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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: tamoxifen vision problems after only 2-3 months

Topic: tamoxifen vision problems after only 2-3 months

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Nov 27, 2009 05:56PM

jer wrote:

Has anyone had vision problems with tamoxifen after only 2-3 months. Aside from the mood swings, hot flashes, depression and all I started having streaks in my right eye and blurred vision in both eyes. The oncologist changed my meds but does not think it is the tamoxifen. It has improved alot without the tamoxifen but not perfect. Now i am supposed to start arimidex and it sounds bad too. i feel stupid because the doctor was upset with me but the blurred vision was getting really bad. This whole cancer thing is just the pits and I am supposed to be one of the "lucky ones" with early detection and all. I am not feeling so lucky right now. thanks for the vent though.

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Nov 27, 2009 06:13PM kmmd wrote:

I'm finishing a 2 month hiatus from Tamox.  Ended up legally blind in one eye and vision so bad in both I couldn't drive.  My Onc didn't think it was the tamox, but took me off anyway.  Same thing, blurred vision so bad I couldn't see the TV from across the room, I was miserable. Turned out, my eyes were so dry I had multiple (and I mean multiple and lots) of corneal abrasions and tears.  My eyes were so dry every time I blinked I tore my cornea.  MUCH better off of the tamox.  I'm going back on soon, but we dont' know what to do if it recurs.   I talked to one othe woman who had such dry eyes she went off of tamox, and restarted at 10 mg twice daily instead of 20 once a day.  I'm going to try that to see if it helps.  Good luck. The only thing I can tell you is don't let anyone make you feel badly, we are not the crazy ones.

P.S. Don't feel very luck either. 

www.youtube.com/watch?v=vrpJD2... Keep breathing is my new motto. Kate

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Nov 27, 2009 06:19PM idaho wrote:

How dare your doctor get upset with you... I would be changing docs!   I have noticed a change in my vision with tamoxifen also....  as have many other women.  The docs don't think it is caused by the tamox because there haven't been any studies done for that YET.  They used to say it didn't cause muscle aches either until enough women complained of it and they finally did a study....  Wish the docs would wake up and realize every woman is different and meds affect every woman in different ways. . Peace and health to you. Tami

There's no place like home......There's no place like home

Dx 2/1/2009, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 27, 2009 06:23PM awb wrote:

my vison decreased over time, but the optometrist said it was due to aging, not the tamoxifen. Said the risk with tamox is cataracts, but it is very low. I took it for 5 years, now take Evista

Anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Nov 27, 2009 06:42PM sweatyspice wrote:

Google is your friend!  I was looking into this last week - isn't there an insert that comes with the drug that has the side effects info printed on it?  I haven't started taking the drug yet, but I thought I'd investigate and I found some sort of official warning thing on the web, it seemed like it came in the packaging.  Of course now I can't find it.  But I did find these:

http://www.agingeye.net/visionbasics/eye&meds.php 

Tamoxifen (Nolvadex)
Tamoxifen is a drug used in the treatment of breast cancer. Ocular side effects consist of crystalline retinopathy, corneal deposits, and optic neuritis. Ocular side effects to tamoxifen are relatively rare, with the reported incidence in the literature varying between 0.9% and 12%. There is evidence of retinal nerve fiber degeneration. Cessation of treatment usually prevents further deterioration but may not result in visual recovery.

http://www.drugs.com/pro/tamoxifen.html

Effects on the Eye

Ocular disturbances, including corneal changes, decrement in color vision perception, retinal vein thrombosis, and retinopathy have been reported in patients receiving Tamoxifen. An increased incidence of cataracts and the need for cataract surgery have been reported in patients receiving Tamoxifen.

In the NSABP P-1 trial, an increased risk of borderline significance of developing cataracts among those women without cataracts at baseline (540-Tamoxifen; 483-placebo; RR = 1.13, 95% CI: 1.00 to 1.28) was observed. Among these same women, Tamoxifen was associated with an increased risk of having cataract surgery (101-Tamoxifen; 63-placebo; RR = 1.62, 95% CI 1.18 to 2.22) (see Table 3 in CLINICAL PHARMACOLOGY). Among all women on the trial (with or without cataracts at baseline), Tamoxifen was associated with an increased risk of having cataract surgery (201-Tamoxifen; 129-placebo; RR = 1.58, 95% CI 1.26 to 1.97). Eye examinations were not required during the study. No other conclusions regarding non-cataract ophthalmic events can be made.

http://jco.ascopubs.org/cgi/content/abstract/14/3/1018

Tamoxifen-associated eye disease. A review

SG Nayfield and MB Gorin
Chemoprevention Branch, National Cancer Institute, Bethesda, MD, 20892, USA.

