Rebound inflammation from FML - help!

[britgirl]

Was put on FML 0.1% for inflamed veins in eyes. Have been using for about 1 week.

On the first day it reduced redness dramatically. However in the morning, I wake up and my eyes are more red and inflamed than usual. This is gradually getting worse and worse between FML doses.

I am considering tapering off the FML now because it seems to just be causing a load of rebound redness. Also I think my eyes are sensitive to the preservatives (BAC) in these drops which probably isn't helping.

Had anyone else had similar issues? Will the rebound redness fade on it's own? Is it possible to get preservative free FML?

I'm concerned as I am not seeing the doctor for another 5 weeks so will have to wait until then to get anything else.

[littlemermaid]

Increased inflammation on steroid

You can't wait. IOP needs checking, you need same-day advice on stopping/tapering the steroid. We had rebound coming off FML but not BAC reaction. 'Phone hospital emergency eye clinic, give them all the details 'increased inflammation on FML'. Urgent examination.

Alternatively, 'phone consultant's team in the morning. Sleep well, it'll be fine, but don't leave this. They prescribe it, they monitor it. Honestly, you will get used to working the system, but you need assessment same-day.

[irish eyes]

Britgirl

It may be nothing to worry about but I would contact someone about this anyway.

See if you can speak to the consultant - or at least get a message to him / her.

Be confident about doing this; I've had to do it frequently and my concerns have always been taken seriously.

You need to build up a `vocabulary' to describe signs & symptoms over the phone. Your message may be conveyed 2nd or 3rd hand before reaching the right person.

(By the way, I use a preservative free steroid)

[y-gwair]

Yes, I had a similar reaction (to maxidex, rather than FML); initially thought it was preservative reaction, repeated with preservative free version and the same thing happened. I tapered it off over about 3 days, ophth. said I did the right thing. Still no idea what the reaction was (definitely wasn't an IOP thing in my case), but agree you need to see someone asap in local eye emergency because of raise IOP risk.

[NeedMyEyes]

This is NOT steroid rebound

Just to be clear -

This is NOT rebound inflammation from steroids.

You get rebound after taking steroids for LOOONNNGGG time, at least a couple months, and then immediately stopping (without tapering).

You will get redness, inflammation, etc that is WORSE than what you had BEFORE taking the steroids.

You don't have rebound right now, because you have only been taking the FML for one week and you are still taking it. So this is NOT rebound.

It sounds like this an allergic reaction to the FML. You do NOT need to taper steroids if you have only been on them for a week. You can just stop "cold turkey" if you need to.

One more thing - I am NOT an eye doctor. I have given steroids to patients for other diseases and I know these things from those steroids (which are the same as eye steroids).

[britgirl]

Went to eye hospital walk-in. Waited 3.5 hours. Pressure was fine. Doctor didn't seem too bothered at all. He said 'your eyes are red because they are dry' and was about to prescribe celluvisc but I said no need, I have it on repeat. Told me to stay off FML.

Yes, I had a similar reaction (to maxidex, rather than FML); initially thought it was preservative reaction, repeated with preservative free version and the same thing happened. I tapered it off over about 3 days, ophth. said I did the right thing. Still no idea what the reaction was (definitely wasn't an IOP thing in my case), but agree you need to see someone asap in local eye emergency because of raise IOP risk.

How long did it take to go away?

I'm getting so frustrated! My eyes were pretty clear when the pain started - now everything I've been prescribed has made my eyes very red and veiny.

[britgirl]

hmm been a few days and it doesn't seem to be going down on its own. I've been using cold compresses & celluvisc. Still extremely red, inflamed and veiny.

Not sure whether to wait some more or book another private appointment...

[littlemermaid]

NeedMyEyes: Please would you clarify your medical credentials. We are confused what your qualifications to advise are. We had confirmed steroid rebound after FML td 5/52 + opd 1/52.

[NeedMyEyes]

littlemermaid: I'm not an eye doctor - I'm a radiologist. I don't see any patients in my daily practice. I used to practice internal medicine, but that was a long time ago. Any knowledge I have is general medical knowledge or information I have learned since being diagnosed with meibomian gland dysfuntion about 9 months ago.

I don't understand the part at the end of your post with the 52. I think you mean you were on steroids for a month? If you take steroids for a week or 2, you do not need to taper them. Any amount of time beyond that and I usually taper the patient's steroids. Like the poster above said. If you took steroids for a month, you could get rebound.

Further, if your eye doctor told you are having steroid rebound, then I am not going to contradict your doctor.

Oh, and there is a phenomenon with rosacea called steroid-induced rosacea. I don't know if that might be complicating your picture.

[littlemermaid]

I don't understand the part at the end of your post with the 52

Standard international prescription code.

Good to have a radiologist on board. Can you tell us which nerves cover the eye surface and how they relate to the maxillary sinus when there is pain in both? There are also a lot of people struggling with unexplained pain in orbit and jaw, but how do these nerves relate? This information is difficult for us to find and some links would be very valuable.

I am desperate to understand how CSF flow swells the optic 'nerve' in chronic ICH. This problem is difficult for me to manage and make decisions on. Particularly is there any reason papilloedema would vary markedly from month to month. This ICH is asymptomatic. I have read the recess is a cul de sac so CSF pressure and flow is different to the rest of the head. It would be very kind if you could point me in the right direction to find research? It would be good to even understand which recess to consider.

Thanks. I'm with you on steroid-induced rosacea. I think I'm looking at a problem caused by topical hydrocortisone although the MGD is multifactoral.

Very sorry to hear you have meibomian gland dysfunction and hope for very good improvement for you.

[NeedMyEyes]

Increased pressure in the cerebrospinal fluid (the fluid that circulates around the brain) causes an increased pressure on the intracranial veins which then causes papilledema ( area around the optic nerve pouches into the globe). Papilledema can be seen by an eye doctor on routine examinations. Also, if it is serioud enough, you can see it on CAT scans, etc.

As to the other questions, they are for a neurologist and not a radiologist. Sorry I couldn't be more help with those.

Keep looking for the answers to your all questions though... the answers are out there.

[Mawsky]

What?

Sorry guys, but to some of us who are newer to this, the abbreviations can be confusing. FML to me means family medical leave. Obviously this is not what it means here, I'm assuming that it may be a steroid, but don't know which?

[magoo]

I do a lot of googling of those initials. Usually, it comes up with the answer.

I add 'eye' to the initials and get pretty good results

[y-gwair]

Went to eye hospital walk-in. Waited 3.5 hours. Pressure was fine. Doctor didn't seem too bothered at all. He said 'your eyes are red because they are dry' and was about to prescribe celluvisc but I said no need, I have it on repeat. Told me to stay off FML.

How long did it take to go away?

I'm getting so frustrated! My eyes were pretty clear when the pain started - now everything I've been prescribed has made my eyes very red and veiny.

Sorry you had a bad experience at hospital, I think it's pretty par-for-the-course, but at least you know the pressure's ok, the general eye people don't necessarily have a good understanding of dry eye.

I'm not sure what to suggest. Can you ring your specialist to discuss (leave a message with his/her secretary, outline what happened and ask them to call back?)

[littlemermaid]

Anatomy - nerves and brain to eye

NeedMyEyes: http://path.medrounds.org/2005/10/an...guide-for.html Thanks NME, I stuck at it. This shows we can find what we need on the internet to help us prepare when we talk to the docs, find out what they do and don't understand about our conditions. LM has a neurosurgery consultation and I have to be ready - I am so grateful for your kind support.