FML drops. Been prescribed but concerned about glaucoma & the BAK preservative.

[CharlieGreenEyes]

Just looking for some advice.....

After being dismissed each time I went to my previous eye hospital, I found a new one. My TBUT is now 0-1 in my worse eye. This makes sense because I've struggling so badly for a few months now with more pain than ever before.

I have MGD with glands in a very bad way apparently, lots of inflammation, and several corneal abrasions. I've been prescribed FML drops to take for 4 weeks (tapering down each week).

I'm nervous about using the steroid drops. I know the risk is still very low but I have high myopia (around -10), which I know increases glaucoma risk. I also had eye pressure of 21 a few months ago. It had gone down to 14 by the time I saw the new opthalmologist. I'm also nervous about the BAK content. I'm terrified these drops will make the dryness worse. I used BAK content drops a few months ago in desperation when I ran out of my usual drops after the shops had shut. My eyes were much more painful for a few weeks after that.

What are your experiences of short-term FML use? All experiences would be so helpful to hear about.

From what I understand Ikvervis takes a long time to work - but if it's less risky than FML, I'm wondering about asking for this instead?

[MGD1701]

Hi CharlieGreenEye

I have MGD but not often with inflammation. Dr never gave me FML nor Ikvervis.

my understanding (based on my daily research, as all 12 doctors I visited - only 3 pressed/checked my glands.

1) is it is important to put inflammation under control (Omeg 3, lidhygiene product with HOCI or tea tree oil should help - to avoid bacteria/demodex).
2) Restasis/Ikervis should be a better solution - some take 1 month, but mostly takes 3 months for patients to feel.

[CharlieGreenEyes]

Hi MGD1701 - and thanks.

As usual when I leave an opthal I'm not clear exactly what's wrong with my eyes. I'm not sure what's inflammed - my corneas and/or my glands. I was told my corneas are too damaged right now to be looked at properly (and for me to have an accurate vision test) so I assumed the FML is to heal these?

I think I need to contact the opthal - and perhaps ask for ikervis. I've already been taking Omega 3, doing the lid hygiene, etc for a couple of years - although I haven't yet tried scrubs with tea tree oil so I'll do that.

[MGD1701]

Hi CharlieGreenEyes
Good to find out WHAT cause inflammation. there could be a few reasons.
Have you examined eyes by confocal microscopewhich can detect more info on MGD or demodex (or even corneal nerve?)
Lid hygiene: for Bacterial Burden Hypochlorous Acid HOCI (Avenova or Ocusoft Hypochlor) is effective/safe.

Did you check your Vit. D, Vit A etc.?

Warm compress: I assume you do this too? I find wet heat is effective/safe - can remove debris, bacteria, dusts etc.

Cornea: do you have erosion? I had it often before, but not anymore - had PTK laser.

[CharlieGreenEyes]

Hi. I've got no idea what tests were done. Did have a few and I'll get a report in a few weeks, which will hopefully explain more.

Do the compresses. Used flannels and now back to the eyebag. Doesn't seem to get any oil from my eyes - but does feel soothing so I keep it up. For scrubs, I use Blephaclean or Blephagel sometimes but money can be tight - can't work full-time since the eyes got worse. When I'm saving money, I use diluted baby shampoo.

Had lots of blood tests. Not for A though so I'll ask my doctor. I'm low in iron so starting iron pills - hopefully this will help my eyes.

Not sure about erosions. I have several corneal abrasions - and have had this before so thinking it might be RCE. I forgot to ask so I'll contact the doc to see what he thinks.

I can't read through everything here with the dryness, but saw you mention sclerals in another post. I'm also wanting to try these. Especially because I have a complex vision prescription, which is only properly corrected by contacts (use rigid gas permeables when I'm able to) and it's difficult getting by with my glasses. I want to have these on the NHS because I'm not sure I can afford the private fees (I did find a few optometrists within travelling distance to me that do it). I've been told this might be an option but they want me to wait and try the steroids and more compresses first. I guess they just try to put you off and hope you stop asking....!

[MGD1701]

Hi
Baby shampoo - do NOT use it. it is really bad for eyes.

Goji Berry has rich iron (more than beef), vit. A (more than orange) and Vit. C (more than orange) and very good for anti-inflmmation too.
Buy bio as mostly they are from China. You can get it in supermarket, I think. about 15pcs daily with 250cc hot water + camillen - just alone is not effective.

omeg 3. just eat nuts/seeds with salad or their oils for cooking etc that is cheaper and safer. My omeg 3 is almost double than normal.

Blephaclean is not so effective for bacteria. I found this (good price) with HOCI - and have tried it - ok for me.
Vital Baby Aquaint Sanitising Water, from UK
A revolutionary 100% Natural Cleansing water that kills 99.9% of bacteria in seconds.

