23 year old male - need help desperatley

[jm95dryeye]

I had been struggling on my own with OTC eye drops since December 2017, and then have been back and forth to Moorfields since last Easter. At first they said I had chronic inflammation then chronic allergy then finally evaporative dry eye. They just kept telling me to use artificial tears and do warm eye compress. After 4 months of this I had finally had enough and went to the Dry Eye Centre last summer where they did Lipiview and told me most of my glands had gone which explained the non-stop burning. They gave me a private prescription for Ikervis which I have been using for 2 months, but it's not really working, which is painful as it is so expensive.

I know what you mean about Azyter it did nothing for me either except cause a whole load more of burning pain and redness, but it's worth sticking it out till the end at least then you can say to yourself you tried.

Have you tried doxycycline?

This story drive me insane. It seems mental to me that you went to the leading eye hospital in the UK, if not Europe, and they misdiagnosed you to this extent. I have read there is a lot of hope for the re-growth of glands on here, so fingers crossed. I am genuinely considering quitting my job in pharmaceutical consultancy and pursuing a career in ophthalmology because of this horrifically misunderstood condition.

Yes will stick it out with Azter, the end of the course coincides with my appointment with Dr Hamada so can say I've tried it. I went to my GP today for blood tests to check for any autoimmune responses. I just want to know the root cause.

I've been on doxycline for over 7 months now to keep my facial rosacea under control, so can definitely tick that off. I'm putting alot of hope into IPL as my go to treatment for this.

[Guest]

This story drive me insane. It seems mental to me that you went to the leading eye hospital in the UK, if not Europe, and they misdiagnosed you to this extent. I have read there is a lot of hope for the re-growth of glands on here, so fingers crossed. I am genuinely considering quitting my job in pharmaceutical consultancy and pursuing a career in ophthalmology because of this horrifically misunderstood condition.

Yes will stick it out with Azter, the end of the course coincides with my appointment with Dr Hamada so can say I've tried it. I went to my GP today for blood tests to check for any autoimmune responses. I just want to know the root cause.

I've been on doxycline for over 7 months now to keep my facial rosacea under control, so can definitely tick that off. I'm putting alot of hope into IPL as my go to treatment for this.

I think the fact that your glands are all there means you there is a excellent chance statistically that IPL is going to work for you.

As for me, it is partly my fault for going to Moorfields NHS so each time I've been there I have been seen by randomly different doctors who are not experts in dry eye. I should have gone to Moorfields Private though my work health insurance but it would have meant picking a consultant myself and at the time I didn't know what I had exactly so it would have been difficult to pick the right one. Having said all this I still believe that in general there is a lack of interest in/knowledge in dry eye here in the UK, in fact the last 2 doctors I saw at Moorfields said they needed to focus on patients with sight threatening conditions and that my condition was manageable, which it is not.

At the last appointment there they also told me I had a mild form of conjunctival chalasis which didn't need surgical correction. At my next check up I'm going to ask about getting it corrected as I think this might be a contributing/the reason behind the constant burning/redness.

I am keeping my fingers crossed for you!

[Alix]

This story drive me insane. It seems mental to me that you went to the leading eye hospital in the UK, if not Europe, and they misdiagnosed you to this extent. I have read there is a lot of hope for the re-growth of glands on here, so fingers crossed. I am genuinely considering quitting my job in pharmaceutical consultancy and pursuing a career in ophthalmology because of this horrifically misunderstood condition.

Yes will stick it out with Azter, the end of the course coincides with my appointment with Dr Hamada so can say I've tried it. I went to my GP today for blood tests to check for any autoimmune responses. I just want to know the root cause.

I've been on doxycline for over 7 months now to keep my facial rosacea under control, so can definitely tick that off. I'm putting alot of hope into IPL as my go to treatment for this.

I am keeping my fingers crossed for you! You have ever reason to believe IPL is going to work, you still have all your glands.

As for me I am disappointed in Moorfields, the doctors there in general seem extremely disinterested in any eye conditions which are not sight threatening. The last time I went there they told me I have a mild form of conjunctival chalasis which didn't need surgical correction. At my next appointment I am going to ask about surgery as I think this may be the reason/a contributing factor for the constant burning/redness.

Good luck!

[Guest]

If you have rosacea and that’s your diagnosis, I think you have a few treatments that can help you. You have to focus on reducing inflammation entering the eyelid. Which is difficult for you, because your blood vessels are dilated and dumping tons of inflammatory markers into the eyelid. So focusing on reducing inflammation is key.

I think starting wuth stetouds to get to get things under control is very smart. I think doxycycline atv200mg a day (if you can tolerate that) is standard of care for ocular rosacea. Should help you A LOT. I think azyter to start coukd help, but it does burn. However it’s ysyally used to open glands at the start of treatment, to jump start the doxy. So I think these medications can help.

As for treatments, you have to treat the cause of the problem, which again, for you, is rosacea assuming your diagnosis is right. I believe lipiflow would do nothing for you. Ipl is the preferred method to shrink those dilated blood vessels and limit the MMP9 from entering the lids. Ipl will most likely help.

Be careful of plugs. If you have inflamed lids, shoving plugs in there could possibly make things worse. That said, never overlook a possible treatment. Everyone’s case is very individual.

I think that with rosacea, it’s a lifelong management. That’s the case for most of us here. So don’t worry, there are ways to help you that I believe you haven’t tried yet.

did you say something bad happened at your ipl treatment? You think it induces the dry eye? I think I read that in your thread. That worries me because that’s the best treatment for rosacea from my understanding. Let’s try to figure this out. There are s lot of good people here that can help.

