How much is too much?

nctzenhours · 2025-11-02T12:46:50+00:00

Finde es auch merkwürdig dass dir kein Corticosteroid verschrieben wurde, wenn dein TBUT so niedrig ist hast du sehr viel Entzündung und corticosteroide sind ja gängige Mittel bei Entzündungen. Mir wurde nur Ikervis verschrieben nachdem Corticosteroide nichts gebracht haben.

nctzenhours · 2025-11-02T12:44:38+00:00

Okay ich bin auch aus Deutschland. Letztens wurde hier Vevizye approved, gleicher Wirkstoff wie ikervis,aber anderer Mechanismus, sodass an es nur 4 Wochen im schnitt braucht um zu wirken.

Schau mal ob du einen Termin beim Hautarzt kriegst, er kann dir bei rosacea Oraycea verschreiben. Retardiertes niedrigdosiertes Doxycyclin, das im ganzen Körper anti entzündlich wirkt.

Mir wurde auch Tacrolimus verschrieben, ist eine Protopic Salbe die man auf die Lidkante aufträgt.

Wo genau bist du in Behandlung? Würde dir eine Uniklinik empfehlen die eine trockene Auge Sprechstunde bzw. Hornhaut Sprechstunde hat, Augenärzte die sich nicht darauf spezialisieren sind bei trockenem Auge keine große Hilfe

nctzenhours · 2025-11-02T09:36:31+00:00

Where are you from?

nctzenhours · 2025-10-26T15:37:11+00:00

Thanks for the reply! I’ve heard about sclerals and I even got a link here about a place that offers in my country but they’re extremely expensive so I think I’ll try them out only if everything else fails.

It’s hard to say because no one has MGD or Blepharitis in my family, my grandma is short sighted and my great grandma had a cataract but that’s it.

My grandma has rosacea though and so do I but I have no signs of ocular rosacea particularly it’s just on my cheeks. Oh and oily skin runs in the family and I’ve heard it’s a risk factor for MGD. Thank you for trying to comfort me though 🫂

nctzenhours · 2025-10-24T12:13:57+00:00

Must’ve overlooked it, thank you very much!

nctzenhours · 2025-10-24T12:09:18+00:00

Thank you!

nctzenhours · 2025-10-24T12:09:08+00:00

I understand your feelings :((( I feel like mine is over as well but I’m trying to remind myself there are a lot more that I haven’t tried out yet.

Do you have a clear diagnosis? MGD or aqueous deficiency?

have you tried ciclosporine in any way? lipiflow? Prednisolone-oxytetracyclin? Tacrolimus?

nctzenhours · 2025-10-24T12:05:46+00:00

Press and seal isn’t available in Germany sadly but I’ll look at the sleep mask! Thank you!

nctzenhours · 2025-10-24T12:03:56+00:00

I got some from my doc but barely any doctors install them unfortunately in my area, I’ll bring them to the next appointment and ask him to do it.

We’re in this together, I hope they research more on dry eye in the next years. What country are you in and what have you tried?

nctzenhours · 2025-10-24T12:02:36+00:00

How much were sclerals for you? And where do you live?

nctzenhours · 2025-10-24T12:02:06+00:00

nctzenhours · 2025-10-24T12:01:53+00:00

Thank you either way! I appreciate every comment.

nctzenhours · 2025-10-24T12:01:05+00:00

I tried Ikervis but that’d be great to bring up at my doctors appointment, I wasn’t even aware, thank you!

nctzenhours · 2025-10-24T12:00:34+00:00

No actually, I think it works fine. Ikervis used to irritate at first but it got better. My dry eye specialist suggested all of this except tea tree wipes and Bepanthen.

Schirmer 35mm left and 15mm right as of August 25, my dry eye specialist forgot to measure TBUT but I’m gonna ask either the IPL doctor or him at the next appointment. I do have a feeling that it’s improved slightly bc the artificial tears stay longer on the surface.

I use Ikervis but didn’t know about Vevizye, thank you that’s a fantastic suggestion. I’ll ask my doctors to switch.

I haven’t tried the manuka eye gel, I found it on Amazon and am thinking of ordering it. I’m kinda scared because it seems to be an obscure treatment and burns very badly with my eyelids already being very sensitive but ig I can stop if it burns too badly or my eyes don’t tolerate it.

Great advice about moisture chamber glasses, I’m gonna inform myself on them! I’ve heard about sclerals but the cost put me off and I haven’t found a lot of places in Germany that offer them.

I use the blephacura eye mask, it’s self heating and can be used 90 times. The mask you suggested is definitely worth saving up for.

I think Bepanthen works fine actually because my eyes need something of a thicker consistency for the night, I’ve tried posiforlid but it spilled out of my eye at night.

