I had been on the Arimidex for 6 months. So you never know. 

ruthbru

This is taken from chemocare.com...a reputable website, part of their discussion on arimidex (note the last bullet):

Arimidex Side Effects:

Important things to remember about the Arimidex side effects:

• Most people do not experience all of the Arimidex side effects listed.
• Arimidex side effects are often predictable in terms of their onset and duration.
• Side effects of Arimidex are almost always reversible and will go away after treatment is complete.
• There are many options to help minimize or prevent Arimidex side effects.
• There is no relationship between the presence or severity of side effects and the effectiveness of Arimidex.

Chris13

Good to know about the absence of side effects, Ruthbu. You're the best when it comes to keeping us scaredy cats on track!

Gingerbrew

ruth thanks for posting this list about Arimidex, especially "There is no relationship between the presence or severity of side effects and the effectiveness of Arimidex."

I think, like many of us I am always looking for signs that something is working or not. We want to "know" don't we.

Ginger 

ginger_mea

Thank you Ruth and your are right.  I don't mean to always look to the dark side, my mind is just not my own anymore LOL...

Mimi very true, you never know... thanks too

Ginge M.

Bogie

Does Arimidex compromise the immune system?

ruthbru

no.

NativeMainer

Divine Mrs M--no toes stepped on, I got myself turned around when I made the original post and was wrong.  It's important for those mistakes to be caught quickly and fixed so that they don't cause a lot of confusion. 

spunkyboobster

Starting Arimidex this week and am more nervous about this than anything else I've been through including BMX and ooph. Would love to hear your tips. What time of day do you take it? What's your manufacturer? etc.

Thanks!

marycarol5

Hi, there... I was having a HARD time sleeping, which didn't even happen when I had my first cancer diagnosis. I messed around with the timing of my meds (except my synthroid which is always early am, then I go back to sleep!) and found the best routine was anastrozole by lunchtime at the latest, and effexor at dinner time.

I am now coming up on a year on anastrozole... and I THINK I am finally coming to terms with se's... though maybe it's been this lovely early spring... at any rate, anxiety is finally ratcheting down, pain in joints and muscles much more doable, and am only taking two acetaminophen at bedtime instead of all day long. They seem to help reduce the restless leg syndrome. I hope that A and I are learning to be friends, as my oncologist said I will be on it ther rest of my life, and I'll be 55 in May... aiming for 120! God bless, all... thanks for the encouragement everyone gives!

kim24

Oh Loves-Christmas Barb - feel better please.  My mood from some reason since Friday (four days feeling happy) has been good. No mood swings.  But the lack of sleep kills me.

Pls feel better. Don't make your chlestorol go up.  I am on lipoter for that.

kim

MostlySew

MaryCarol5,

Thanks for the info on sleeping. I seem to be doing better since switching the arimidex to the morning. I did check with the pharmacist to make sure it wouldn't interfere with my thyroid meds, and they said no problem. I love simple fixes which don't involve more drugs. Glad you're doing better with the SE's and that the anxiety is lessening.

LovesChristmas-Barb

Thank you, Kim24! I am feeling a bit better these last few days. My doctor switched me to Femara and I gave myself a five day break before starting it today. I'm hoping that I will do better with this one!

balsie

Does anyone take Ambien  for sleep or a pain pill for the joint pain ( more then asprin) lortab or something like that.....just wondering~

Be Well

Balsie 

Layla2525

spunkyb,looks like a lot of girls take theirs in morng,the Aridx makes me have high anxiety and nervous so I take mine at night b4 bed so if I am nervous I am asleep.

Gingerbrew

Why don't we take these pills forever. Now that I have an AI that I can live with I don't think I would want to stop taking it in 4 1/2 years.

Someone above said her Dr said she would be on her AI the rest of her life. Anyone know why?

I would like to stop worrying about recurrance. If I had a reason to stop worrying about it I would.  I understand that ER+ and PR+ are more likely to recur after 5 years.  It doesn't make sense to me to stop and AI after 5 years just when we would seem to need it most.

Ginger

Anonymous

Welcome spunkyboobster, as you browse these many pages you will find all different answers to your quesitons.  Many of us have had to experiment with the right time to take that little bitty pill.  For me I started taking it at night and it seemed to interfere with my sleep so now I take it first thing in the morning.  Others are the opposite so you will need to see what works for you.  As to the manufacturer, many times it depends on your insurance carrier or it may be the pharmacy you use so it differs.  Mine is by Mylan, others Teva, some have stayed with the brand name.  That's part of the "fun" of this journey, we are all different - no wonder there are several answers to any question posed!   My wish for you is to not have any SE's that you can't subsequently manage to live with.

