Starting FML today, with a heavy heart

[unicorn]

I was prescribed FML steroid drops last Friday by an ophthalmologist in whom I have very little trust (see other thread!)

Today I went to see my GP to discuss my concerns about all this, in particular the use of the steroid drop which contains preservatives, to which I believe I may be sensitive or allergic.

He tried to allay my fears by saying that FML is a 'weak' steroid and it is not uncommon to be on it for several weeks - despite the label saying not to use it for more than a week without supervision by a doctor (he indicated this is merely the drug company trying to cover its own back). He said my eyes are very inflamed and seemed to be of the opinion that without having a proven allergy to BAK, I should use the drop for now and speak to my opticians (appointment in 2 weeks) about my concerns.

Regarding getting a referral to someone more specialised in ocular surface disorders for a second opinion, he is again leaving that up to the opticians to sort out, so I'm going to have to wait, once again.

Feeling very anxious about it all. My eyes are red and inflamed, not quite as sore as they were a month or so ago, although it varies day to day and they are still very dry at times. I will see how the steroids do. The one thing I am reading about is the rebound effect if you stop them too abruptly and I really don't know anything about this. I suppose now I've started I'll have to keep going and just see what happens, for two weeks anyway.

Scary

[irish eyes]

The rebound effect just means that you have to taper them off gradually.

There should be instructions on the prescription label on how to use them e.g. 5 times a day for 7 days, then 3 times a day for 5 days etc. until you are on one drop a day and then zero. You get the gist.

It's more important not to stop abruptly if you have been on a really heavy dose. (I used to get a lot of episodes of iritis - inflammation of the iris - and I had no choice but to use high potency steroids at frequent intervals.)

Try not to feel anxious.

[unicorn]

Thanks Irish eyes. There are no instructions on the label about tapering them, nor did the ophth say anything about this (hardly surprising given his disinterest) - it's only something I've read about on here, and elsewhere on the net. I'm going to ask my opticians specifically about this when I see them in 2 weeks. If in the meantime I get any adverse reactions I'll have to try and see someone more urgently.

Am trying hard to not feel so anxious - just went for a good long walk, which helps. I've been constantly so close to tears for a few days now, and have cried quite a few times - which makes my eyes a whole, whole lot worse for ages

[irish eyes]

Presumably you have been advised how many drops to be used each day and at what intervals? Tapering them should be discussed at some stage; maybe your next meeting with the ophthalmologist.

[unicorn]

Nothing other than 'twice a day ... review in 6 weeks'

Yes, not very helpful!

[littlemermaid]

Unicorn, Please don't worry, it's fine on FML for a bit and it could reduce your inflammation so you can gently get the MGs going, which is pretty much what any ophth would do. We've had to use it for years and stronger steroids, tho' not as much as Irish and others here, and now we're joyfully down to 2/week unless there's flareups.

I'm told it stays on the eye surface without absorption because fluoride binds to the tear film. If you are worried about any systemic absorption down the tear ducts, close the puncta by pressing gently in the inner eye corners for a bit after you've put the drops in. Wipe off any excess from around the eyes and a good job's done.

We're all suffering from too much information these days, in some ways. This is the stuff widely used as safest for babies and children with eye inflammation. There's a few steroids without preservatives but the profiles are maybe not as good. Every doc has a different idea of tapering but he'll tell you what step-down he likes. Several top ophth have told me our ophth 2 was wrong and we didn't have rebound and I think they're probably right - it was a flareup of untreated keratitis from mgd.

Any discomfort or problems, it means 'phoning up the Eye Clinic for someone to have a look - it's nice to meet the rest of the team too because there might be someone there you prefer and can ask for your follow-up appointment with.

You had frothy tear film - did he prescribe any antibacterials? or are you doing well on warm compress? No contact lenses on FML, of course, no matter how better the eyes feel!

[unicorn]

Thank you, that's very reassuring! I agree - too much information can sometimes be a bad thing can't it?

I tried closing the puncta by pressing in the corners of my eyes after putting in the drops, but could still taste it a bit later, so need to practice my technique there I think.

No antibacterials were prescribed. Yes, tear film frothy I think, quite often seeing small bubbles in between blinks - but meibom seems clear-ish, or at least I'm not seeing anything thick or yellow-y coming out. I am wondering whether to actually stop the warm compress for a short while (while continuing with other lid hygiene methods) because they really seem to be adding to the inflammation - a bit of a Catch 22 here I feel, sometimes. Maybe I'm wrong in this, really don't know.

