Besivance costs

The Uphill Battle: Type 2 and Ocular Rosacea

2021.04.09 10:46 poorlylit The Uphill Battle: Type 2 and Ocular Rosacea

tl;dr Neutrogena Ultra Gentle Daily Cleanser is great for my facial rosacea, but sets off my ocular rosacea with the fragrance. What ingredient is in the cleanser that is so great for me?! And where can I find more without fragrance?! I can't find eye drops that won't cause my eyes to become red and irritated either. Hypochlorous Acid is great for eyelids and I love it. Tea Tree Oil, White Petroleum, and Lanolin make everything worse. I'm highly sensitive and reactive to almost everything. Minocycline is not an option. Help.

Hello!
In the beginning, I started to treat my facial rosacea with Prosacea with great results. It needed a little extra help and I added Witch Hazel into my routine. My face completely cleared up and my redness was gone, but it caused me to develop corneal ulcers which led to being diagnosed with ocular rosacea. I stopped what I was doing, but my eyes decided this is life now.
Minocycline did a lot of heavy lifting for both eyes and skin, but it also caused severe muscle weakness in my lowerback/hips that would go away after stopping treatment. This happened every time over years of on-off treatment and across both 100 and 50mg doses.
The doctors are getting tired, I'm tired and running out of money, you're my only hope Reddit. Maybe someone will see a pattern we don't or have a suggestion. If not, I hope my experiences help someone else.

OCULAR ROSACEA

Eyelid Hygiene:
OcuSoft EyeLid Wipes
No. Cheap and easy to find in stores. The pre-moistened wipes make life easier. Sadly, it only worked for a day before it began to cause irritation.
Blephadex Eyelid Wipes
No. Special order and a bit pricey. It did better and I was able to use it longer, but it also began to irritate my eyes after a while.
EyeEco Advanced Formula with Tea Tree Oil
Big No. Special order and kind of pricey. It claims to be safe to use as a facial cleanser on top of being an eyelid scrub. It irritated my eyes the most, and turned my facial rosacea into a battlefield. My entire face turned red with angry red bumps. It calmed down once I stopped using it.
OcuSoft Hypochlor Spray (Current routine, twice a day)
Yes. My Holy Grail! A little pricey and another special order but it does great. 1-2 sprays onto some cotton rounds twice a day and the redness and swelling of my eyelids went away. It also kept the gunk/crusties down. Some days when the gunk is especially caked in I break out the q-tips.

OTC Eye Drops:
Systane Ultra PF
Maybe. It doesn't cause my eyes to turn red, but after a few hours my eyes felt like they were covered in syrup. Lately they have been causing a 'stabby' feeling. Does nothing for the light sensitivity.
Systane Nighttime Ointment
Hard No. The moment I put some in my eyes it felt like I had needles in my eyes. My eyes were completely inflamed and red. Maxitrol (antibiotic/steroid) was needed to calm them.
TheraTears
No. While they felt refreshing, these caused the most redness and irritation with continued use. They did nothing for light sensitivity.
Refresh Optive Mega-3
Maybe. Somewhat refreshing for my eyes but they would cause redness and irritation with continued use. Still, did nothing for light sensitivity.
Refresh Optive Advanced PF
Maybe, leaning Yes. My eyes felt moist longer with these, but like Mega-3 and TheraTears it would cause my eyes to become red and irritated the more I used them. Still sensitive to light.
Prescriptions:
Cequa
Yes. I did great on this! My eye doc gave me a trial pack for a week and my eyes were happy! However, it's incredibly expensive without insurance. My pharmacy said it would cost $1000 USD to fill, and at the time I couldn't find any patient relief program with them.
Restasis
???? Haven't tried it before but it has the same active ingredient as Cequa, hopefully will get a prescription soon. They have a patient relief program.
Xiidra
Big no. My eyes became worse with these drops, super red and irritated, and on top of that it felt like I was fighting a constantly growing sinus infection. There was also a weird taste sensation in the back of my throat. It was not fun.
Protopic
Big no. The eye doc assured me that even though the box says "not for eyes" they use it all the time. Within 10 minutes of putting the dose in my eyes I thought I was experiencing a heart attack. A trip to the ER assured me I wasn't. I hoped it was a one time thing but after each try I had the same reaction until I rinsed my eyes out. Definitely not using this for my eyes ever again.
Maxitrol (2 antibiotics combined with a steroid)
Yes. I did great on Maxitrol. It dealt with the light sensitivity and redness. The downside is I felt a bit off with continued use, to me it seemed to be doing something to my breathing. I would also get terrible, ringing headaches between doses. The eye doctor was reluctant to prescribe a permanent steroid for me to use due to my age (33).
Besivance
Big no. Briefly prescribed this in the early stages when my eyes flared up a second time, and before being officially diagnosed with ocular rosacea. It's slightly thick/creamy and it irritated my eyes something awful. It was a terrible and painful experience.
Overall: White Petroleum, Lanolin, and "drops that don't have the consistency of water" are super bad for my eyes, my body rejects them with every fiber. Hyphocholorus Acid is great for keeping my eyelids clean, and my eyes do well with steroids and antibiotics. I'm hoping Restasis will eliminate the need for a steroid. I am still struggling to find a regular eye drop to keep my eyes wet. I'm looking for recommendations for regular eye drops.