Balsie, I found tremendous relief from joint pain with exercise and 5000 iu's daily of Vit D3.  I know that may not work for everyone and other meds may be necessary.  When I really need a good nights sleep I pop a Benedryl or Melatonin.  Benedryl however lingers after I wake so I only do that when I need to on the weekend and many people report Melatonin does nothing for them.

luvmygoats

Ginger - I have a fairly new DX.  My MO told me 5 years only on an AI because after 5 years it begins to act like an estrogen rather than an estrogen blocker.  I didn't question this since I haven't even started on it.  But I did think OK what happens in 5 years?  Or maybe there will be a new class of drugs for beyond 5 years OR after 5 years you're home free??

balsie

Ginger, I have a friend who has been on arimidex for 10 years and her dr. has no plans of her getting off of it~so I wonder too about getting off of it.  My dr. did say that he wants me on it for at least 7 years.....which is right Ginger if cancer can come back in 5 years why not stay on it.

 ....just a thought

Balsie 

ruthbru

They still don't have the results of long term trials in....by the time you are there, they will hopefully have more definitive answers. Depending on individual circumstances, doctors are recommending that some women to stay on longer. After 5 years you have to weigh the potential risks and benefits. For me, unless something new comes out in the next 6 months, I probably will be done; because I was only mildly estrogen positive, node negative & although still in the normal range, my bone density is starting to dip. Scary decisions no matter what you do. But at least they will be further along in the research before you have to make those decisions (which I wish they were for me ).

Anonymous

I have 6-month follow-up with MO tomorrow.  Will try and remember to ask him for an explanation since he has always told me only 5 years as well, which leave me only 2 more years.  He is kind of clueless at times and probably will give me a blank stare as he tries to conjure up a response.   Part is my fault because I normally don't have many questions since I have had few SE's so he's not prepared when I do have a question. 

Plils

Hi everyone, been off for a while trying to get my life back in order but I do get on and get updated on all of you.  I have be taking cymbulda for almost a month and I can say that it helps me alot I do still have joint pain but not like it was and I can get down on my knee again and am not as stiff when I get out of a chair, I am really happy with my results I have had, so I hope this will help some of you with your body pain.  Let me know.

Love to all of you,

Pam 

MostlySew

Basie,

I take 1/2 an ambien for sleep whenever I'm so sleep deprived I can no longer function. They work well, and the half is enough for me. I will take a Tylenol before bed if the restless leg or burning feet get going too strong. Hope that helps.



I'd be happier taking something more than 5 years too, hope springs eternal though...

ruthbru

I have an ambien precription for a lower dose tablet (6.25 instead of 10). I do take a pill quite often...I have always been a rotten sleeper so can't blame arimidex.

Plils

Basie,

I am right there with you on the sleep deprived I take a ambien the nights I know I to get up and work the next day or  if I have not sleep good in a few day and then tylonal PM for the other nights, it just seems I get so tired but when I lay down my mind does not stop...

Pam 

marycarol5

Hi, All... Ginger, my doc said I'm on AI forever because they never really concluded if I was stage III or IV, and I had so many positive lymph nodes after chemo... AND it is beginning to look like my family has an unidentified gene for this stuff. He said it is not IF I have a recurrence, but WHEN I have it. After the bc, and two years later colon cancer, then an ovarian scare which resulted in a hysterectomy after we found my grandmother's old medical records and learned she died of ovarian cancer, NOT colon cancer, it is hard to keep the adrenalin going. Then, I was in a car accident that let me have a helicopter ride to the hospital, and a 10 day stay with alot of issues and a three month recovery. All of this in 4 years.

So, now I just refer generically to my 'adventures' and go on about the business of living whatever I have in front of me... was doing great until the anastrozole. But it is starting to turn around or else I am getting used to things. I am a firm believer in distraction (between the anastrozole and the effexor, my newly found ADD provides a ton of distraction... the kids now watch me instead of the other way around!) and love funny books, movies, and young kids who are no end of distracting! Find what you love, and get alot of it...

Question for luvmygoats: do you have any more info on the estrogen blocker becoming more like estrogen? I definitely want to stay on top of that one! Thank you, and God bless!

ginger_mea

I have to say I never have the sleep issues, its the opposite, I am exhausted at night.  I am on the break 3 days now and am wondering when I go back on should I start taking it at night (always did in the a.m.) would that make the anxiety/depression better? but... will it start creating sleeping issues?  Hmmm.... Ginger M.