Announcement

**littlemermaid** · 03-Dec-2014, 16:36

Hi Finbar, Hope you get some feedback soon from Accutane users.

Just in case it helps, my daughter has rosacea from prescribed steroid on the face and MGD - do you still have skin issues which may be contributing to MGD? After a few years of nasty keratitis flareups treated by ophthalmologists, and using good tips from here - warm compress, eyelid wipes, keeping the eye surface moist as possible - she is thankfully down to 4m/6m checks and doing great. We treat the eyes as super-sensitive so careful with chemicals.

I did ask our ophthalmologists about their experience with Accutane (in teenagers) because the derms prescribed topical retinoids. They said 'aqueous deficiency wears off with our patients'. We tried topical retinoid but the MGs started oozing weirdly on day 1 so stopped, without further advice (wasn't possible to get any of these people interested, let alone talking to each other about side effects and risk!).

It's been a question of Googling 'ocular surface disease' or 'dry eye' or 'keratitis' and 'UK' or your NHS health trusts or 'private ophthalmology', looking for good support. What's been your experience so far? Is there anyone local you can continue to work with while you shop around? Maybe you are 'refractory to first line management', if anyone asks www.rcophth.ac.uk - corneal and external eye disease

We've always done much better in big regional teaching hospitals where eye surface management specialists are, and got used to travel. Google 'ocular surface Leeds' and 'Manchester' are showing possibles. Some members have done OK at Yorkshire Eye Hospital, especially when LGI has been busy, and there's Moorfields.

It has been useful for us to pay for one-off private consultations with the specialists for advice, then go back into NHS teaching hospital clinics for regular follow-up and safety. Our GP also says they can make a case to NHS CCG Referral Committee if we have a Consultant letter. We got best advice asking other ophthalmology consultants who has clinical interest in the condition.

It's been helpful to get the support of a high street optometrist who works/has worked with hospital eye clinics, if you can find that, plus they can refer wherever we need to go. I did ask an Optometrist where they send their post-lasik dry eye patients, which threw up some private eye clinic options. I think some of these private clinics may not acknowledge the risks of overusing steroids to get 'results' though, and don't envisage dealing with the consequences.

In the NHS, they have taken a more long-term view and suggested eg cyclosporine as a 'steroid-sparing agent'. I used the private service of an NHS Trust for one-off advice, which was good, because we could specify Consultant and they accessed the NHS notes. Also they can suggest non-standard treatments and meds, but then we have to pay a lot for them.

Any idea what the state of your meibomian glands is? Have you ever had clear oil? We've done OK on short courses of Azyter, for example, but you really need a good assessment. Some doctors are offering meibography now, if you think it's worth it, but really experience would be most important as to what's happening.

Have you got an eyedrop you like to use through the day? We've used Celluvisc but doing well on Hyloforte, as needed - hyaluronic acid is supposed to be more healing. Are you using eye protection? Has anyone offered to try punctal plugs?

You may need a Consultant letter to demonstrate these are Accutane side effects to help access Ophthalmology specialists. It's been useful to keep a file of Consultant letters and prescriptions, with summary sheet. Saves time when we see new doctors and also helpfully records exact history of side effects and treatment. We can request copies of all Consultant letters, test results and prescription records either from hospital Departments or GP. Keep the packaging for the Accutane with the prescription label, if you still have it. Next year April 2015 all your Medical Records should be accessible to you online for checking, including meds reactions.

NHS Yellow Card Scheme is how patients feed back to NHS on side effects to benefit and protect others on risk. It's unlikely your Dermatologist or GP has taken the trouble to do this.

3m is not long for healing so all hopeful once you get your improving regime in place. What do you think?

**mdryeye** · 08-Dec-2014, 09:21

I would suggest you stop accutane immediately. It has been 2.5 years for me since I stopped it (used it for 3 months too), but I still have pretty bad eye situation, with almost zero improvement, even after trying all available treatments. I wish it will not be the case for you.

**alex123711** · 11-Apr-2015, 19:04

There was a video on youtube I can find at the moment but basically a guy that had dry eyes from accutane went on a detox/ diet and says he's 90% better and still improving. I sent him a few emails;

"i ate, four "meals". the following possibly:

1 - lettuce (5 grams of carbs worth), scooping up vinaigrette, and ham
2 - same again
3 - chicken kebab, marinaded in lemon, oil, garlic, + courgette (zucchini) (5 grams of carbs worth)
4 - same again maybe

i also sometime added raw beetroot to the mix. and i had a cup of dandelion coffee (1 gram of carbs). it was utterly miserable, but the result was fantastic."

Anyway I'm just starting to try the detox myself, I'm not sure if it will work but I believe the base materials from accutane are still in our bodies, I notice I get the 'accutane' side effects worse when I eat certain things eg. fish oil, its like it reactivates. I think getting it out of the body will help, just need to find the best way to do this.

I will try and find his video

**alex123711** · 09-May-2015, 18:13

Found the link I was referring to:

https://www.youtube.com/watch?v=o3bgYlCG4js

Announcement

Dry eyes caused by Accutane, help me please !

Dry eyes caused by Accutane, help me please !

Comment

Comment

Comment

Comment