Femara and "vision disturbances" ?

yellowrose · January 2009

I have been experiencing unusual vision changes and went to see my eye doctor. After tests, etc, she feels that I am possibly having vascular events and has recommended that I see my regular doctor.

I've been reading up on Femara and post-market reports are showing some rare vision disturbances and blurred vision. I haven't been able to find any real data so I decided to ask my fellow BC sisters for any information. What does visual disturbance mean???

I've been having blurred vision that lasts a minute or two over the past 2-3 weeks and two days ago (while I was driving), I experienced this weird "curtain" across the bottom of my left eye only which lasted about 45 seconds to a minute.

Anyway, I'm making an appt for my PCM and ask her if I need to contact my onc. I'd appreciate any good data that you might have that I could share with my dr.

TenderIsOurMight · January 2009

Hi yellowrose,

I've been on Femera almost a year, preceded by Arimidex x five. I read too that Femara may be associated with vision disturbances (don't know specifics). I have noticed some intermittent short term blurring (brief, corrects, and often when I've done a lot of reading). I also have significant dizziness on it, the kind where I get some flashing lights with postural changes.

Now I believe I recently saw a line or two about Femara and the heart. I don't know the specifics, just understood the experts are watching this more closely. I mention this because heart and brain connections are not uncommon.

A curtain across the vision field does warrant a good work up. Retinal detachment I think can give something similar, but I'd expect that to be persistent.

Is your eye doctor an opthamologist (MD) rather than optometrist? I'd think the former would be optimum, and I believe some even specialize in vascular eye disorders.

Are you on an COX inhibitor: Celebrex or the like? when taking Celebrex in the past I did have a specific vascular ocular event: scared me so I stopped taking it. Just a point of information.

Please let us know how your evaluation goes. Femera and all AI's are just know coming into some "longer" years of use for adverse effect statistics accumulation.

My best to you,

Tender

Member_of_the_Club · January 2009

I have had a retinal detachment and it does produce a curtain covering the vision but the curtain doesn't come and go. Once the retina detaches it cannot reattach on its own. What you are experiencing sounds unusual to me and I agree warrants a workup. The idea of a vascular event makes some sense to me as the veins in the retina are particularly vulnerable to bleeding if something is off.

Tender I have the sometimes brief blurring thing when I read and I have attributed it to the cataracts I have, that are being monitored. Now I'm wondering if it is hormonal. I don't have any dizziness. And I get tons of flashing lights, in part because I have vitreous detachment in both eyes and thin retina. I assume since you are well aware of the possibility of a retinal detachment that you have had your eyes checked.

I once had an ocular migraine and it was terrifying but it lasted about 20 to 30 minutes, which i understand is standard. The two to three minute thing yellowrose is experiencing sounds different.

yellowrose · January 2009

My dr is an optometrist (OD) but I have been her patient for 13 years so she is really diligent about this sudden change.

The only medication I take is Femara.

I am waiting for an appt but if the curtain thing happens again, my eye doctor said to go to the emergency room as it can also be a sign of a TIA. That scared me as I do have borderline high BP. No meds for it though.

TenderIsOurMight · January 2009

MOTC, thanks for your post and words of concern. You and I sound somewhat similar in eye problems. I do have full retinal exams periodically, given intermittant ocular problems. Guess I should soon, but will be need to find a new opthomologist. Ocular migranes are wild: zig zags, lights, focus on one side, and for me a headache followed by some corneal bleed. I think my blood pressure must have been high or other. Yikes!

Yellowrose,

To check the eye fully, you all ready probably know, the pupil must be dialated by drops and for a retinal exam, a special bright light tool used to view it. It's not the most pleasant imho. T.

yellowrose · January 2009

Tender, my dilation appointment is Monday but she has already said that she is doing it only as a precaution and wants me to followup with my PCM.

She mentioned occular migraines but due to the fact that everything is so brief, she is leaning more toward vascular. I do have a vast migraine history but they are the nausea, photophobia and vomiting kind and again, they last hours.

I'll update later.

Member_of_the_Club · January 2009

Tender, do you have cataracts? My understanding is that tamoxifen can really accelerate them, which seems to be happening with me, but as I recall you have always been an AI person. So I'm wondering if AIs are linked with cataracts as well. This is something I should be aware of when I make the switch.

homeagain · January 2009

I have been thru the whole 'vision disturbance thing' tho for a different medical issue....about a year before my BC was 'discovered'. And I have to tell you, you got to and then go again, around a very large block to rule a whole slew of potential issues out!

