Dry, sore eyes and mycophenalate

[Yorkshiremeadows]

Hi Lupies, recently been moved from methotrexate to mycophenalate and my eyes have become really sore and dry. Is this is a common side effect that anyone has experience of ? Thanks !

[OldTed60]

I’ve had both drugs and now just taking Mycophenolate with Rituximab. I’ve never experienced dry eyes from meds other than Amitriptyline. In fact the opposite in my case and my eyes only stopped being dry when i was put on Mycophenolate - one of the benefits for me as I have Systemic sclerosis and Sjogren’s. Could this possibly be a coincidence as dry eyes aren’t a known side effect as far as I’m aware?

[Yorkshiremeadows in reply to OldTed60]

Hi OldTed, thanks for replying. Yes, absolutely could be a coincidence. Nothing is beyond the realms of this disease ! I was only diagnosed earlier this year so still working out how it affects me and perhaps this is one of the ways. Haven’t had anything wrong with my eyes before now and sjorgens so linked it to the methotrexate, but maybe just a coincidence.

[OldTed60 in reply to Yorkshiremeadows]

Sjogren’s can come on rapidly with RA or Lupus-like symptoms so I found out when all started for me many years ago. Like a bad old package!📦 I was initially misdiagnosed with RA, then 5 years later changed to Sjogren’s, then overlap CTD, now seropositive Systemic Sclerosis - the rest all now shrugged off as part and parcel of my main disease.

[ClassicVintage]

Hello! I think it’s more likely the lupus deciding to give you dry eyes rather than the medication, therefore possibly just a coincidence. I suffered with dry eyes in the months leading up to my lupus diagnosis, that was well before any medication was given. Mycophenolate made no difference sadly - I continue to have dry eyes.

[Yorkshiremeadows in reply to ClassicVintage]

Thanks for responding classic vintage. I’m sorry to hear you still have dry eyes. It’s a horrible symptom! I think you may be right. It’s the lupus. My joint pain is up too. X

[RosieA]

I'm now nearly three months into Azathiorpine and would say that my eyes became increasingly dry just before starting this drug. I suspect this was mainly due to increased disease activity rather than any drugs. Sadly, like ClassicVintage they remain very - indeed quite painfully, dry at times.

[Yorkshiremeadows in reply to RosieA]

Sorry to hear this RosieA. I hope you find something. That helps soon x

[Spanielmadlady]

Hi. I've been on mmf for 5 years and not experienced any changes in my dry eyes. I have sjogrens so have dry eyes anyway. Might be worth mentioning it to your rheumy and asking about sjogrens . Warm eye masks help . I'm prescribed hyloforte eye drops but they can be bought otc . Kind regards SML xx

[Yorkshiremeadows in reply to Spanielmadlady]

Thanks SML. I have those drops too but not helping much. My eyes seem swollen and sore so maybe it is inflammation. I don’t have sjorgens thankfully, but if this is anything to go by, it must just be awful ! X

[nottypical]

I had dry eyes years before having to take mycophenolate & fine hypromellose eye drops very good

[Krazykat26]

I'm wondering if you might be developing photosensitivity 🤔If myco isn't causing it then what is? Have a think about these things ..do you use computers a lot? Do u spend time on social media? How are you with indoor lighting or sunlight? How much water are you drinking?

It's a well known fact that when we are using any type of screen that we tend to blink less.

The reason why I'm replying is because we tend to think has anything changed and you've had a medication change so it's understandable that you might think it's related.

I'm extremely photosensitive and I have to lessen the brightness on my phone and tablet. I can't stand being near computer screens without my sunglasses on. They give off a lot of 'blue' rays. You can maybe dim the brightness on gadgets and see how you go. Maybe get some of those special blue blocker glasses. TV I can't watch it at all. I watch TV programmes on my tablet at night with the screen dimmed and blue light blocker. I know this sounds extreme but I am extremely photosensitive 😹 I have lupus and sjogrens among others. I use hyloforte eye drops during the day and Xaline night time gel. 😎🌈

[Dogsaremybestfriend]

I agree with krazykat, definitely worth a try to stop all screens and no reading for a day. Good luck!

[DogHospiceMom]

I am not on medication for my many autoimmune disorders except pilocarpine or cevemeline for dry mouth. My eyes were so dry that I was only seeing 20/300 out of 1 eye. After having a placenta bandage put on my eye for 8 days, my doctor ordered scalera lenses.