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Hi everyone. I’m really struggling and honestly feel like I’m at the end of my tether with this disease, so I’m hoping someone here might have some advice or similar experience.
I’m 27 and have been dealing with severe dry eye, MGD and filamentary keratitis. My eyes are constantly red, burning, gritty, dry and painful. If I don’t use drops very frequently, I develop filaments. I’m currently using Thealoz Duo around 20 times a day because otherwise the filaments become a major problem.
My NHS consultant believes I have Accutane/isotretinoin-induced MGD and evaporative dry eye. I took Accutane around 10 years ago when I was 17/18, so I’m struggling to understand how something I took that long ago could still be affecting me so severely now.
So far I’ve tried:
- Steroid eye drops
- Doxycycline, but I have significant gut problems and couldn’t tolerate it
- Cyclosporine – I’ve only tried it for 2 days so far because the burning was absolutely insane. Should I persevere with it or is that level of burning a sign that I shouldn’t continue?
- Warm compresses
- Thealoz Duo very frequently
I’m struggling enormously with working. I’m on screens all day and my eyes become unbearable. I’m genuinely considering quitting my job because I don’t know how much longer I can cope, but financially I don’t have that option. I’m in the UK and I don’t really know what support is available for someone who is struggling to work because of severe dry eye.
The NHS hasn’t been able to offer me much in terms of treatment, and private care seems to be the only realistic route to getting more specialist help, but I simply cannot afford it.
I have managed to get an appointment at the Aston University Dry Eye Clinic on 3rd September, which I’m really hoping might finally give me some direction. If anyone has been there, what should I specifically ask them to investigate?
Things I’m wondering about:
- Meibomian gland imaging / degree of gland loss
- Tear production and tear-film quality
- Tear evaporation
- Ocular surface/corneal damage
- Filamentary keratitis and why I’m forming so many filaments
- Whether there could be corneal nerve involvement/neuropathic pain
- Whether there are treatments I haven’t considered yet
- Whether serum tears/autologous serum, scleral lenses, moisture chambers, IPL, amniotic membrane treatment or other options could be appropriate
- Whether they can give me a proper long-term management plan rather than just continually trying different drops
I’m also really worried about the psychological impact of this. I have had suicidal thoughts because of how relentless this condition is. I’m not saying that for attention — I’m saying it because I genuinely need help and I’m finding the constant pain and uncertainty incredibly difficult to cope with. It has caused me massive anxiety and has completely changed my quality of life.
If anyone has been in a similar position, particularly in the UK, I would be incredibly grateful to hear what actually helped you — NHS options, financial support, workplace adjustments, private clinics that are affordable, treatments, specialists, anything.
I feel completely hopeless at the moment and I’m desperate for some direction. I just want to be able to function normally again.
Thank you to anyone who takes the time to read this.