I was lucky? In that I'd found a neuro-opthamologist not too far from me. I had the whole cardiac test menu done, and a bunch of opth tests that most folks would never encounter in their lifetimes... Conclusion in my case? Was an occasional occiptial [painless] migraine! DUH? Key to you getting a diagnosis is to LOOK in a mirror when it's happening - if your pupils are dilated? Go see your optomotrist or Opthamologist or whoever to actually WITNESS IT! Key is that seeing is believeing in such cases... I can't understate this, but at the same time... Do NOT PANIC! The docs ultimately did nothing for this 'vision issue', as it sort of dissapated....and now only happens about once every two months-annoying at the worst, but the UH-OH! Button does try to set off a Red Alert! I find it happens when I get too tired and try to do too much. Sometimes the intro of new meds can inspire new 'events'...

On the other hand? IF it gets more frequent and worse? Call your docs rite away! I bet that they will say to you that should you have an 'event' and can get there...they will fit you in!

For me, cataracts were not the issue, as I'd had surgeries for both eyes about 10+ years before. Key here is to NOT PANIC! Just ask questions and seek answers! And do not be pushed off into a corner..... This vision thing is a scary one for sure? But if you are like me, it WILL go away! With that have some comfort. Hope always!

yellowrose · January 2009

Just an update on the "vision disturbances" Had a consult with my onc and she is concerned about the blurring and the headaches (that I mentioned on another thread). The headaches are now pretty much a daily occurrence and I am even waking up at night and in the morning due to them.

She has given me a scrip for a sleep aid (that didn't do a thing for me last night) and has scheduled me for a head and neck CT to see if she can see any issues. While I really would like to find the cause of what's going on, I am hopeful that it is something very simple and easy to fix.. Test is Thursday so hopefully I will know something by Friday.

Blundin2005 · January 2009

Hi ladies all,

I read this thread with interest because my eyes seem more dry since Arimidex (3 yrs 2 months and counting). I rub them frequently--probably not the best thing. My eye exams reveal no significant change in vision over this time. I was going to try contact lens, but decided to stay with the glasses because of the dry eye.

About optical migraines ... I had these many years ago. They are very scary. I was told they were stressed induced and would resolve as I dealt better with the stress. They were right about it. It helped too that I worked for doctors at that time.

Also, my DH spent the last two years resolving vision problems stemming from a detached retina (a consequence too of being 69 y.o. but thinks he's 30). He had 1) laser to reattach, then 2) a vitrectomy that cleared the floaters and blood that was not reabsorbed by the body, then 3) cataract/corrective lens surgery that was secondary and expected to follow the vitrectomy, then 4) laser to open the 'vail' left by the vitrectomy. Today he is very grateful to his doctor and to have almost perfect vision in that eye.

The doctors continue to advise him to drink a lot of water to help keep the pressure in the eyes down as well as the blood pressure, and to help keep the veins and arteries supple.

About the stress....it happens that I like others here still have difficulty when checkup time comes around along with the battery of exams--or the world around me just plain gets too full to take any more in--like my second cancer surgery in within three years this time in the bladder (all is well and no it's not mets thank God). Besides using Voltaren cream for my very achy joints to help me sleep, I very occasionally take an herb in pill form of Valariana. It's been very helpful. My body seems to react strongly to any medicine so I try to avoid taking too much. This herb helped me to find a very nice, quiet, continuous and restful sleep. Just a thought to share to others here. Bianco spino (Hawthorn) too is good to calm anxiety and is good for the heart I'm told.

Hope that you all feel better soon.

meadows4 · January 2009

I took Arimidex for almost 10 months. I thought I was having no side effects. But, then I had a posterior vitreous detachment...PVD....which, granted, is not all that serious and is common in older people. But, I researched it and found studies that concluded that the lack of estrogen in post-menopausal women made it more common in women. Although PVD is relatively common in this age group, I decided that I did not want any more problems to occur with my eyes that might be traced to lack of estrogen so I stopped taking arimidex.

PVD is manifested by bright lights in the peripheral vision.

But, given my experience, and now reading the posts above, I am more concerned than ever that these AI's can contribute to eye problems.