FACIAL ROSACEA (Type 2 papulopustular)

Cleansers:
CeraVe Hydrating for Normal-To-Dry Skin
Big No. Something in it was causing my skin to turn even redder and caused more break-outs. My face felt like an oil spill, it was nasty and unpleasant. Did not irritate eyes.
CeraVe Foaming for Normal-To-Oily Skin
Big No. Same as the other, terrible break outs and worsening redness. My skin felt tight after using it. Did not irritate eyes.
Vanicream Gentle Facial Cleanser
Big No x2. Turns out I'm allergic to mica. That's unfortunate. Required medical attention.
Aveeno Clear Complexion
Maybe. It didn't make things better, but it didn't make things worse either. Did not irritate eyes.
Neutrogena Oil-Free Acne Wash
Maybe. Same as the Aveeno, no visible improvements but didn't seem to make it worse. Did not irritate eyes.
Neutrogena Ultra Gentle Hydrating Cleanser (Creamy Formula) (Current routine)
Maybe. Acceptable but mixed results. It caused a few pimples and it doesn't seem to be doing anything for the redness. Did not irritate eyes.
Neutrogena Ultra Gentle Daily Cleanser (Foaming Formula)
Yes, but No. This was a great product for me and I thought it was my holy grail! No break-outs and redness had visibly been reduced! But it has a strong fragrance in it that irritated my eyes fiercely. Sigh.

Moisturizer:
Vanicream Daily Facial Moisturizer for Sensitive Skin
Yes? Maybe? I had COVID earlier in the year, which strangely cleared up my rosacea but once I beat it my rosacea came back with vengeance and my skin had dry crackly patches. This did well fighting those patches, and seemed to reduce some of the redness. Admittedly, I didn't keep it in my routine cause I was fighting with facial cleansers trying to figure out what was doing what at the time.
Topicals:
The Ordinary's Azelaic Acid (Current routine)
??? I just started this but I'm hoping something good will happen.
MetroGel
Maybe. Like some of my facial cleansers, it wasn't fixing anything but it wasn't making it worse either. It just existed.
Prosacea
Yes. This sulfur based product did well on my skin and greatly reduced my breakouts, it even took out some redness but not entirely. My eyes felt a little dry from it, but nothing serious from it alone.
Witch Hazel
No, but yes. I thought I found a winning combination between witch hazel and prosacea. Together the two cleared my skin and took away all my redness, but it also caused my eyes to explode.

Overall: I loved Neutrogena's Ultra Gentle Daily cleanser but the fragrance was setting off my ocular rosacea. Something in it has an effect on my skin the same way Proscea and Witch Hazel did. Is there any product with similar ingredients to the Neutrogena without the fragrance?

If you made it this far, thank you for reading and I hope you have a wonderful day!
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