how to control inflammation if steroids don't do much?

[poppy]

I don't see what else I can do if months of steroids can't get my inflammation under control (at least for a while)? I have been on steroids for 3 months, started with FML and when that only helped a little pred drops (preservative free) 4x a day. Whilst I'm taking the steroids 4x a day my eyes are bearable but it's not bringing the inflammation under control and my eyes continue to worsen (ie the steroids are helping less and less).

I don't see what options I have. Without the steroids I could not function, even if I try cutting back on them I get such bad photophobia that I cannot function even indoors in low light (my eyes don't want to open, sometimes I have to hold them open to see). The pain I can usually deal with as most of the time it doesn't force my eyes closed so I can still see.

I would like to know if any other members have been able to control inflammation like mine (eg significant keratitis and conjunctivitis as observed by the eye doc) when steroids failed to get things under control even temporarily. For example if I can't bring inflammation under control there is no option of trying punctal plugs. Hope someone can offer some hope for me.

[littlemermaid]

Hello, Poppy ~ this is sounding all too familiar. What are their current thoughts on diagnosis and treatment? What drops you on? What measures you taking at home?

[indrep]

Poppy
According to the DEWS report printed in April of 2007 the environment that creates inflammation is hyperosmolarity of the tear film. In simple terms it means the tear film does not have enough water to neutralize the amount of salt in it. This creates what is known as a hypertonic tear film. The tears then pull water from the epithelial cells, killing them. This creates an unstable ocular surface further exacerbating the issues.

Punctal occlusion helps keep more water on the ocular surface, lowering the osmolarity and reducing the environment that creates inflammation.

[PotatoCakes]

Poppy
the tear film does not have enough water to neutralize the amount of salt in it.

This could be a completely stupid question but has anyone tried a low/no salt diet to lower inflammation? I love salt. LOVE. But if anyone has tried a low/no salt diet with success, I'd be willing to try it.

[alisonW]

re: no/low salt diet...

PotatoCakes - I eat a very low salt diet and still have all the eye problems and inflammation unfortunately.

[littlemermaid]

Poppy - to repeat indrep, are they saying you can't have plugs? sounds like inflammation is conjunctiva generally rather than bacterial isn't it? Just been talking to someone UK who had 60% improvement on plugs immediately.

if I can't bring inflammation under control there is no option of trying punctal plugs

[Tankie]

Get your eyes tested to make sure they are closing properly. You don't even need a professional, just sit down on a couch beside someone, close your eyes for a full minute in a NATURAL way (that is, don't squeeze them any tighter than you normally would) and ask them if they can see even the tiniest opening.

It's important that the person helping you looks VERY closely because the opening can be very subtle.

Also, ask the person if your eyes appear to be vibrating, it may mean your muscles are weak if they are.



If you have any concerns about your eyes not closing properly, then seek the advice of a professional (plus you can always ask us on DEZ).

[poppy]

Hello, Poppy ~ this is sounding all too familiar. What are their current thoughts on diagnosis and treatment? What drops you on? What measures you taking at home?

They think it could be a combination of ocular rosacea and incomplete lid closure. I no longer have much faith in this as a) the diagnosis of ocular rosacea seemed to be based purely on me agreeing that my face went a bit red when I ate spicy food etc and b) I have tried just about everything that could be useful for exposure, ointments at night, goggles at night, humidifiers, I even spent a month in a tropical very humid country and it helps not one bit.

At home I do lid hygiene and genteal gel. These are the only things I've found that help at all, but they do not stop my eyes getting steadily worse even using genteal every 10-15 minutes at times.

Their treatment plan, I believe, is to throw more and more steroids at me and then dump me when I get some small temporary improvement. Although, they have tried doxy for 3 months. I would like them to do a swab test but I'm afraid to ask having been verbally abused for asking for things by other eye docs in the past. Once I took a short course of antibiotics (amoxycillin, might not be correct spelling) for another problem and my eyes went 100% perfect for a short time. Maybe it was a coincidence but I always wonder - perhaps I have something that can be cured with the right antibiotics if only they would actually test for an infection.

[littlemermaid]

Poppy:

Is the inflammation definitely just conjunctiva and epithelial?

Can you pay private ophth for a swab test investigation, like ColinP did? Any chance another GP would do it eg 'I'm here to ask for your advice, ophth treatment not working, unresolved unidentified MGD' approach? (worked for us a few times, they like that)

Also wondering whether you can see meibom on lid line after warm shower or compress, 2 fingers pressing gently under lash line?

Any chance of eg optometrist giving you info about tear break-up time, state of tear on eye surface, Schirmer test?

Are you continuing oral antibiotics for 'ocular rosacea', understand it takes a while? For LM, ocular rosacea means reactive skin rather than flush.

See posts by jads in Melbourne?

I think preserved steroid drops LM used during year 1 deteriorated eye surface, reduced tear response, worsening spiral, but it's difficult to reduce without general improvement, and I haven't found any PF in UK. Lid hygiene products and poking about with cotton buds inflames her eyes so we stick to warm water cotton wool and warm compress. This is the skill of our current doc, he is sensitive to tapering interventions like steroid and antibacterial drops to give the eyes opportunity to heal. She still uses Celluvisc all day every day to maintain tear film and surface, as indrep says, flush any problems. Yeh, I know he hasn't fixed it but life is better and I can work with this one. Got dumped and fobbed off many times before I found him and he took us in.

Is there any mileage in talking to Patient Liaison and, through them, asking hospital for a review of treatment so you know where you are? That's pretty much what I did recently. I think you are entitled to request notes to discuss with doc.

Anything useful here? International-workshop-on-meibomian-gland-dysfunction March 2011

[LaDiva]

Hi Poppy,
I have ocular rosacea, and went to five eye doctors before it was diagnosed. The diagnosis was no surprise, as I have an inactive case of facial rosacea as well. Apparently ocular and facial rosacea can work independently, with one flaring and the other not. I found that steroids did little for the inflammation, and was only on them for a week. I am now using Azasite, taking Doxy(two months now) and getting IPL treatments (have had one). The inflammation has gone down considerably, but I have also started using TheraTears regularly and am being careful about glutens, spicy food, heat and alcohol. Am steaming, expressing and scrubbing three times a day. Ocular rosacea is new to me, but the facial rosacea is not. My experience with facial is that once it is calmed and treated regularly with an antibiotic, I rarely have any problems. Hope this is true for ocular too. All of the doctors have told me to use eye drops, but not one has told me why, and so I cut back in error. They do help inflammation by stabilizing the tear quality. You've got to find the right one for you though. Good luck to you. It is the pits, I know.

[neve]

Any doc that is verbally abusive to me for asking a question regarding a potentially helpful test becomes one thing to me...an ex-doc. No one deserves to be treated like this. I would never put up with being abused or made to feel as tho I was being unreasonable or asking for something out of the ordinary. Not acceptable and don't ever be afraid to advocate for yourself.

Neve