Member_of_the_Club · January 2009

Whoa, PVds are inevitable with aging and not particularly dangerous. Everyone gets them eventually. I have them going in both eyes, younger than most people because of extreme myopia. I don't know what stage your bc was but if it was at all invasive I'm not sure its wise to forgo an AI because of PVDs. I assume your doctor didn't recommend it.

I have had almost every eye issue imaginable, and I really can't attribute them to cancer meds. My detached retina was 17 years ago, long before bc. I think we all have to accept that there are inevitable signs of aging and not everything is cancer-related. Even if it is cancer-related, it isn't cancer.

poppet · July 2009

Hello Yellowrose,

I was taking Femara for 3 months and developed some numbing and dizziness in my face and arms and legs. My doctor recommended that I stop taking them for 1 month which I did and the symptoms subsided. I then took them again for 2 months but developed eye problems. My doctor told me to go off the Femara for another 3 weeks but the eye symptoms got worse. I have now been diagnosed with Vitreous Detatchment. I have 20/20 vision and am 61 in November. I also have developed a pain in the back left side of my head at the top of my spinal column. I have had an MRI scan which has come back clear but my doctor seems content to let it go and not do any further tests I am so frustrated as any medication I take only alleviates the pain for a few hours but it always returns. I have tried to find out what it could be myself and I came across the condition known as Fybromyalgia. I suggested this to my doctor but he didn't seem interested in persuing this diagnosis. I have started taking Arimidex for the past week but am taking it every second day. I found with Femara that any previous injury I had had developed pain that I had not previously had. I wonder if it affects week spots in the body and accelerates the degeneration process. Doctors don't seem to know much I have had more joy talking about my problems with the chemist. Sleep is also another luxury which I have been deprived of.

I am new so any helpful advise would be appreciated.

Poppet

Member_of_the_Club · July 2009

Vitreous detachment is a normal part of the aging process. I developed it at a much younger age than you. The other symptoms do sound hormonal, including what may be a migraine headache. I hope you do better with arimidex.

JoanofArdmore · July 2009

Hello, my dear bc sisters!

Well not really.But I came to read about Dorothy Hamill's BC.I like 'er, but somehow I know she is NOT a chemie.(Not that I wish it on her.)

Anyone know if she is on AI?

But--I've been off Femara for..2 years+ now?

I feel the SEs will never leave me.Again, my rant--I stayed on it too long.

Again , my Ancient Mariner rant: Do not stay on the drug long enough so you cant lose Ses during "vacation" from Femara.

Do you remember my story?

My onc started giving me vacations at about 3 years on.The horrible SEs -joint pain,dizziness, eye changes, general weakness, I was FRAIL,I later realized.(Frail being loss of muscle and strength,fatigue, susceptibility to colds and disease,becoming tired early,etc,)

cognative difficulties, lots of other mean nasty stuff I discussed here aplenty, back in the day.

So on a 2 or 3 week vacation, the SEs would fade, some left.

Back on Femara, they would return w/in a week or 2.And grow stronger.

I finally realized my quality of life was, like, ZERO.

And quit the drug.

Too late!

I couldnt recover myself.

OMG here I aM 2, 3 years off (who remembers??)(who rtemembers ANYTHING??)

I will be 68 in the fall.ONLY 68,

And I'm, truely, like a lady in her 80s.

Frail,

Wracked with arthritis.It is in my hands, too, now.

Lack of cognative ability.

I CAN sleep.Melatonin does it for me, plus a sleep mask-sort of soft goggles that lets your eyes do REM -(-called 40 Blinks) , cool room, light blocked from windows, white noise machine on--plus-just LIVING a day exhausts me.Pain in my knees & hips wakes me, but I crawl out & pee, fall into lalaland again.

I worked on Obama Rapid Response all through the campaign.

We did it!

We (my Obama group) got invites to the inauguration.

Everyone went, & met f2f, and had a total ball.

I never considered it.

I cant even imagine getting up and down steps to a train.I get exhausted going to Whole Foods!

So here I am, a so-far bc survivor of 6 years, who has totally lost my life..to Femara.To the AIs.

NEW drugs no one knows about.

Everyone I complain to....wants info from ME:

.My onc.

The druggist.

The drug COMPANIES.

BC newsletters.

