IPL - chronic inflammation

[Alix]

So I had my first IPL last week and had my glands manually expressed afterwards. All my lower glands produced lots of thin clear oil - it was spurting out and streaming down my face like tears. Most of the glands in my upper eyelids have atrophied, but the ones that are left were also expressing thin clear oil.

I think this means I do not have blocked glands. The first eye doctor I saw earlier this year diagnosed me with chronic inflammation not dry eye, I am now thinking maybe he was right?

I know I am a partial blinker, so I am now thinking that the constant burning sensation is due to sensitised nerves as a result of lack of oil - as my eyelids are not touching, the glands are not being stimulated.

I am wondering if anyone else had abundant clear oil expressed after their first IPL session? I am wondering if there is any point having another (expensive) session if I don't have blocked glands.

Any thoughts would be highly appreciated.

[MGD1701]

Thanks for sharing great news.

If blockage is removed and oil is clear, dont think another IPL is required.
Wha did your doctor say then?

Oil quality was clear ''before'' IPL too? - just hard to believe that only one IPL has such effect.
Doxy (and steriod?), how long have you taken it/them?

So now you feel great, no more buring?

[Alix]

Thanks for sharing great news.

If blockage is removed and oil is clear, dont think another IPL is required.
Wha did your doctor say then?

Oil quality was clear ''before'' IPL too?
Doxy (and steriod?), how long you have taken it/them?

You are the 1st person in the forum I know with such great succes - only one IPL. congratulations
So now you feel great, no more buring?

Thank you. It's not great news really because my eyes are still the same - still constantly burning unfortunately, so the IPL didn't help in that regard.
It was the first time I had my glands manually expressed so I am not sure if the oil was clear before but I now know my glands are capable of expressing oil, it's just that they don't because of my partial blinking.

The doctor told me to go through with the full course of IPL but I suppose they would because it is a money spinner.

I used doxy for one month but stopped before the IPL. I think it may have been starting to help with the inflammation so I could go back on that if I don't do any more IPL, though I am not happy about taking antibiotics long term.

I am unsure what to do next. I have started using Ikervis, which I am hoping will help with the inflammation (I do not have aqueous deficiency), but am afraid that since I am a partial blinker whatever I do isn't going to work.

My TBUT has never been above 1.

[MGD1701]

sorry that your buring is still there. what did doctor comment on this then?

Blockage is only one elements, there are other issues, cornea (seems more related to burning?), conjunctiva, allergy or even blinking pattern etc.

Ikervis
I wont stop, if I were you, unless it brings you discomfort. Worth trying. I think it is safer than doxy??

TBUT 1 is pretty low but non-invastive is more objective, I have read.
Did doctor recommend something to improve it? My doctor just suggests oil-based drops.
What are your lipid layer thickness? seems they are somehow related?

Did you manage to get an objective diagnose, after visting so many (8?) doctors?

[Alix]

sorry that your buring is still there. what did doctor comment on this then?

Blockage is only one elements, there are other issues, cornea (seems more related to burning?), conjunctiva, allergy or even blinking pattern etc.

Ikervis
I wont stop, if I were you, unless it brings you discomfort. Worth trying. I think it is safer than doxy??

TBUT 1 is pretty low but non-invastive is more objective, I have read.
Did doctor recommend something to improve it? My doctor just suggests oil-based drops.
What are your lipid layer thickness? seems they are somehow related?

Did you manage to get an objective diagnose, after visting so many (8?) doctors?

My next appointment with the doctor is in a couple of week's time.
I've only just started on Ikervis, I need to take this for a couple of months to see any effect apparently.

The most coherent diagnosis I have received is that I have evaporative dry eye due to loss of glands in my upper eyelids as a result of contact lens use/partial blinking. However none of the eye drops I have used have been of any help, including oil based ones, which leads me to believe my main issue is inflammation.

As most of the glands in my upper eyelids have atrophied, I am not sure there is any point carrying on with IPL.
The glands that are left there and in my lower eyelids are producing "normal" oil. Nothing is coming out from the atrophied ones.

Lipid layer thickness is poor, it is not spreading over my eyes each time I blink as I am a partial blinker.

I have tried blinking exercises but it is too late now as nothing will ever come out of the glands which have atrophied.

[MGD1701]

If you dont have inflammation, you may not need ikervis?? Wise to make sure your triggers first.
Could be several reasons for burning (toxicity from too many drops maybe too??, when one has CCH/folds tear can not spread evenly too, also debridement can help tear spread evenly).

Did doctors perform both stainings: fluorescein & lissamine green?
Only 1-2 doctors did both for me. Many experts in USA consider both are imporant
because some have tremendous on conjunctiva but no problem in cornea.

Did you take steroid prior to doxy, IPL?

Did you take MMP-9 test for inflammation level?
my doctor says it can detect more things. But even negative, most experts in USA still treat the inflammation - I like such mindset.

[Meibum Ian]

Upper glands atrophied - was this confirmed with a meibography?

