Has anyone had very dry eyes and eyelids while on HU?

Yes, that seems to come up a lot here--dry eyes and skin. I think @loribmt had suggestions for this awhile back.

Hi @scienceteacher I ran through the gamut of reactions with my eyes during treatment for leukemia, including sore, itchy eyelids, burning, watery eyes and lids that would stick to my eyeball over night. I was a beauty queen for sure! LOL I found out all of those symptoms were from my incredibly dry eyes. Which didn’t make sense because my eyes were watering all the time! But those tears weren’t lubricating the eyes, just causing irritation to the lids. Age and meds can change our chemistry.

Make sure you mention these newer symptoms to your doctor. But in the meantime this is what I used to bring relief.
~First, no makeup for a few days. A very light coating of Vaseline on your lid helps the burning.
~Try compresses several time daily with a warm, wet washcloth. Leave on for 15 minutes at a time. You can also buy eye compresses which can be tossed in a microwave for a more constant heat. This feels soothing but also opens any potentially clogged tear ducts.
Bruder’s moist heat eye masks work great! (Drug store)

~Try gentle eyedrops daily such as Systane. Avoid drops used to whiten.

This was the game changer for me. Been using it for 7 years.
~Systane Nighttime Lubricant Eye Ointment (not the gel) Comes in a small squeeze tube, cost about $15.00 and lasts a month.
Needs to be used consistently at bedtime for best results. It’s a little messy so don’t put it in until you are ready to close your eyes for the night.
You put a little squirt in your lower eyelids. Then blink to coat the eye. The ointment melts over your eyeball, coating all night. Your vision will be a little blurry from the oil.
If you need to see, then rapidly blink your eyes and they will clear.
Use an old pillowcase because this is oily and will ruin good linens. In the morning, just use a warm washcloth to wipe your eyes.

Hopefully some of these suggestions work for you. I really feel comfortable in recommending the Systane Nighttime lubricant. My ophthalmologist has even commented on how healthy my eyes look…no dryness or pitting. Let me know if it works for you, ok?

@loribmt Thank you SO much. I will try these steps and see how it goes.

Hi @scienceteacher, joining in as another voice here. Dryness of the skin and mucous membranes is one of the more common effects people report on HU, so I don't think you're wrong to wonder about it. Worth raising with your doctor at the next visit rather than assuming it's the eye makeup, especially since the lid skin sounds irritated.

One thing I'd add to Lori's excellent list: it can help to have an eye doctor actually look at the lids rather than just treating the dryness. Sore, red, itchy lids sometimes turn out to be blepharitis or blocked oil glands sitting on top of the dry eye, and that needs lid hygiene (warm compress first, then a gentle wipe along the lash line) as well as drops.

Also, if you end up using drops several times a day, the preservative-free ones in single-use vials tend to be gentler than the bottled versions. Preservatives can irritate lids that are already unhappy.

And it's worth looking at everything else you take, since antihistamines, blood pressure meds and a few others add to dryness too.

Hope it settles down for you.

@clinectthan
Thank you for the additional information. I am thinking it has a good chance of being demodex blepharitis since I have three risk factors; over 65 with rosacea and taking HU. The lid irritation along with the eyelashes thinning and some lashes heading in the wrong direction make me suspicious.
Since my husband has recently had cataract surgery he has a good supply of the single-use vials of lubricating drops, I will try those.
I have an eye exam already scheduled in two weeks so I hope I will get a diagnosis then.
Thank you everyone on this site for all the excellent support.

@nohrt4me
This may help you. I have allergies to 102 chemical medications, so I have to use purely natural items.
You can try Sappo Hill pure oatmeal soap, no chunks @sappohill.com. Target sells it though i haven’t seen it here. For shampoo I use boodah butter Shampoo from boodaorganics.com. For moisturizer I now have to alternate to fake out my immune system: believe it or not! Crisco, olive oil, coconut oil, Badger Balm from badgerbalm.com, hyaluronic acid, or anything like any one of these. You don’t use them altogether! One day this. One day that. Use it at nite before you go to bed. I get these at the local Co-op and sometimes just call the company when the store is out-of-stock. It’s not cheap, but it works. Why? Because all and I mean all over the counter stuff has emollients from - really - gasoline production or coal production called PEG of which there are 1,000s of them in everything you see on the shelves in stores. Also, in Winter take your shower in the morning. Use water only on hands and legs, back and chest and use your hands. I work from home so it works for me. If I go out, I have a real shower. Hope this helps! I go to Mayo where they skin test or oral test any med I need, which slowly is working for some of them. Best wishes. Oh! Another thing. The best eye moisturizer is Bion Tears made in France and sold locally in LaCrosse WI at Woodman’s and at one of our pharmacies. You can use these eye drops as much as you need them. Europeans don’t put alot of junk in their OTC meds. I even use it on the skin on my eyelids and nose too. Don’t use them ones made by Systane - alotta PEG. Use the ones in a large blue green and pink box made by Alcon Labs Texas made in France = Preservative Free vials. Best skin! @admeliora

@admeliora Thanks! Like @scienceteacher I also have rosacea, am over 65, and on HU. I have done ok with Vanicream products, but face cleansers are hardest to get right. Most of them make my face burn. Any specific face rec's?

For anyone with Rosacea, I have sympathy! Me too. That’s trickier. The Dermatologist is the best place to go. They tried antibiotics and - of course - my allergies caught up with that. They tried Blu Ray Light therapy. That worked until, you guessed it, I reacted. But I would seriously check there. Like I said, the Bion Tears are my standby for eyes, and both my Opthamologist and the Neuro opthamologist at Mayo told me; Hold a warm wrung out wet wash cloth (clean of course) on the closed lids at wake up and at bedtime. You see, my lids were getting caked with sebum - can happen after surgeries of the eye, which I’ve had my share of. I didn’t believe it till I tried it. Then I clean them off with Bion Tears on a Q-Tip careful not to get that thing in your eye because you’ll surely feel it. Other than that, ask your eye doctor exactly. I’m no Doctor - just an alumni of allergy hell! Haha. @admeliora