PURPOSE: The oral antiestrogen tamoxifen has demonstrated efficacy in the treatment of metastatic breast cancer and as adjuvant therapy in early-stage disease. Clinical trials of tamoxifen in chemoprevention of breast cancer among high-risk women have focused attention on potential adverse effects of long-term tamoxifen use, including the possibility of ocular toxicity. This review evaluates the published case reports, clinical series, and clinical trial data on ocular toxicities attributed to tamoxifen. Clinical issues of surveillance, differential diagnosis, and management of tamoxifen-related eye disease are discussed. DESIGN: National Library of Medicine online bibliographic services were used to identify case reports and clinical studies of ocular adverse effects that occurred in patients receiving tamoxifen published through the fall of 1994. The medical literature relevant to issues raised by the reports and studies was similarly identified and reviewed. RESULTS: Case reports and case series identify crystalline retinal deposits, macular edema, and corneal changes as potential tamoxifen ocular toxicities. Extensive retinal lesions and macular edema with visual impairment have been reported in a few patients receiving high-dose tamoxifen. Less extensive retinal changes may occur in patients receiving low doses for long periods, and isolated retinal crystals may be observed in patients without visual symptoms. CONCLUSION: Ocular toxicity is uncommon in the current clinical setting of long-term, low-dose tamoxifen use. Physicians should be aware of the potential for ocular toxicity among patients receiving the drug and should assure appropriate surveillance and prompt evaluation of visual complaints.

Dx 8/2009, DCIS, Stage 0, Grade 3, ER+/PR+
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Nov 27, 2009 07:32PM GloDee wrote:

Hello,

This is my first visit to the site since June/July and I saw your post.  I just had a vision check last week because I was having so much vision problems.  My prior exam was in February 2009, one month before I got a BC dx.  I have been on Arimidex since June.  My vision had decreased "4 steps" my optomitrist said, but thought it was "age" not rx.  I haven't had a decrease in several years and my glasses were for reading only.  Now I can hardly see the tv barely 10 feet away and colors are a problem.  On top of that he also said I had early macular degeneration in one eye and should start eating spinach, broccoli and greens at least 3xs a week!  Now tell me that is not from the rx!  I will see my oncologist in two weeks, so will get a clearer picture from him hopefully.  I had googled vision problems and arimidex, but did not see a lot of connections.

GS

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Nov 27, 2009 07:35PM Member_of_the_Club wrote:

I was thinking dry eyes before I even got to the next post.  Your eyes need lubrication to see and its quite possible tamoxifen has affected that.  You should try eye drops and see if that helps.  The streaks are more of a concern only because you have to make sure you haven't developed a tear in the retina.  You should see an ophthalmologist about all these issues, not an oncologist.  Very important.

 My ophthalmologist told me that retinal side effects from tamoxifen are so rare she hasn't ever seen it in her practice.  Cataracts are more of an issue (I've developed some) but still rare. 

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Nov 27, 2009 08:03PM jer wrote:

i should have mentioned i went to see my eye doctor before i brought this up to my oncologist and he couldn't find anything. i am afraid to start the arimidex because i already have arthritis problems. i kind of feel overwhelmed and like a whiner right now and just felt like the oncologist was frustrated with me. i don't want a recurrence so i have to start the arimidex soon but GloDee mentioned eye problems on that for her. I would have liked a more supportive doctor but HMOs have limited choices. thanks all. it is nice just not to feel alone. this has been my first post since dx etc and trying to sort things out.

Dx 6/29/2009, DCIS, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+
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Nov 28, 2009 11:35AM kayakgirl wrote:

I am 56 and I have developed cataracts in both eyes and dry eyes. I had the streaks in my visual field about 3 months after starting Tamoxifen and the eye doctor said it was peripheral vitreous detachment (PVD). Luckily the PVD subsided after a few months. I had none of these problems in my eyes during my eye exam  just before my Breast Cancer dx. I been told that the cataract are due to the Tamoxifen and  the high dose steroids I got during chemo and the other problems due to chemo, Tamoxifen, and being abruptly thrown into menopause by the tx. But it is good to be alive and the Tamoxifen decreases my personal risk about 10%.So I will live with the fact that in the near future I will need cataract surgery. 

