Crappy Opthamologists & Making Up Diagnosis

[Jenn1]

BAK is Benzalkonium Chloride (aka: BAC), the preservative used in most prescription eye meds. It's also used in many OTC eye drops, nasal sprays & gels, household cleaners, etc. It's very bad stuff, in my opinion. My eyes hate it.

http://www.ncbi.nlm.nih.gov/pubmed/22093372

http://www.medscape.com/viewarticle/711467_4

Mary in VA

Can I ask what antibacterial drops you use instead as I find I need to use one or my eyes become red and inflamed? I know about chloramphenicol, fucithalmic has BAK in it as i have only just realised, so a few alternatives anyone can recommend would be great, especially if they are available in the UK and no carbomer.

[MaryVa61]

I'm not using antibacterial drops, so can't help you there. I'm just using OASIS Plus lubricating drops, Refresh PM at bedtime, Travatan-Z drops for Glaucoma and Similasin Allergy Eye Relief.

I was on Acular for many years until a corneal specialist figured out it was making matters worse. I was hard to convince, but he was right. If I had to go on anibacterial drops I would search for something with no BAK or get the drops compounded, unless only needed for a very short treatment cycle. I found since avoiding the fomaledhyde that I'm allergic to I can now tolerate BAK for a short spell, but not multiple times daily and/or ongoing.

Mary in VA

[littlemermaid]

Jenn1, Lloyds Pharmacy are ordering chloramphenicol 0.5% preservative-free Minims refrigerated for us.

Some pharmacists are fantastic at these enquiries, and are interested in helping us find out what is available. They enjoy a professional challenge if you ask, and they get on their computer and find out for us and order it in specially from various suppliers. Must be company policy.

(The rest can't be bothered and just look forward to their break/end of day. Considering the regular business we all bring in you'd think the big chain companies would be more keen than 'nah, we don't do that', their loss, esp as the NHS/private providers become more disparate.)

A pharmacy without internet access relying on catalogues is therefore a non-starter on this. Pharmaceutical Services Negotiating Committee explains it all http://www.psnc.org.uk/pages/allowed...wed_items.html

Useful reference website for UK optometrists from City University, London 'Medicines Support Unit for Optometrists' shows alternative anti-infective drops http://www.med-support.org.uk/integr...tives?OpenForm

So it depends what's on the current list of eye meds approved in the NHS. The hospital pharmacy orders in what the docs want subject to NHS restriction inc budget (but then through Moorfields Pharmaceuticals, more interesting options. For info, any prescriber can order from there if they want to). If a doc, esp private, is comfortable to go off-label, it's up to them.

[Jenn1]

Thanks LM, great advice as always! I will ask at my local Lloyds for the vials. Also how often do yo use the chloramphenicol in a day or week? I was using the fucithalmic twice daily for a few weeks, but then i realised the BAK and have some celluvisc, just not sure the celluvisc alone will help with the burning and stinging or infections etc.

Do others with just mgd (oil blocked) and a good aqueous layer benefit from only celluvisc for lubrication or do you find you need additional drops to help with the burning and stinging and infections like the chloramphenicol and fucithalmic drops? Hope I make sense.

Also, do you buy the minims or get them on prescription via the gp/nhs?

[littlemermaid]

Celluvisc thread inc NHS £ chat http://www.dryeyezone.com/talk/showt...ght=#post69187

We are different on anti-bacs because we are controlling reinfecting ocular rosacea, minimum 2/wk chloramphenicol PF, incr according to flareups. It's a skill thing to minimise surface damage with all these drops, as you say.

If nobody posts, maybe do PubMed search on current thinking on antibacs/antibiotics in mgd.

Are you getting reinfection, Jenn1? Fucithalmic 2/day is a lot if you're not infected or trying pulse therapy. Have the eye docs got a management plan here, or are you on your own with this?