No contacts for the foreseeable future but I can live with that, just really hoping for some, any, improvement. Need to get some prescription sunglasses sorted, though!

[littlemermaid]

Just while you're feeling more cheerful - maybe if you're going back to DC to have your eye pressures checked within a week of starting a steroid, ask him to have a very very good look to make sure you haven't caught a bug off contact lens solutions. If he suspects anything, it would be off the FML pronto (haven't had it long enough to worry about tapering) and straight back to one of Mr Rude's more professional colleagues for examination and swab so they can have the pleasure of pointing out his mistake. If he's like that with patients, imagine what a * he is to work with.

It's very very good news that your eyes have been feeling better. It's so cringingly uncomfortable talking about this on the internet when there are current, supportive docs and optometrists out there to help us manage the eyes together - but it's finding the skilled ones that's the trick.

This is a very good summary eye treatment leaflet from Fife http://www.fifeadtc.scot.nhs.uk/form.../11%20Eyes.pdf

Are you comfortable with your tear substitute drops?

[unicorn]

I'm not going back to DC (he's two train journeys, nearly 2 hours away from me) but will be going to another practice five minutes down the road (who I think are very good, having chatted to them on several occasions so far - they have the added benefit of knowing the local docs/ophths).

Woke up to very, very red eyes this morning despite them having looked quite a bit better during the day yesterday after instilling the FML.

I didn't use any of the tear substitutes yesterday, didn't really need them. Have been ok on Clinitas recently, not using them very often though. They sting very, very slightly when I put them in.

I laughed at your description of Mr Rude. I'll remember that; it'll help me take him less seriously...!

[littlemermaid]

Excellent plan!

The problem we found with FML was that it suppresses inflammation just great when needed but obviously doesn't fix the cause, as we know. If it was us, we'd be using tear substitute drops to help the eye surface to heal itself meanwhile. Our problem is chemical sensitivity to the normal drops, although we did well on Celluvisc for a bit. We are doing super-well now on normal saline 0.9% vials either prescription or pharmacist but have to remember to put them in regularly because the eye surface is desensitised.

I'm thinking underneath your eyelids might be cherry-red? Can you get down to the optometrist for them to have a look and see why it's worse on FML? Very interested to hear what your new optoms will think and whether you're happy thinking about this with them. What a relief that these guys are getting trained up to help us now. Things have changed so much these last 2/3 years.

Sometimes Dr L says to stop all drops and use cool compress when he sees allergy but we wouldn't give up saline in case the surface gets damaged. In our case we need steroid for control sometimes or there's damage, but we get same-day improvement then wean off in one week steps similar to IrishEyes.

Do you think your eyes were starting to heal themselves after stopping contact lenses and before the FML?

[unicorn]

Do you think your eyes were starting to heal themselves after stopping contact lenses and before the FML?

Good question. Actually, no, I don't think they were. It would be great if it were that simple. Although I suppose it's possible that if I'm sensitive to other drops (even without preservatives), then it would be hard to tell, since I've been using them (TheraTears, Clinitas Soothe, now Vismed) in the meantime.

Yesterday my eyes didn't respond as well to FML as the first day I used it - they stayed slightly red all day, although the underside of my lids improved from bright red first thing to relatively pale by evening. This morning eyes and under eyelids bright red again.

Not really sure what to do now, thinking of maybe trying to get seen by the optom soon though.

EDIT: Just phoned the opticians, being seen at 1.15.

[unicorn]

Ok, just back from opticians - quite a thorough check, including my first ever lissamine green experience!

He said corneas are very healthy with no sign of SPK which he might expect from an allergic reaction. However, conjuctiva very inflamed and showing signs of possible irritant/allergic reaction. Confirmed very short TBUT due to insufficient lipid layer.

He's advised me to stop the FML for now and suggested the use of TheraTears liquid gel to calm things down. Had a chat about referral to a more appropriate ophthalmologist - basically seems like it'll take a couple of months if I go through the NHS or can be as soon as a couple of days if I go private, however he wasn't sure if I could get follow-up NHS if I went down this route.

I've phoned the hospital, spoken to Mr Rude's secretary (!) and explained the situation; she's going to get back to me tomorrow. If I can get to see him again soon-ish I may try and politely request that he passes me on to one of his colleagues with a special interest in ocular surface disorders. Not sure if that'll work but got to be worth a shot.