UK Keratoconus Self-Help and Support Association

Hi all

Since my graft in May they have been struggling to keep the pressure down. Tried a different steroid Vexol but that just made my eye sore and red (although the pressure did come down). Despite taking three different lots of pressure reducing drops nothing is working. They are now thinking of putting me on tablets !. Anyone else here had a similar experience ?

Ian

Ian

I managed okay with drops, but if topic steroids are diverging raised IOP then it makes sense for them to try systemic steroids instead.

All the best.

Andrew

Hi Grandpa

Sorry that you've got the dreaded high IOP. I'm starting to think that it's almost inevitable with a graft because a) you have to take the immunosuppressant medication because, well, you have to suppress the immune system and b) the medication has a side effect of raising the eye's pressure so unless you get taken off the stuff quickly (or are one of the lucky people who doesn't get the side effect -- but it is listed as the most common for this type of drug) it seems to have high odds of happening.

If it's the steroids we're talking about here do you know why you're still on a high-ish dose ? I know the professionals simply hate the patient looking things up on the internet and coming in saying "hey, I read in the whizzy journal of bleeding edge ophthalmology that you can do X, Y and Z so why can't you..." (I get this in my job, drives me absolutely nuts) but ( ) it may be worth asking if they can reduce your dose. I came down from 4 to 3 drops a day after about 4 months then we tried going down to one drop because my IOP was still high. It is a little bit of a gamble because you I guess have to have the graft and the pressure checked within a couple of weeks that you're not doing more harm than good, but if you can show that you're okay on a reduced dosage this should help with the IOP problem.

Second, you might have tried everything, but have you been prescribed Fluorometholone (FML) ? This, the manufacturers claim, has a lower incidence of high IOP. I'm not massively convinced, but it might be worth a try if you've not already done so.

If you're off the steroids already so they're nothing to do with the high IOP, sorry, I've no information that could help.

Hope things get sorted for you soon. Keeping everything crossed.

Best wishes

Chris

Hi Ian,
Yes, raised pressure post-graft seems to be very common. I also had it, though I was lucky and a combination of changing to a different steroid drop and drops to reduce the pressure worked in my case.
All the best with getting this sorted.
Anne

Thanks all. They have reduced the dex down to twice a day and the pressure yesterday was 40. When they put me on the Vexol it was 13 whilst taking all the pressure reducing drops. Problem was my eye was so red a sore. Might suggest we have another go I really don't want to go on tablets. The Vexol is in a bottle and I have had issues in the past because of the preservatives. Seems there is not a single dose preservative free option available.

Ian