I tried many different types of wetting eye drops and the one that works best for me is Optive. I put the drops in my eyes from anywhere from 3-4 times a day to every two hours depending  upon my dry eyes.

Dx 06/2008, ILC 3.8 cm, Stage 2A, ER pos/PR pos, Her2 -,SNB with isolated tumor cell, 07/08 bilateral mastectomy with reconstruction and port inserted, 4 cycles of chemo TC x2 then AC x2 from 08/27-10/29/08, started on Tamoxifen

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Nov 28, 2009 11:42AM Merilee wrote:

The last day i was on Tamoxifen I had lost the hearing in my left ear and every thing looked orange and blurry.  Vision has improved over the past 3 months with eye vitamins but still deaf in the left ear. Nasty stuff for some of us, others I guess are just fine with it.

breastcancerbeast.blogspot.com & http://downsyduderescueranch.blogspot.com

Dx 4/4/2011, ILC, 1cm, Stage I, 0/9 nodes, ER+/PR+, HER2-
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Nov 28, 2009 11:46AM Springtime wrote:

I have had issues with blurriness in one eye, like a "floater" that sometimes is persistent and won't go away, even with blinking. However, other times it's not there. I thought it might be cataracts, so went to eye doc, and he said no. 

I am not on a break from Tamox b/c I am having surgery next week (I go off 10 days prior and after, to minimize risk of blood clots). It may not be as bad right now, and I am going to keep track of this. I think it is the Tamox. I have been on it 8 months. 

Psalm 91: 14-16 "Because she loves me," says the LORD, "I will rescue her; I will protect her, for she acknowledges my name. She will call upon me, and I will answer her; I will be with her in trouble, I will deliver her and honor her. W long life...

Dx 7/10/2008, IDC, Stage II, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 28, 2009 11:49AM jancie wrote:

I am so glad I found this thread.  I thought I was going nuts!  I noticed about 2 weeks ago that I could barely read the guide on the dishnetwork - it was getting very blurry and I have been on tamoxifen for 1.5 months now.  I know the chemo created vision problems for me so I was figuring that my eyes were just getting worse due to the chemo - I had no idea that it could be from the tamoxifen.

I will definately be going to have my eyes checked out in the next week.

Never Alone - My TaTa Sisters are always with me!

Dx 12/30/2008, IDC, 4cm, Stage IIb, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Nov 28, 2009 05:07PM, edited Nov 28, 2009 05:30PM by jer

This Post was deleted by jer.
Dx 6/29/2009, DCIS, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+
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Nov 28, 2009 05:17PM awb wrote:

I did develop "floaters", but the optometrist said that was from getting older too, not the tamox. Said "floaters" are extremely common after age 40. I do notice my eyes are much drier (even with the evista as well).

anne

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Nov 28, 2009 05:21PM sunandsandgirl wrote:

I have had really dry eyes since taking Tamoxifen in February.  I have been using optive to keep them lubricated.  I probably should try to use it more regularly to see if this helps with the visual changes.

sunandsandgirl 

Dx 12/30/2008, IDC, <1cm, Stage Ib, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Nov 29, 2009 05:54AM Member_of_the_Club wrote:

Floaters are completely a natural part of aging, as are PVDs (the PVDs usually cause the floaters).  Also, I developed the need for reading glasses a few months after starting tamoxifen, but it was just a coincidence.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Nov 29, 2009 08:25AM CatbirdC wrote:

Hi All Dry Eye People  :o) 

I developed dry eyes within 3 weeks of starting Tamoxifen.  My daughter thought I had pink eyebut they were just that irritated from being dry.  The doctor prescribed articificial tears and thathelped, but he also told me to take Omega 3 fish oil capsules.  My eye doctor also said thefish oil caps helps his patients.

I went to Walmart and got 1,000 mg of the coated ones (so you don't get that yuk fish taste) and it only was $4 for the bottle.  Oh What A Difference that made.  The drops help but the fish oil brought the real tears back to my eyes.

Hope this helps at least a few of you. 