Did you check if you are partial blinking? if so, blinking exercise helps.

Vit. D - if you use sunblok (like me) and do not often expose to sun, good to check. My Vit. D is very low.

massage: I squeeze as some doctors (including Dr Korb) recommend it in order not to damage cornea.

[DryInDenver]

There is an ointment version of FML that does not have BAK in it. It was much more expendive for me, but I keep it around and use it sparingly once a month or so when my eyes are worse than normal. I feel like it helps me calm the inflammation and break the inflammation-irritation cycle (I have LASIK induced dry eye). You might ask you doc if you can get a prescription for that instead.

[Hokucat]

Yes, good idea to get non-BAK like DryInDenver suggests. If you cannot afford it, or in the meantime, about 20-30 minutes after using your current FML with BAK, you may want to rinse your eyes with preservative-free saline...Purilens or other small vials are available in The Dry Eye Shop here. When I was using BAK drops and was concerned about it making my dry eyes worse, my eye doctor agreed 20-30 minutes would be enough time to get the benefit of the drop while limiting the BAK impact.

https://www.dryeyeshop.com/mobile/pr...ines-c162.aspx

Good to consider sclerals. I wear my sclerals 12+ hours a day, and it helps me do things like reading, using electronic devices, driving, watching TV, etc. more comfortably and longer than if I did not have them. Not everyone can tolerate them, but if you can, it could also reduce the corneal erosions/abrasions since the edges sit on the white/sclera part of the eye vs. the cornea, while the dome shape bathes the cornea in saline, like having eye drops that stay on your eyes all day. You might be able to tolerate sclerals better than others since you have worn RGP contacts. FYI, there was a point where my eyes were so severely dry when I had zero tear film, and 0-1 TBUT like you that I could not wear my sclerals for several years until I got a little better.

In the end, what really helped my MGD was probing to unblock my glands since I had scar tissue, and drinking fresh lemon juice in green tea 2x daily to my already healthy diet to change my oils from thick to flowing, so my glands didn't get blocked up again. So the key is to unblock your glands otherwise likely no treatment will help, and then try to find diet changes or other treatments that can help your oils flow. The sclerals help with remaining dryness I have from some glands that were loss/atrophied.

Ok, hope you get some relief soon.

[CharlieGreenEyes]

Thanks for all the advice above.

I'm in the UK so first choice is getting the prescription on the NHS. Not sure if the PF ointment is available on the NHS or even at all in the UK but it's worth asking. Someone also told me about prednisone so I'll ask about that too. And if not, I'll get the saline like Purilens, thanks so much for the info.

I'm getting desperate to get sclerals. I see them as my best option. More for my vision than the dry eyes. Without my rgp contacts it's a real struggle as glasses don't work properly for my vision. But it sounds like they'd also really help my dry eyes too.

Hokucat, your experiences with sclerals has reassured me that perhaps my new opth isn't just ignoring my situation. I felt so frustrated because the opth didn't refer me for sclerals straight away (and it's now been several years of these eys problems) but he did seem open to doing so at a later stage. I guess if you couldn't tolerate them when your TBUT was the same as mine (0-1), the same would apply to me. Guessing he wants me to wait until my eyes are less damaged. It's just hard being patient when it affects my life so much. I should ask about probing - I've not heard much about this. He did mention lipiflow and ipl for a future stage so perhaps he also knows about probing.

MGD1701, thanks for the advice. I'm vegetarian and perhaps this is why my iron is low. I'll try your goji berry suggestion. Vitamin D is fine (I'm actually high normal) but was low. I started taking a high dose supplement and it seems to have worked. Don't know if you've tried any supplements? I use one with 1000iu (25ug) D3. I eat a lot of nuts and seeds so hopefully my omega 3 is good and I don't need a supplement too (but I'll keep taking it for now just in case).

[MGD1701]

Hi CharlieGreenEye

Vit. D: Dr recommended 20,000 i.e. 1pc/time, twice/week - I asked him if it would be better if I take small dose for each day. He does not think so. What do you think?

BlephEx: Do you know it is not only cleaning lashes but lid margin which can smooth surface then tear can distribute better.
Good to consult your dr and it is not so expensive.

Baby shampoo is really bad, especially if your eyes are inflammed.
Doctors who recommend it are really not up-to-dated.

Inflammation: Do you know the causes? bacteria or glands too clogged or ....
If bacteria - the best is lid hygiene with HOCI. if demodex - with tea tree oil.
Better put this under control ASAP to avoid more damage to glands.
If you can identify causes and deal with them AT THE SAME TIME, then you could achieve more.

