dry eye and accutane

[Angela]

I suffered with infections for years afterwards. Mostly colds and throat infections etc. Also developed food intolerances and suffer with very bad back and joint pain. Nightmare drug wish I had never ever taken it

I have multiple problems like that too, including the joint pain and I'm 26 yrs old. The worst for me is the nasal problems, eye problems, & fatigue.

[Angela]

Just wanted to say that I had 2 lower plugs inserted (one in each eye) and I had epiphora (tears running down my cheeks) at first. Then after a few weeks, they stopped.

Now, my eyes are as dry as they were before (drier, maybe?). And I think if I get the uppers plugged, then the same thing will happen.

Hi NME, hope you are doing okay.

[macio1981]

I do feel for you. It wasnt that bad! I guess I just didnt like having spots and wasn't getting as much attention from girls etc because of it and it seemed like a miracle cure. Its incredibly destructive and affects people in different ways. I should never have taken it but I was 18 and lacked life experience. Have you had blood tests etc?

[macio1981]

I am having sinus surgery in a couple of weeks.....I think my nasal passages etc are very dry and inflammed.....very interesting to hear that. I had dreadful fatigue for about 1 year afterwards.

[macio1981]

No worries, glad to share it. Have you seen Mr O'Brart? Yes Andrew Matheson.

[littlemermaid]

Hi Angela - So good to hear you are OK. Very good news that you can get health insurance and care where you are. Very much hope you can find healthy in your new life. Are you cycling everywhere and eating well now?

We are happy and managing things well now she is older - she is going on music tour in Europe so life with dry eyes and rosacea can be very fun and manageable - and we owe it all to hardworking fabulous NHS paediatric ophth. If things go wrong, I'll just fly out there. I type faster than I think so I wouldn't read my posts...

Hi Macio - Liking the sound of Mr O'B, haven't seen him, seen Mr M and got the photos (beautiful retinal images), so happy these conditions are better recognised and treated these days.

[macio1981]

Hi,

He is good. although he hadn't heard of flow controller plugs which I found very surprising given his experience. It just shows that we have to do our own research and be our own doctors sometimes! Matheson is also good but he is not an ophthalmologist ultimately. I had a little bit of rosacea treated with IPL laser and the results are very good indeed. Its not that expensive either. How old is your daughter? Theretears nutrition is very very effective for me, not sure if you have tried this but I could not live without it. They are also doing research on IPL laser for MGD as this has been effective in some cases. Mr O'Brart often prescribes tea tree oil face wash as it fights the Demodex mite which can thrive in MGD environments...not sure if it makes a real difference however (I have tried it). I have also read about testosterone creams (again not sure how appropriate!) and I have personally tried Azithromycin orally. There is a drop called Azasite which is available in the USA which has the same ingredient. Are her symptoms very severe? One Ophth. gave me bandage lenses but my eyes were too dry. Hopefully in time there will be better treatments but things do happen slowly..... I finally had the flow controllers fitted....the jury is still out though....I am using more drops that's for sure. Kind regards, Richard

[littlemermaid]

Hi Richard, Thanks for the info & kind thoughts. She is 15yo, started ocular rosacea age 11 with puberty: periorificial p&p, flush, red nose, various topical and systemic hypersensitivities. MGD started 1y before rosacea skin symptoms, refused Accutane and topical isotretinoin.

He's a nice guy, AM, isn't he? We're doing well with monitoring from optometrists working flexibly in hospital service anterior segment + high street (if anyone wants one, try asking the hospital optometry service who they've got). I understand we can also use hospital optometrist service for ongoing monitoring of chronic eye inflammation without consultant clinic appointment, then get referral from them if needed (like glaucoma patients can).

Theratears nutrition is great isn't it, we started on that, but we're suspecting a problem dealing with flaxseed oil so we've gone Ascenta NutraSea fishoil with vit D3.

Good plan about tea tree face wash to combat demodex overgrowth just in case. She is sensitive to facewash (we've considered tea tree steam but she doesn't want to try it yet), but Avalon tea tree shampoo + conditioner has been gentle and good, less preservatives etc.

I was just reading this about androgens which you might like Androgen regulation of gene expression in human meibomian gland and conjunctival epithelial cells, Payal Khandelwal, Shaohui Liu, David A. Sullivan Schepens and Harvard, Molecular Vision 2012, 18

We did Azithromycin 6 days (Azyter, available NHS now). The MGs did clear beautifully although there was soreness on the inside lower eyelids + we were also using steroid at the time.

Thanks for info about bandage lenses. I've always wondered what would happen. And IPL - I've always thought IPL would be great eventually for the nose, but def not near eyes - what do you think?

Good luck with the flow controllers, we've got lower plugs which help dryness but I think there's plenty going down the uppers, probably more than usual (blow nose after fluorescein drops!). Have you found any rosacea triggers?

[macio1981]

Hi,

I gather IPL is been used on the eyelids with protective shields being used to cover the eyes. But it will obviously depend on symptoms etc. David Crystal (Edinburgh) advised me that once lower plugs are inserted, upper puncta begin to drain a lot more. So it may be worth looking into that, or flow controllers if eyes are too watery. I personally think that punctal occlusion should be done as a matter of course, upper and lower if necessary because the results are immediate and are often enough to make symptoms subside quite dramatically. I would definitely go and see Mr O'Brart, he is excellent and he is the most visionary / forward thinking Ophth. I have seen. I know he travels to the USA a lot which is always promising...they are more advanced than we are in this field. I did like A. M. but I found eventually that he was limited in his capacity but he never suggested seeing an ophth. I saw him for 7-8 years and he never suggested anything other than warm compresses / lid care and Theratears drops (which are good) but I got the feeling he only recommended his own products. He even refused to put upper plugs in and if he had, my symptoms would have improved a very long time ago. I have had a lot more success since seeing proper private ophths. Anyway, I hope you find some relief for your daughter, it's a very difficult "disease" and I hope as time goes by more can be done about it. Kind regards, Richard

[macio1981]

Very interesting article by the way, thanks. There is hope!

Richard

[spmcc]

I was just reading this about androgens which you might like Androgen regulation of gene expression in human meibomian gland and conjunctival epithelial cells, Payal Khandelwal, Shaohui Liu, David A. Sullivan Schepens and Harvard, Molecular Vision 2012, 18

Quite a few years ago now, David Sullivan developed an androgen treatment for dry eyes. It was licenced to Allergan. Allergan, however, was not interested in developing the therapy because it already had Restasis (why dilute their market?). Anyway, I think this happens quite often - the "buy it and bury it" scheme.

At that time, there was another company producing a topical testosterone product, but they did not market it. The reason is that they would be infringing upon the patent rights licensed to Allergan.

Right now, Leiter's Pharmacy in Southern California is selling a topical DHEA, that has androgen action, for the treatment of dry eye.

[macio1981]

Interesting. Has there been much reported success with androgen products? Or specifically this topical product?