MGD - some advice

[Tom123]

Hi. I'm a 39 year old male from Netherlands and suffering from MGD.
I am looking for some advice based on my story, as I understand that treating dry eye/MGD/etc. is very personal and may require different strategy/trial & error for each individual

My story starts in 1997 (13 yo) when I in parallel developed acne rosacea, seborrheic dermatitis and the eye discomfort. As the eye problem only existed primarily at school I had much more focus on the skin issues, on which I only started treatment on eyes very late in the game. Thoughout the years it became slowly worse and worse and the main symptom was 'eye irritation'. From 2006 onwards it became very problematic (irritating eye lids, bloodshot eyes, TBUT most of time under 2s). After many doctor appointment etc. I got literally diagnosed by an ophtalmologist as "Eczema in the eye". I got prescribed Terracortril (antibiotic / cortison) which I could use as long as needed (like an infinite recipe) - I took it for 6 months straight (little did I know about side effects) and I was like reborn. It saved my life as I had the best 20's and 30's I could wish for (marry/kids/house/work/travel/party/go out/etc.).

In March 2022 when I started to go to work again after a 2 year 'lockdown' (and alot of screen time!!) I started feeling dry eyes again, after like 14 years. It quickly became worse and worse. I started trying to treat it with Terracortril (2 weeks) but it didn't do much. After some going back and forth I got diagnosed with MGD. I have like 18 glands in each eye and 6 were completely obstructed in each eye. I had 4 IPL's to have the obstructions cleared, but I still had/have many symptoms. From Nov 2022 to April 2023 I was on a 6 month doxycycline course (100 mg/day) which really gave me the best results in the past 18 months. I estimate to be on 75/80% and only had some sense of dry eye.

Currently I'm doing my daily blephasteam goggles twice a day. It helps me at least to keep my TBUT good. But after use of doxycycline it looks like a slow but steady downfall to worse. My eyes are dryish, sweaty, sticky, like there is diesel in my petrol engine (or vice versa). Like some kind of foreign body sensation by lack of and/or quality of the oil. I don't read much from anyone about the symptoms I have, so that makes me a little uncertain on this.

I read a lot about 40mg doxycycline (oracea/efracea) to support instead of 100mg. Are there any experiences on this? One can not go resistent on this? Also; I'm afraid I will never get off antibiotics as the downfall was so big when I stopped doxycycline. But, better a life on antibiotics then a housebound life without antibiotics. That's a very very easy choice.
Are there also experiences on eye drops? I use Systane Complete now which is the best drop I found to date. The issue I have with the drops is that the feeling is gone after like a matter of minutes. Systane gives me some prelonged relief, but not that much more. Is this what Punctum plugs could help out?

Thanks for reading and any advice that could come!

[Cissou]

Hi, ipl directly on lids is very good. Do you know gland probing ?

[Tom123]

Hi Cissou. Thanks for thinking along. It is very much appreciated. The 4 IPL's I had last year helped certainly to some extend, but symptoms came back very quickly. The IPL I did this year I didn't notice any improvement, even though any blockage was removed. I never did gland probing, but I doubt it's going to give me long term relief.

My best hope is on the antibiotics as I reacted positively before. I stopped this year after 6 months of doxycycline (on my doctor's advice, not an ophtalmologist) and I still had the sense I was improving at that moment in time - it's just such slow process like growing older that it's hard to quantify. I know for sure things went downhill rapidly and still do today after stopping doxycycline. Just the convential blephasteam goggles, massaging and cleaning is not doing the trick. I'm fairly confident It prevents the symptoms to go down even quicker if I didn't do it, but it's not making things better either.

Therefore my initial ask if there are experiences on 40mg oracea/efracea (doxycycline) instead of 100mg? I heard results should be similar (clinically proven), but it's good to hear some feedback from the people who really are using it or did. Also; at this moment I wouldn't know how I would ever get off antibiotics - the downhill was just so quick. I don't want to make things worse by stopping but I also don't want to become resistent for it. Any feedback is very appreciated! Thanks all.

[Tom123]

An update from my end on this topic. May it help someone else.
First of all, I'm still going through the dry-eye/MGD rollercoaster, unfortunately. I'm still trying to find a way to control as good as possible.

I have extensively tried the low-dose slow release 40mg Efracea (which is Oracea in other parts of world), but I definitely couldn't get the effect I had hoped for. It's just not doing it for me. I have tried it for close to a year. I am now back on the 'normal' doxycycline 100mg (1 month now). I think/hope it's improving very, very slowly but it's just hard to tell. Last time it took probably around 3 months to really achieve good results, so we keep on going. The plan is to use it for 6 months and then see where I stand, depending on the result from there try to tamper down and see how it progresses. Not just a hard stop, as before.

Further; I did do 4x Rexon Eye earlier this year and I can really say it did something for me. I really had somewhat better eyes for some months. But, as with everything; these effects vanish.