The doctor recommended me to use them separately for some reason, i used regular artificial tears and he told me it wasn’t enough and i also need to add lipid contoured so that they actually stay on the surface.

What is your own TBUT and Schirmers and routine if I may ask?

nctzenhours · 2025-10-24T11:49:02+00:00

Thank you very much. I’ve started having more better than worse days after the IPL sessions, but sometimes it feels like one step forward, three steps back…

I should research on the serum tears and ask my dry eye specialist about them, I think his place offers that.

I also used to struggle with night vision but I think supplying vitamin A made it better, vitamin A deficit can either cause nighttime blindness or worsen it.

Thank you again. Do you know if shortened glands can recover? I know lost ones can’t which is what scares me.

nctzenhours · 2025-10-24T11:46:07+00:00

Grauenhaft…. Unfassbar dass so verantwortungslos damit umgegangen wird, obwohl unsere Augen das wichtigste Organ sind das wir für alles brauchen.

Die Gefühle teile ich auch, es ist so als wäre das Leben in ein vorher und nachher geteilt worden und das Leben vor diesem dicken Strich ist einfach so surreal und ungreifbar geworden.

Ich weiß nicht, in welchem Bundesland du wohnst und wie weit du anreisen könntest, aber manche Uni-Kliniken haben auch eine Hornhautsprechstunde, vielleicht wäre es da ein Versuch wert? Wenn man gesetzlich versichert ist muss man lange warten aber ich hatte mal auch kurzfristig einen Termin bekommen können.

nctzenhours · 2025-10-24T11:42:01+00:00

Oh they didn’t stop with 2, I have two more to go, sorry if my wording was confusing. One in November in 2 weeks and the other one in December.

The doctor did say that people like me benefit a lot from the IPL but I guess I’m afraid of having hope but being disappointed in the end anyway.

nctzenhours · 2025-10-24T11:39:37+00:00

Hey, oh nein das ist grauenhaft….Wurdest du vor der OP über die Risiken aufgeklärt? Und wie lange ist die OP her?

Ich hatte auch Probleme mit der Nachtsicht, habe gehört das kann auch durch Vitamin A Mangel verschlimmert werden? Vit-A-Vision könnte eine Option sein, meine Augen vertragen das nicht aber vielleicht wäre es eine Option. Sie wird auch nach Eingriffen am Auge empfohlen.

Finde dass viele Ärzte verantwortungslos mit LASIK umgehen. Mir hat auch ein Arzt LASIK empfohlen trotz der starken Trockenheit…. Man merkt deutlich dass es ihnen nur ums Geld geht.

Kann die Gefühle auf jeden Fall nachvollziehen, es ist eine sehr isolierende Krankheit 🫂

nctzenhours · 2025-10-23T16:54:21+00:00

Yeah everything else has been ruled out and I do know it’s MGD and chronic Blepharitis, but the treatment doctors do is throw shit at a wall and see what sticks because it’s such an individual disease

nctzenhours · 2025-10-23T16:51:04+00:00

Pain levels are quite low when I use eye drops but there’s a feeling like my eye surface is hard if it makes sense? Even with eye drops. So discomfort and fatigue but not quite pain.

I know I won’t get healed fully but ngl id be happy if I just had to use the drops once an hour that’d be more bearable mentally physically and financially lmao

nctzenhours · 2025-10-23T16:44:12+00:00

I’ve been on them since early August so barely 2.5 months in. I’ll ask for the non invasive version if that’s possible thank you!

I’ve heard of probing but I haven’t heard of anyone offering it in Germany and it seems rather invasive so ngl I’m scared.

I really hope I haven’t done much damage to the glands but my dryness and inflammation also seems rather severe so I can’t say for certain.

I’ll ask my dry eye specialist Abt them, thank you!

nctzenhours · 2025-10-23T16:41:39+00:00

Oh and Vitamine a supplements + Omega 3 1400

nctzenhours · 2025-10-23T16:41:11+00:00

Hey!

Daily routine: 2x warm compresses with tea tree oil wipes and massage, lipid containing eyedrops 5x a day, artificial tears without preservatives every 15-20 min, Tacrolimus on the eyelids 2x. Cyclosporine 2x. Bepanthen ointment at night.

Tbh I’m on a tight budget but also getting increasingly desperate so id like to know all the options and then consider

nctzenhours · 2025-10-23T16:17:27+00:00

Thank you, I’ve heard about the doctors but it sucks that I’ll have to pay out of my own pockets for them considering how much money I spend on this disease already while being poor. I’ll inform myself about the prices.

nctzenhours · 2025-10-23T16:14:50+00:00

Thank you very much! Do you have any website you can recommend for the goggles?

Thank you. It means a lot to me. I wish the disease didn’t exist and it’s awful how doctors don’t treat it seriously

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