Eye pain and sight deterioration

Hi Rozilla, we meet again!  I’m sorry you are having eye trouble.  I can sympathise with you because, although not related to your problem, I have macular degeneration and have had a series of eye injections and the after effect is exactly how you describe your pain.  Definitely not related so please don’t think that’s what you have.  However, since I am familiar with the hospital eye department, I would push your GP or your oncology team for a hospital referral.  If nothing else it will put your mind at rest after having expert scans etc.  we’ve all been through a touch time with breast cancer so it’s only fair that your team make a referral. Take care x

Sorry, I meant Rozalia

I’ve had sore watery eyes from before I had BC and it was found to be allergies. I use antihistamine eye drops that I have prescribed by the dr as can’t use the over the counter ones if they have preservatives due to being allergic to preservatives. The relief is almost instant…..might be worth a try.

Also you can get an eye bag which you heat in the microwave and place over your eyes and massage for a few minutes to help produce more oil, recommended for blepharitis which causes similar symptoms. There’s also ointment you can put in at night which gives some relief… might be worth a GP visit.

Hi Rozalia,  Sorry about eye issues.  Never second guess anything with the eyes as I have had issues since I was 30 when I had my first detached retina.  Have had a couple more since and cataracts and now glaucoma.  I should write a book!  Don’t want to scare you but you need an ophthalmologist to do a thorough eye exam.  Could be severe dry eyes or something else but my advice is see specialist.  Take care.  By the way with everything going on with my eyes I still see 20/20.  Now that is something special and I give credit to God and my great Doctors.  
Barbara

Hi Rosalie, I also have a lot of problems with my eyes. I believe this to be a side effect of Letrozole. First I used drops; every kind of drops I could buy but it didn’t help for any length of time. My ophthalmologist suggested an eye mask heated in the microwave and massage. This is better than the drops but I still feel as if I have broken glass in my eyes all the time. I have had to stop driving because of this. The BC nurse said it was my age. I’m 68. I decided to take a break from Letrozole just to get some respite from the eye pain. I’ve had no Letrozole for four days and there is already a vast improvement. 
I will go back on Letrozole and I will speak to my BC nurse again but I am totally convinced that dryness of the eyes can be caused by oestrogen reducing drugs.  
I wish you well. 
JigJog x

Hi JigJog and all others for their thoughtful replies..  Yes I am convinced there is a link and I found this which suggests aromatase inhibitors can be the cause 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8765131/#:~:text=Several%20clinical%20studies%20evidenced%20that,disease%2C%20associated%20with%20meibomian%20disfunction.

I saw my GP who referred me for specialist follow up but this turned out to be a referral back to either Spec Savers or my own optician's Forbes.  I went back to Forbes although I had previously asked about my worsening sight and sore eyes. The only additional check was putting eye drops in and looking at the back of my eye. Anyway she would not say it was related to the aromatase inhibitor(in my case exemestane) Said I would have to ask my GP about this!!! She said my eyes were no worse than when she last looked and like you told me to buy drops, ointment and mask. BUT there was some very reluctantly given reassurance that this was not longterm damage. The implication that it is all age related was there despite it being my long sight that is affected and not really my short plus it only came on with the aromatase inhibitors. I have also had a follow-up note from my GP saying that the drops can't be prescribed only bought , why I wonder when this is a medical condition. Expensive as I have to take them 4 times a day for little relief. 

If I was told clearly this was a side effect and when I stopped the aromatase inhibitor it would go I might be more reassured. I  am wondering about a break from exemestane to see if it improves and also whether the osteoarthritis that has increased also lessens. I get hot flushes but don't mind these too much as they don't last long and I just feel over warm but they are somewhat odd for a 74 year old (Odd that this is the only side effect that isn't put down to being old!)

Forgive my rant, just feeling somewhat depressed, my Mum was in better condition when she was in her 90s. 

Rozalia x

Hi Rosalie, 

Thank you for the link; really interesting research and reassuring that we are not imaging things. 

I have continued with my Letrozole break. I’ve not taken any for 11 days now and the difference is unbelievable. It took just 7 days for my eyes to improve. I have no more broken ‘glass’ in my eyes. It’s lovely to be able to think of something other than the pain in my eyes. 

I shall continue with the break for a little while longer and then start again. It will be interesting to see if the dry eyes return and at which point. 

If they do, I will speak to my BCN about changing the drug or reducing the dose. 

Please continue to post to let us know how you’re getting on. 

Best wishes

JigJog x

I do get that about feeling older than your Mum was even in her 90s. I'm on Tamoxifen, I started on Letrozole but my knee deteriorated, it was really painful going upstairs. I have osteoporosis in my wrists which the first oncologist just ignored. 

You know what your lived experience is. These medications seem to pick up something that was already there and magnify it. I've had rib pain, sternal pain and my back went twice. I wasn't like this before. I'll keep taking it for now. I'd rather live with pain than risk it coming back. Maybe I should ask what the % benefit is. X

Thank you Sabrina, yes it for some reason getting me down more now. I initially thought that things would improve but 3 years on it is worse if anything and being fatter doesn't help. New year resolution is to try and cut down on the calories and walk more. Hope things improve for you. We will get there in the end . Best wishes for 2024 x

I’d suggest making sure you’re getting regular eye check-ups, significantly if your sight’s changing quickly. Sometimes, it’s something simple like needing a new prescription or a lifestyle change. I’ve heard that your improve eyesight naturally can help, too. Things like eating more eye-healthy foods (think carrots, leafy greens, and fish), taking breaks from screens, and even trying some eye exercises might make a difference. It could take a little time, but it’s worth looking into. Don’t forget to get advice from a professional to rule out any serious issues, though.