I research.Thank GOD for the computer.

I understand now that AIs..(duh) remove estrogen from the body.BUT there is a point of age at which, when estrogen is lost, the woman can never make enough back to lead a normal life for a person of HER AGE!

We look 50, feel 90.

WTF?? This is beating cancer?

It is HELL to be a 90YO.And my hair is still very darkI dont look 90..People think I'm a nut!

My usual rant--all the SEs of AIs are estrogen depletion symptoms!!ALL!

From bad arthritis, to fatigue, to eye problems ("this is a complaint of older women" Right.And WE are turned, too quickly, into OLD WOMEN!)

I can't hear well, either, or smell, or taste food.

For estrogen to be depleted so fast, as opposed to gradually, over a period of many years as in natural life--is horrible.Very bad.

And no medicos, drug cos. drug makers have addressed this at all. NO ONE KNOWS IT.Except us, who wander around thinking "we are getting older", or that it will get better when we're done the drug.

OK, rant over.

I recommend an internist who specializes in gerentology. SHE will understand, and know the best way to treat our SEs.

(I'm too exhausted to go.I FINALLY made appointment with eye doc..floaters are awful, taking over.And eyes grainy.

Yes, Marilyn, I'm rubbing them.I'm delighted to hear about DH!There is hope--(provided someone can actually manage to go get medical tx! )

Love to you all.It's like coming home, being here.

Bless you.

j

TenderIsOurMight · July 2009

Dear Joan of Ardmore,

It is SO gracious of you to pop back in and let us know how you are. We all remember well your wonderful, funny posts on an issue of much importance-namely the AIs' resulting in a dearth of estrogen systemically.

While I didn't have the pleasure of many years of interaction with you, I knew in my heart that my SE's were very similar to the severity you described and in fact researched low estrogen and brain function in detail. There's quite a bit of literature out there.

While you went on your way, following your heart that you best do without the ramifications of low estrogen, I stayed the course largely out of fear of recurrence in the ER+ state: now on year six of an AI.

I'm wondering if you might share more about your inroads to the pharmas, the oncologists etc, who are curious about the depth of impact of low estrogen. I don't see much written on this in main stream journals (brain, heart, joints, aging effect, asthenia or fatigue, dementia like effect) recognizing the level of disability the AI's can impose. I do see calls for continued prescription of them now, even for as far out from diagnosis as up to 15 years in light of chronic low level risk of ER+ recurrence.

Thank you for returning to say hello and let us know how you fare. I hear you warning. Regrettably, we have lost too many sisters and brothers over the years from breast cancer, even those ER+, so of course, many of us continue to take any medicine which through research is felt to help.

My best to you,

Tender

JoanofArdmore · July 2009

Hi Tender,

I think you are asking me who is collecting info from me?

I think you have covered my sources, and for more, just google "menopoause-(any of the SEs) .

Also, if you Google Femara side effects, there is at least 1 website violently devoted to millions of women who are/have suffered horrible SEs, .Most have quit.

Also, there is a group called Breast Cancer Action, who is very opposed to we bc girls being used as a cash cow for big pharma, because of fear of recurrance. BCA is a kind of "radical " group--NOT opposing conventional tx for bc, but opposing big pharma making fortunes from us, and, of course, creating drugs and reasons why we should take them.Big pharma is a totally rich from us too!) and powerful lobby ,( now holding the health care bill down)

BCA (and we, the members), is responsible for making Yoplait remove the RBST(bovine growth hormone) from their pink ribbon lids yogurt!

Eating yogurt and dairy products containing RBS is probably LOTS more bc-causing than not taking AI!!

But big pharma makes sure no one knows this.Women eat unorganic dairy freely, and FEED IT TO THEIR DAUGHTERS!

Gah!

Do check out Breat Cancer Action (breastcanceraction.org)

As far as who is picking my brain, the Femara SEs website requests our stories.

I didnt go down easy.I called Pfizer , when I was on their AI,aromasin, and kept calling, requesting "a doctor".(HAH! No such on their huge staff!)and finally a pharmacist.

When I said I was startting a class-A suit --untrue, but boy! did it get results!-when I said that they put me througfh to Pharmacy!

Pharmacy gave me the old 'menopausal SEs runaround.

Duh.Yes, no sh!t Sherlock.I was in natural menopause, I know it all from the last movie.