Have you had any clear meibom on oral fish/flax oil + low sugar, low GI diet? Also any signs of obstructed seb bleph other than previous acne? Your derm history sounds a bit like ours, altho she is purely periorificial derm.

Are you noticing sinus issues still?

It's the mileage, ma'am. All I ever wanted was one doc to talk to and manage this together. Isn't that how we all feel?

[Jenn1]

Celluvisc thread inc NHS £ chat http://www.dryeyezone.com/talk/showt...ght=#post69187

We are different on anti-bacs because we are controlling reinfecting ocular rosacea, minimum 2/wk chloramphenicol PF, incr according to flareups. It's a skill thing to minimise surface damage with all these drops, as you say.

If nobody posts, maybe do PubMed search on current thinking on antibacs/antibiotics in mgd.

Are you getting reinfection, Jenn1? Fucithalmic 2/day is a lot if you're not infected or trying pulse therapy. Have the eye docs got a management plan here, or are you on your own with this?

Have you had any clear meibom on oral fish/flax oil + low sugar, low GI diet? Also any signs of obstructed seb bleph other than previous acne? Your derm history sounds a bit like ours, altho she is purely periorificial derm.

Are you noticing sinus issues still?

It's the mileage, ma'am. All I ever wanted was one doc to talk to and manage this together. Isn't that how we all feel?

My last opth only recommended warm compresses and thats useless when the eyes hurt and lids. Whats pulse therapy? I find the anti bacs help with the daily irritation, but have been using only celluvisc for two days to see if i can get away with only using lubricant drops. I cant see any blocked glands tbh, and the derm said things should improve, but my opth said i have mgd and it will be for life, but he only quickly pulled my lids down and looked quickly???

I have a rash on the face, but ive had that for years and never had eye problems? I do wonder if all these specialists are throwing diagnoses at me so they dont look daft. I guess it is mgd but caused by accutane and not by spots etc... and i doubt it will 'improve' like the derm says as i have been off the meds for 6 months. Like you, i am left to sort things out myself with chloramphenicol and fuci and tear drops.

[littlemermaid]

fgs, wot's your follow-up time these days?

Pulse therapy means short course of eg doxy or topical antibacs or steroid with a view to fixing mgd. Some ophth say they've been able to do this and this is pretty much where these regimes are coming from eg http://www.dryeyezone.com/talk/showt...-presentations

What's happening NHS is: people see ophth in overloaded clinics, GP provides meds indefinitely on the basis of one specialist letter while moaning about cost, no one adjusts treatment or monitors for side effects, we attempt to self-medicate without ophthalmoscope exam based on how we feel.

[Jenn1]

fgs, wot's your follow-up time these days?

Pulse therapy means short course of eg doxy or topical antibacs or steroid with a view to fixing mgd. Some ophth say they've been able to do this and this is pretty much where these regimes are coming from eg http://www.dryeyezone.com/talk/showt...-presentations

What's happening NHS is: people see ophth in overloaded clinics, GP provides meds indefinitely on the basis of one specialist letter while moaning about cost, no one adjusts treatment or monitors for side effects, we attempt to self-medicate without ophthalmoscope exam based on how we feel.

I have monthly check ups, taking doxy for 3 months and also using fuci and celluvisc. I will see the opth at the end of the month and get him to check my mei glands again and throughly and then ask for some drops that wont cause long term damage. I havent been given any regimen, i am making regular appointments myself to make sure they are doing the right checks and giving the right meds or alternatives.

[littlemermaid]

You are getting regular 4wk follow-up in the NHS, Jenn1?

What do you think about oral flaxseed oil on this skin type (hypersensitive, sebaceous imbalance)? I'm still not sure how it's changing the sebum. We've had sebaceous + eye flareup on flax and stopped, but not flared up on fish oil, although eg forehead skin is more bumpy. But I just read an ophth who says press on taking oils through the MG flareup because it's endotoxins pumping out, then it regularises, but I dare not.

[Jenn1]

You are getting regular 4wk follow-up in the NHS, Jenn1?