[Guest]

Alix did you have a lipiview to tell how thick your lipid layer is? I was told by one guy my oil was almost perfect then had a scan and it was only '30' and highly blocked...it usually takes three tries for ipl to work as well so if you can afford three that's best.

Also are you sure you could have so much oil that it streamed down your face? Are you sure that wasn't reflex tearing? I definitely get that when my glands are squeezed. If you look at normal glands being expressed the oil part is only tiny droplets.

[Alix]

Thank you everybody for your feedback it is much appreciated.

@MGD1701 I definitely have inflammation, my eyes are constantly bloodshot and burning. They burn regardless of whether I use eye drops or not.
I understand Ikervis is supposed to help with inflammation, though it is not doing anything so far.
I confirm doctors have performed both types of staining and have found dry spots but "nothing serious" i.e. cracks or "sight threatening".
I did use steroid eye drops before, FML and preservative free ones, they didn't really do anything to calm down the inflammation.
I have not been tested for MMP9. I have seen this term on this forum before but am not sure what this is, in any case none of the doctors I have seen have mentioned this kind of testing.

@Meibum Ian I had Lipiview done and saw on the screen that all the glands in my lower eye lids were there, but only 3 or 4 full ones in the upper eyelids. The rest were truncated, small stubs.
I do not know where I would get a meibography done here, perhaps if I got a private consultation at Moorfields? I've had about 10 NHS consultations, not once was meibography mentioned.

@Lena11 You could be right about the tears, but at the same time I was told the oil was thin and clear. Most of the doctors have told me that the quality of my lipids is poor and unstable.
I don't know what this means, maybe that the oil is too thin?

To be fair I was warned that IPL only has a 50% success rate so I was not expecting miracles but it is so frustrating that nothing is working for me.

I don't know what to do next, I believe the only thing that will help me now is new technology/medication which will regenerate atrophied glands but at the moment,
there is nothing that will bring them back to life.

[Guest]

Maybe try sclerals? If you don't have enough glands to keep your eyes from getting dry they seem like the best long term solution. The nhs ones from moorfeilds are pretty chunky and crazy huge, but privately I think someone in the midlands does eye print pro ones and they are super comfy and thin, not much worse than normal contacts.

[jack1988]

Thank you everybody for your feedback it is much appreciated.

@MGD1701 I definitely have inflammation, my eyes are constantly bloodshot and burning. They burn regardless of whether I use eye drops or not.
I understand Ikervis is supposed to help with inflammation, though it is not doing anything so far.
I confirm doctors have performed both types of staining and have found dry spots but "nothing serious" i.e. cracks or "sight threatening".
I did use steroid eye drops before, FML and preservative free ones, they didn't really do anything to calm down the inflammation.
I have not been tested for MMP9. I have seen this term on this forum before but am not sure what this is, in any case none of the doctors I have seen have mentioned this kind of testing.

@Meibum Ian I had Lipiview done and saw on the screen that all the glands in my lower eye lids were there, but only 3 or 4 full ones in the upper eyelids. The rest were truncated, small stubs.
I do not know where I would get a meibography done here, perhaps if I got a private consultation at Moorfields? I've had about 10 NHS consultations, not once was meibography mentioned.

@Lena11 You could be right about the tears, but at the same time I was told the oil was thin and clear. Most of the doctors have told me that the quality of my lipids is poor and unstable.
I don't know what this means, maybe that the oil is too thin?

To be fair I was warned that IPL only has a 50% success rate so I was not expecting miracles but it is so frustrating that nothing is working for me.

I don't know what to do next, I believe the only thing that will help me now is new technology/medication which will regenerate atrophied glands but at the moment,
there is nothing that will bring them back to life.

Hi, is lipiflow out of the question for you?

[MGD1701]

Restasis normally takes 2-3 months to see results while xiidra only as little as 2 weeks, I have read.

[Alix]

Hi, is lipiflow out of the question for you?

Hi all these treatments are expensive and not covered by the NHS or by my work private health insurance so I have to make some difficult choices. I decided to try IPL rather than Lipiflow as it is more effective as far as I understand.
If anyone has had any success with Lipiflow I would be interested to hear about it but I doubt it will help me.

[jack1988]

Hi all these treatments are expensive and not covered by the NHS so I have to make some difficult choices. I decided to try IPL rather than Lipiflow as it is more effective as far as I understand.
If anyone has had any success with it I would be interested to hear about it but I doubt it will help me.

i dont know what ipl does tbh

[Meibum Ian]

Thank you everybody for your feedback it is much appreciated.
@Meibum Ian I had Lipiview done and saw on the screen that all the glands in my lower eye lids were there, but only 3 or 4 full ones in the upper eyelids. The rest were truncated, small stubs.
I do not know where I would get a meibography done here, perhaps if I got a private consultation at Moorfields? I've had about 10 NHS consultations, not once was meibography mentioned.

Meibography is possible with lipiview, and it sounds like this is what you had.