But next, Pfizer began to request that I teach them.They sent me requests for YEARS!

I had filled out ther first request, listing all my Ses, and reporting EVERYTHING thaty happened to me on Aromasin.I switched to Femara when I learned that Pfizer knows NOTHING about possible harmful SEs, and cares less.

So I refused to communicate w/them further.

My own pharmacist at Rite Aid monitoirs my progress through sufferingland.

As w/Pfizer, I asked HIM, he wound up picking my brain so he can reply to other patients.I dont mind.He actually cares.

BCA has a very complete questionare on AIs (they oppose them for reasons i gave--big pharma creating 'need" for expensive drugs, and now making the ":need" for them longer & longer.Lifetime use! They've got a real cash cow in bc!

BCA also opposed generic use of AIs.Every case does not need all.Indescrimanateprescribing of AIs isnt right! Some oncs are afraid not to use them.Some, like mine, are in bed w/big pharma.

(

I see by MY expedrience, that I'm , what my onc calls "very estrogen-sensitive".When I was menopausal, I suffered so horribly from the SEs-disposition changes, insomnia, formication, weight gain, sexual changes), that my gyno put me on Prempro.Within a few days I was sleeping like a baby again,and the skin on my back no longer felt it was crawling..

The does of Prempro was the smallest.It didnt cure my loss of libido, or my arthritis, although it DID stop its progress.

It was as good as it got, for me.

I , nervous about HRT, quit it for a bit.My SEs came roaring back.I compromised by having my doc prescribe the smallest made doses of es , and progest, seperately. I took this, able to sleep , & thus bfunction, for 12 years, until I was dx.

At whivch time, of course I quit my HRT cold.

I realized, much later when the AI Ses started to be really bad, that quitting HRT at 63 WAS ALL THE HT I NEEDED!

Instead my onc took m e down to a score of *****9****! estradiol! 9!! A single digit #!!.(Normal score in hundreds)

No wonder I'm sick!

Edge, the saintly researcher who gives us pro-bono advice and opinions, has found that grapefruit is highly estrogenic.And that the results of eating it are long-lasting.

He has "forbidden" we ES+ women to eat it.

But me--I'm seriously considering taking up my old habit of peeling a ruby red & eating it like an orange.(I did this all through mylife, through TX and taking of AI.!)THEN the discovery.

Now I'm totally conditioned to shun the gorgeous ruby-reds.Can I manage to overcome it?

My main objection to AI, let me be clear, is that it should be age-appropreiately prescribed.Younger women desperately need to curtail their estrogen production.Early menopause women in their 50scan probably use AI.But women in their 60s? Hey--if we actually produce significant estrogen, which most of us cant, then good luck to us.

We need drug companies and oncs who take this into account.And we dont have em.One size does NOT fit all!

PLUS, I have friends here, both older and younger, who, when the SEs kicked in said "No WAAY!" and quit AI.And are perfectly fine.

Quality of life is WHAT IT IS ALL ABOUT! I learned this too late.Brainwashed and driven by terror and a hope to stay alive, until I finally realize that being dead...isnt so bad compaired to continuous suffering and incapacitation. (NOT SUICIDAL! And I've also learned to despise the way oncs stone us or "antidepress" us to shut us up about the suffering!)

Long post.

Will quit now.This page--the AI section, it wouldnt be so terrible if BCO made the print large enough for we chemically-produced old ladies to be able to see.

Love, j

JoanofArdmore · July 2009

I have no IDEA what all this "adressadress" stuff is.New feature?Anyone know?

Print is tolo tiny for me to edit--sorry.(I think you know ADRESS ADRESS isnt part of my post!)

marijen · September 2017

Bump

Please notice, one comment above. The point of no return, estrogen is cut off for so lng we become frail and can never replenish the estrogen enough and may look 50 but feel 90. See JoanofArdmore, last seen 2009. She has a good point. Women in their 60s have less estrogen to lose. Then why is it women in their 60s are the biggest group to be dx'd with hormone positive cancer

ChiSandy · September 2017

Because we’ve lived that long and had a longer exposure to estrogen over our lives than have the young’uns. The effects of estrogen are cumulative. And we still make estrogen elsewhere in our bodies.

marijen · September 2017

They say a tumor can take up to twenty years to grow.

Femara and "vision disturbances" ?

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