[jm95dryeye]

Hi all - thought I'd give an update. I just had my third IPL. No improvement at all, my eyes are actually considerably worse than before I started the course of treatment. Had to quit my job - safe to say I have absolutely tried everything and my life is ruined at a young age. I pretty sure I will become suicidal in the next few weeks.

[Alix]

Hi all - thought I'd give an update. I just had my third IPL. No improvement at all, my eyes are actually considerably worse than before I started the course of treatment. Had to quit my job - safe to say I have absolutely tried everything and my life is ruined at a young age. I pretty sure I will become suicidal in the next few weeks.

What was Dr Hamada's diagnosis? You still have all your glands so you shouldn't give up hope. Some people see improvement after the 4th IPL, why not do one more round and see how it goes?

[jm95dryeye]

What was Dr Hamada's diagnosis? You still have all your glands so you shouldn't give up hope. Some people see improvement after the 4th IPL, why not do one more round and see how it goes?

He said the oils aren't bad but now theres a problem with the aqueous layer. Inflammation in the eye still 'severe'. He put 2 temporary punctual plugs in. He's also put me back on FML (which I've used 100 times to no effect and been on far stronger steroids to no effect) and flaxseed oil. I'm going to have the 4th in a month but just lost all confidence, I actually spent thousands on this and it just got worse. I now have no job, no money and no life.

[Topher3]

I am keeping my fingers crossed for you! You have ever reason to believe IPL is going to work, you still have all your glands.

As for me I am disappointed in Moorfields, the doctors there in general seem extremely disinterested in any eye conditions which are not sight threatening. The last time I went there they told me I have a mild form of conjunctival chalasis which didn't need surgical correction. At my next appointment I am going to ask about surgery as I think this may be the reason/a contributing factor for the constant burning/redness.

Good luck!

Do you have more of a red haze or individual red veins? I have a lot of individual veins running along the whole outskirts past the iris I also have veins now coming up from the bottom to the iris too. Slowly getting worse and worse unfortunately for me ....

[Alix]

He said the oils aren't bad but now theres a problem with the aqueous layer. Inflammation in the eye still 'severe'. He put 2 temporary punctual plugs in. He's also put me back on FML (which I've used 100 times to no effect and been on far stronger steroids to no effect) and flaxseed oil. I'm going to have the 4th in a month but just lost all confidence, I actually spent thousands on this and it just got worse. I now have no job, no money and no life.

I have spent thousands as well.....have you tried Ikervis?

[Alix]

Do you have more of a red haze or individual red veins? I have a lot of individual veins running along the whole outskirts past the iris I also have veins now coming up from the bottom to the iris too. Slowly getting worse and worse unfortunately for me ....

I have both red haze and individual red veins. Red haze on the visible areas of the sclera and some very thick almost purple individual veins at the top and bottom of my eyeballs, it is very grim....

[MGD1701]

Hi Jm

Plugs make the inflammation worsen as they keep toxic tears.

Lipiflow did help me but only found real relief after using NatraSan spray (with pure HOCL like Avenova) I have found, on the 3rd attempt, although all +10 doctors said I did not have inflammation.

BlephEx, tea tree oil (for demodex, which likely your case given rosacea) and pure HOCL to control bacteria overgrow (more info - please read my various posts on 'NatraSan' spray, made in UK, which I have been using more than 1.5 years ago) should help you.

Keep the inflammation under control is the key. Think positively and dont give up as you still have hope. Good luck!

[Dryinvancity]

He said the oils aren't bad but now theres a problem with the aqueous layer. Inflammation in the eye still 'severe'. He put 2 temporary punctual plugs in. He's also put me back on FML (which I've used 100 times to no effect and been on far stronger steroids to no effect) and flaxseed oil. I'm going to have the 4th in a month but just lost all confidence, I actually spent thousands on this and it just got worse. I now have no job, no money and no life.

Be patient...it takes time...I was in nasty shape a few months ago but am slowly healing each day. I work from home now and hope to get back to working in the office at least part time soon.

I find that when I use steroid drops I feel worse...probably because of the BAK in them...oddly enough they can dry your eyes out and cause inflammation.

Have you changed your diet? You may need to look at adopting an antiinflammatory diet to combat the rosacea (no alcohol, caffeine, spicy food, or sugar...lots of vegetables) and drink lots of water.

[jm95dryeye]

Hi Jm

Plugs make the inflammation worsen as they keep toxic tears.

Lipiflow did help me but only found real relief after using NatraSan spray (with pure HOCL like Avenova) I have found, on the 3rd attempt, although all +10 doctors said I did not have inflammation.

BlephEx, tea tree oil (for demodex, which likely your case given rosacea) and pure HOCL to control bacteria overgrow (more info - please read my various posts on 'NatraSan' spray, made in UK, which I have been using more than 1.5 years ago) should help you.

Keep the inflammation under control is the key. Think positively and dont give up as you still have hope. Good luck!

There's conflicting evidence online re plugs making inflammation worse, and this guy is a top ophthalmologist and considered a leader in the field of dry eye. So why would he put them in.

Thanks for the recommendation of Natra spray, but the amount of money i've spent on people recommending me alternative products on here (latest being castor oil, made things worse) i think ill pass. I've just got to put hope in my ophthalmologist.

My last resort would be sclerals. Anyone london based recommend where to get these fitted?

[Guest]

jm95dryeye I wouldn't trust Hamada's opinion of your oil layer. He said mine looked great when it was down at 40 on the lipiview machine.

[MGD1701]

Hi Guest, thanks for sharing, although I dont know this doctor in UK.