Sjogrens ocular rosacea last year killing me one eye after compress

[Scheana1980]

Hey everyone. I have Sjogren’s ocular rosacea and MGD. I think it’s all kind a left under Sjogren’s in my case. Anyway I was doing better for about four years, I’m 43 and the last year since last summer it seems every time I do a compress especially after getting my eyes expressed at the doctor. My left eye flares up really bad for a day or two and I seem to get up in a flair for a couple of weeks if I keep doing the compresses. I tried to stop but then my glands get so dry because the oils are coming out. Anyway I’m just at my wits and what to do. I don’t know if it’s because Just my Sjogren’s flaring up again or because of the rosacea and maybe because I started eating citrus fruits and avocados since last summer. I know that sounds silly but I’ve read about people flaring up from that. So I’m going to stop eating those two things and see what happens but in the meantime I’m going to try to just do a compress every few days maybe just not go as hot? I don’t know it seems I’ve tried everything. Once I do the compress I miserable that night and the next full day and I never get back to my old normal. It’s just drop after drop plus Lotemax three times a day right now plus ice compresses. I’m also using compounded hormones drops which I’ve been on for years but also compounded cromolyn which was so expensive for my allergies and I haven’t had to use that for for five years. I should add that I am and I am on a play or diet gluten-free dairy free corn free soy free all the good stuff LOL. Any advice on what to do with the compresses? If I wait too long my eyes get dry from the oil not coming out but if I do them even every other day my left eye just kills me and wells up so red and just burns in tears or is just bone dry it’s horrible. Thanks guys

[Scheana1980]

Should I maybe just try the compresses not as warm as I’m doing? Or maybe for not as many minutes? I was heating up for about 30 seconds in the microwave I test them before putting them on my eyes been doing it for years but again my left I wasn’t flaring up so bad like this. I’m wondering if I did it with less heat and for last time if that would help and maybe just every other day? Sorry I’m just at my wits end it’s like I can’t help one problem without hurting the other. OK logging off good night thanks to ever reads this and can potentially help. I’m so sorry that we all go through all this crap. Life is too short and we should just be having fun LOL

[Rebecca Petris]

every time I do a compress especially after getting my eyes expressed at the doctor. My left eye flares up really bad for a day or two and I seem to get up in a flair for a couple of weeks if I keep doing the compresses....

Should I maybe just try the compresses not as warm as I’m doing? Or maybe for not as many minutes?.

Hi Scheana1980 and welcome!

Rosacea and heat don't mix too well... Small compress (like the smallest Eye Eco thermoeyes thingies) and controlled temp is good... overheating is a common trap many people fall into!

But what really interests me is that it sounds like your flare-up is one eye only. I can kind of relate to that because my left lid is always much more tender and less tolerant of tea tree oil, heat, etc.

With dry eye, we can often drive ourselves nuts trying to find explanations for things. Sometimes it just comes down to experimentation... doing less of what makes it worse, and more of what makes it better. To me, it doesn't sound helpful to be doing something that puts you in so very much discomfort, predictably. I would leave off till you can connect with your doctor about it. It's one thing to have one rough in-office treatment that it takes a day or two to recover from (like dilation for plugging, or very firm expression of very very plugged glands) but if a normal daily routine causes that much discomfort, something's not right and needs exploring....

[Guest]

I'll throw this out there...I use a bruder compress. I used to heat my compress 27-30 seconds and I could not get relief. My inflammation was out of control. So I went on a course of steroids and when I started compress again, I decided to use my laser thermometer to check the temp of my compress. Two things stood out...1) 27 seconds was WAY too long, I finally adjusted back to 20-21 seconds and I get my mask around 44-47C which is perfect temp for me. 2) my right eye pad was/is always 3-5 degrees hotter. So you may be having that issue as well, uneven heating. One way to combat that is to stop the microwave half way through then restart...but normally I just put the left one on first and once the right one gets cooled enough, I lay it on that eye. Rarely do both sides come out the same temp. Hope that helps.

[Rebecca Petris]

Dowork123... Good for you for troubleshooting and figuring it out! That's awesome. I think it's extremely unfortunately that patients aren't given better guidance about compresses and lid care in general. Products with controlled temperatures are perhaps the safest and most effective if they are reaching the appropriate temperature. But they're expensive and not suitable for everyone. Personally I use a rice baggy, and I shake it up very carefully and let it sit till it's the temperature I want.

[Guest]

Dowork123... Good for you for troubleshooting and figuring it out! That's awesome. I think it's extremely unfortunately that patients aren't given better guidance about compresses and lid care in general. Products with controlled temperatures are perhaps the safest and most effective if they are reaching the appropriate temperature. But they're expensive and not suitable for everyone. Personally I use a rice baggy, and I shake it up very carefully and let it sit till it's the temperature I want.

Thanks...yeah, that's been my biggest issue. I've seen doctors that are good at understanding dry eye....however, they don't explain the treatment well. I did compresses wrong for 3 precious months. Then I realized I could quantify the heat with the thermometer and that changed everything.

[Scheana1980]

Thank you Rebecca. I just logged in and saw your message .and thank you Dowork! You both mentioned a good point. The overheating of the eye mask. I was doin get better for several weeks but I have noticed at times the mask seems a lot hotter than usual . I microwaved it just now to take its temperature..it was up to 188 F! That is way too hot. My eye is once again irritated and inflamed and was before my eye apt yesterday where he expressed my glands. I may skip the compress tonight and start tomorrow...at a lower temperature. Thank you for the advice. I think my body flares up when it wants due to sjogrens, and sometimes can take super hot heat , but it’s not worth risking it!
Pill keep up I guys posted.
So happy I found this site. Cheers
Scheana