[Hokucat]

Hi Charlie. If you get an opportunity to at least go for a scleral consult, you will likely be able to try on trial lenses to see if you can tolerate them, and if they make your eyes feel better. A good scleral specialist can usually determine whether you are a good candidate for sclerals at the consult, and if you're not, you would NOT be on the hook to go through the fitting process or get sclerals at that time, which is the major part of the cost and time involved.

You may be able to wear sclerals despite your 0-1 TBUT, and not necessarily be like me when I couldn't wear them for a period. There are other factors like your tear film, condition of the surface of your eyes including your sclera the lenses will sit on, etc. that can impact your ability to wear them. I just didn't want you to be disappointed if you cannot tolerate them the first time you try them on! It can work later as the condition of your eye improves.

Often ophthalmologists do not suggest sclerals until most other less expensive options are tried, but that's changing, and the cost of sclerals has been going down as more local optometrists are fitting sclerals. Resolution to the underlying problem causing MGD should still be pursued, but sclerals could help provide immediate relief and comfort to get functionality and some of your life back, which is also important. I did a lot of research on sclerals, which I think helped convince my doctor when I told him I really wanted to pursue it.

[CharlieGreenEyes]

Hi MGD1701, I don't know for sure what's best with getting your vit d up - but perhaps it's like with low iron. My iron is low and I've been told I'll need to take more in than the usual dose (if you aren't already low) in order to get it back to normal. If that makes sense (my eyes are sore today so it's a harder day to use computers).

I'm guessing perhaps you take the super-high does initially to bring your vit D up and then perhaps go on to a lower maintenance dose. My D was low a few years ago and although it's now fine, I still take the lower (1000) dose everyday.

Don't know for sure what caused my inflammation - but think it's my corneas that are inflammed more/as well as my eyelids. Think due to glands being clogged. I can't seem to get any oil out of one eye (after compress and massage). The other eye glands must be slightly less clogged because I do get oil out. I'm almost resigned to the possibility that my bad eye has already got damaged beyond repair glands (hope not but it's not looking good).

Thanks for the blephex suggestion. I'll look into that.

Hokucat - hi too, and thanks for the suggestion and advice.

I don't know if any UK optometrists offer trials. I'll tried to have a look online for one that fits them and found one about two hours away from me. Not sure if they offer a trial but I'll ask. I'm hoping I can tolerate them because I'm desperate for functional vision! But I suppose I'll have to be prepared for a wait as it seems from what I was told that my eyes are in a pretty bad way so perhaps I do need to wait until they heal a bit.

[Hokucat]

Hi Charlie. I should have clarified you usually try on the trial lens as part of the consult, for just an hour or so. During that time you can try doing things that may typically bother your eyes, like looking at your phone, reading, walking around outside, etc. to see it helps and if it seems you can tolerate the lenses.

[CharlieGreenEyes]

Thanks, Hokucat - your experience/advice is appreciated. I'm not sure what I'm going to do right now but I'm getting desperate for everyday functional vision!

The optometrist I found fairly close to me apparently do corneoscleral lenses (according to their website) but I've read a few threads here that suggest the UK doesn't really have any experienced fitters except Moorfields. I've made an appointment for a few weeks time anyway in the hope they might be able to help (I have no way of affording them privately so if they do help, I'll need to beg the NHS to fund them, which won't be fun!).

I'm hoping I won't need Moorfields because I didn't have good experiences with them, and I also suspect I'd be in for a very long wait - and I'm running out of patience. It's like being in prison some days when my vision is too poor to do anything.

[Hokucat]

Hi Charlie. I know what you mean by feeling like you're in "prison" with how bad your eyes are. I was home bound for several years at my worst.

I'm in the US, so don't know how the NHS works in the UK, but from reading posts from UK folks in this forum, it sounds so difficult to get higher end treatments like sclerals there. They likely will have you try other treatments first, which may or may not help, but guess they can't just jump to sclerals for every patient that asks for them, IF there's a chance something less costly might help. Perhaps reach out to people in this forum who have gone through or are going through the NHS process to get some advice...you could start a new thread entitled something like "Experiences getting sclerals in UK through NHS?". Or do a search in this forum to find people who have posted in the past about this, if you have not already.

I've also heard sclerals are available at the Oxford NHS eye hospital from PhoenixEyes. You might want to connect with him/her, as he/she is also considering sclerals at Moorfields and is a quite knowledgeable person who does extensive research.

http://www.ouh.nhs.uk/eye-hospital/d...ct-lenses.aspx

Also, below wanted to share a post where I identified what key factors helped me overcome my MGD and severe dry eyes, in case there's something there that might help you. Hang in there, Charlie. I will keep you in my thoughts and prayers.

http://www.dryeyezone.com/talk/forum...ccumulate-info