CatbirdC

CatbirdC

Dx 5/19/2009, DCIS, 0/3 nodes, ER+/PR+, HER2-
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Nov 29, 2009 08:43AM elimar wrote:

Just started Tamox. two weeks ago, so avidly reading the posts here.  I have the typical middle-aged vision requiring only low-mag. OTC reading glasses right now.  Hope the Tamox. doesn't worsen that too much.  Now don't boo me off for my next statement...My eyes have gotten a little worse having to do so much online reading about B/C over the last six months.  I noticed eye strain and blurry vision just due to over-use.   Obviously this doesn't apply to floaters or cataracts, but it does account for some dry eye and muscle strain blurriness.  I notice I can "improve" if I am at the computer only sparingly for a few days.  I'm just sayin', and not trying to override anyone who knows this is not a factor in their case.

Dx 6/24/2009, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Nov 29, 2009 10:45AM CatbirdC wrote:

El~~ 

I agree that eye strain can cause many problems too.  As a matter of fact I read a lot and atfirst I thought my dry eyes were caused by too much reading.  You may have no eye problems at all on the Big T.....that's just one of so many SE's we can get as I'm sure you've read by now.  :o)

Good Luck with the Big T.  Most of us are weathering the storm.

CatbirdC

CatbirdC

Dx 5/19/2009, DCIS, 0/3 nodes, ER+/PR+, HER2-
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Nov 29, 2009 12:07PM kmmd wrote:

catbird, the omega 3 is a good tip, thanks (I think I've tried about every eye drop made).  Eyes are better after being off tamox for a bit, I'm going back on soon and we're hoping that with the break I'll tolerate it this time

www.youtube.com/watch?v=vrpJD2... Keep breathing is my new motto. Kate

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Nov 29, 2009 02:27PM Springtime wrote:

I take a lot of fish oil (4 caps a day, when not getting ready for surgery that is) and I wonder if that is why I don't have dry eye. Interesting.

Psalm 91: 14-16 "Because she loves me," says the LORD, "I will rescue her; I will protect her, for she acknowledges my name. She will call upon me, and I will answer her; I will be with her in trouble, I will deliver her and honor her. W long life...

Dx 7/10/2008, IDC, Stage II, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 29, 2009 03:32PM jancie wrote:

Elimar - I have been wearing reading glasses for the past 8 years.  I get my eyes checked every 2 years and have to increase the magnification each time.

While undergoing chemo, I had a lot of vision problems.  My eyes would get tired and blurry so I could only stay on the computer for about 20 minutes at a time and then go do something else for a couple of hours.  I used to be on the computer for work for 8-10 hours a day without any problem.

However, my eyes have really gotten worse since starting Tamoxifen.  Coincidence?  Maybe for some because it seems the age of 40 is when your eyesight starts going and if you get BC in your early 40's - well I can see where they blame your age instead of the drug.

On the other hand I am 48 years old so even though my eyes have gotten steadily worse over the years (at a very slow pace), they are getting worse at a very fast pace right now.

My goal tomorrow is to call and get an eye exam.  I used to have 20/15 vision.  Then it became a problem with focusing up close (hence the reading glasses) but  now my vision is impaired at a distance whereas before I had great vision at far distances.

Never Alone - My TaTa Sisters are always with me!

Dx 12/30/2008, IDC, 4cm, Stage IIb, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Dec 2, 2009 08:57PM jancie wrote:

I just thought I would post the results of my eye exam this morning since I am not only having problems with vision far away now that I didn't have before but my close focus abilities have diminished also.

First off Sweatyspice - thanks for the information.  I printed it out and gave it to the optomologist today.  He was going to give it back to me and I told him "Keep it, it is useful information"  Because of what you posted, he ran some additional test that normally he hasn't done in the past.

My vision problem he said is related to the tamoxifen.  What is happening is that my eyes are not dilating like they should.  The medication is causing my pupils to dialate so when I get into bright light, my pupils should constrict and get smaller but they don't.  That is why I have a very difficult time in any type of bright light or flourescent type lighting.

So just wanted to get that information out there.  I never really look at my pupils to begin with but now I can just imagine being pulled over by the cops, them looking at my eyes and thinking I am on some illegal narcotics Laughing

Never Alone - My TaTa Sisters are always with me!

Dx 12/30/2008, IDC, 4cm, Stage IIb, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Dec 3, 2009 08:24AM Member_of_the_Club wrote:

Did you see a medical doctor (ophthalmologist) or an optometrist?  I ask because I have never heard of tamoxifen affecting the ability of your eyes to dilate, I can't imagine how that would happen.  I know head injuries can cause this problem, and I think you might want to run this by a neurologist to make sure it isn't something else.  I don't want to alarm you, I doubt it is.  But still, this is a very odd thing.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Dec 3, 2009 08:51AM jancie wrote:

Member of The Club - I saw an optometrist, the same guy I have been seeing for the last 8 years so he has a complete history of my eyes.

Sometimes I have a hard time expressing myself (dang that chemo brain).  In any case, no my pupils aren't dilated like you would see from a head injury.  My pupils are just dialated "a little bit more" than they were the last time I saw him.  He didn't "dilate" my eyes like you think when you see an eye doctor.  My pupils are larger than what is normal for "me" and they don't constrict back in bright light to the degree they should (what is considered normal).  That is one reason I am having quite a bit of trouble with bright lights and being able to focus when I am around bright lights.  

Believe me, I came out of there with a massive headache because he kept shining bright lights into my eyes to watch my pupils as they should have gotten bigger or smaller depending on what he was doing.

Never Alone - My TaTa Sisters are always with me!

Dx 12/30/2008, IDC, 4cm, Stage IIb, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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May 3, 2011 01:22PM INDAJRNY wrote:

Completely agree with the Vision Problems associated with taking Tamoxifen. I took the drug for 11 months and have discontinued it as of last month. After just a few months, my vision was blurred in only one eye. It got worse as I continued to take it; my doctor said it was not the drug. I disagreed. My eye doctor mumbled something about my eye muscle being weak, but would not clearly say it was from the Tamoxifen. As of this month, I am off the Tamoxifen and now taking Lupron. I hope this drug does not jump on the band wagon to make my vision worse. Does anyone notice any changes in vision with Lupron?

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May 4, 2011 06:25AM Member_of_the_Club wrote:

INDA, have you seen a ophthalmologist?  You really, really, need to.  Rather than assume its the tamoxifen, please go get an examination.  Blurry vision can be the sign of a medical emergency involving the retina.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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May 12, 2011 06:13PM, edited May 12, 2011 06:14PM by kayakgirl

Within 2 weeks of being on tamoxifen I developed floaters, flashes of light and extream eye dryness, At that time, the eye doc said I had peripheral vitriuos detachment (the stuff in my eyeball was drying out) and have newly developed cataracts. I had punctual plugs inserted in my tear ducts and was using all types of eye drops.Over the next 2 years my eyes just got worse with increasing eye pain, dryness, blurriness, extream redness, and finally increasing occular pressure. Finally after being on Tamoxifen for 2 years 4 months the eye doctor diagnosed me with Tamoxifen-related ocular toxicity and my oncologist  (who was somewhat doubtful) took me off of Tamoxifen, gave me a month of no anti-estrogens and then put me on Arimidex. After being off tamoxifen the eye blurriness and pain slowly subsided. I still have dry eyes and my cataracts but on the Arimidex my eye problems have decreased about 90%.

Dx 06/2008, ILC 3.8 cm, Stage 2A, ER pos/PR pos, Her2 -,SNB with isolated tumor cell, 07/08 bilateral mastectomy with reconstruction and port inserted, 4 cycles of chemo TC x2 then AC x2 from 08/27-10/29/08, started on Tamoxifen

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May 12, 2011 07:26PM Chocolaterocks wrote:

hi All,

I finally started on tami on 4/23 and my eyes are so dry- I am going to see an opthamologist next Thursday- purchased preservative free eye drops... I believe its the tami - so let us see.

chocolate

Dx 1/13/2011, ILC, <1cm, Stage Ia, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 25, 2012 07:33PM bdavis wrote:

I want to bump this thread up as I am definitely having blurry vision issues on tamoxifen. I have been on it for 5 weeks and have noticed decreased vision. I already suffer from dry eyes, so this is putting me over the top. At work I find that by 2pm I am totally bleary eyed. Long ago when I was at my eye doctor complaining of dry eyes he told me to use Systane.. I have recently bought another bottle due to the irrritation.

Betsy... 1.9cm tumor, micromet in SN, ER/PR+ 98% .. Had my BMX and Reconstruction in NOLA

Dx 11/12/2010, IDC, 1cm, Stage IIa, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Jan 25, 2012 08:00PM lisa-e wrote:

bdavis, If you are having blurry vision shortly after starting tamoxifen, I would see your optometrist or ophthalmologist.  Tamoxifen can cause cataracts, as can AI's.  I developed cataracts within two months of starting arimidex.  

Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction

Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2-

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