What do you think about oral flaxseed oil on this skin type (hypersensitive, sebaceous imbalance)? I'm still not sure how it's changing the sebum. We've had sebaceous + eye flareup on flax and stopped, but not flared up on fish oil, although eg forehead skin is more bumpy. But I just read an ophth who says press on taking oils through the MG flareup because it's endotoxins pumping out, then it regularises, but I dare not.

I have had two monthly opth visits on the nhs yes as i am a new case and had flare ups, but I dont think it will continue as its my gp who prescribes my drops and meds and the opth just sends me away with compresses.

Does lm have cystic acne or closed comedones type like milia? Cant the breakouts be controlled with doxy or washes and creams with benzoyl peroxide? I havent tried the flax yet so cant comment until then.

[littlemermaid]

Hi, yes, thanks for asking. It's paediatric ocular rosacea with perorificial pustules and papules and red nose. Sounds lovely... but she looks pretty good on: Dermol 500 (liquid paraffin, isopropyl myristate, benzalkonium chloride and chlorhexidine hydrochloride) + Zineryt (erythromycin) + moisturiser + sunblock. So not mili, not cystic acne, but hypersensitive skin with some inflammatory process. (Benzoyl peroxide was too harsh, and she reacted badly to oral tetracycline so we are off the oral meds.) If it gets worse, we'll use metronidazole or azelaic acid but she's still very young, very sensitive skin.

What happens is, when she starts flaxseed oil to clear the mgs she gets a golden-looking red eye, surface and inside eyelids, which looks as if the mgs are pumping out enzymes to which the eyes are reacting. This doesn't seem to happen with fish oils, altho the skin is more sebaceous. Just wondered if this happened to you.

We can adjust the meibom by omega 3 oils + healthy diet, esp reduce animal fats, sugar, poss gluten - ophth not mention this? (ours was shocked he'd forgotten to mention it for 8m, lucky we've got the internet to self-medicate)

[Jenn1]

Sounds like lm has a lot to deal with, but glad shes got a great mum who knows her stuff and helps keep her in top condition.

My opth didnt say anything about meds or diet and such, and I had to ask him to check my glands to which he said yes you have mgd by pulling down the lower lids quickly. I do wonder how they get their degrees when we do all the hard work ourselves! Maybe on my next visit I should give him and the others a lecture on how to check his clients thoroughly and what advice they should give them about self management.

COME ON NHS, YOU CAN DO BETTER THAN THIS!

[jenny2008]

littlemermaid--has she had any luck with the change in diet?? i am trying a super strict gluten free..low sugar-just from fruits diet and its been about 6 weeks. havent noticed any change yet.. just curious. good luck to her

[littlemermaid]

Diet

Jenny2008 - We had periods of clear meibom when skin inflammation and its products were controlled on topical antibacs + washing hair with mild sensitive antidandruff shampoo (NB she is sebaceous + dermatophytes eg Malassezia furfur, so not for everyone) rather than improved diet, but this was y2 of unidentified systemic hypersensitive inflammation (we are now y3.5 and much worse).

She is now getting worsening flare-ups according to diet and skin hypersensitivity, and we're trying to establish acne rosacea + eye inflammation triggers. As well as diet, these also seem to inc components of bathroom and washing products: detergents, antibacterials, perfumes, common itchy-eye allergens like dust, poss mould, feathers (eg she has anti-allergen bedding).

Diet: Sebacous skin inflammation worsens with sugar + red meat + processed fats, poss fruit juice. (Spectacular rosacea-type sensitive flare-up + red eye on sneeking one sip of red wine punch this xmas.) I can pretty much tell what she's eaten from the type of inflammation on her face... Some say acne is like 'diabetes of the skin'.

Top opth and derm and neuro have been surprisingly supportive on diet approach in theory - xpt for prof of derm at Imperial who won't work with me on anything - but I'm trying to find my own way forward.

It doesn't help when she goes on a cinema + sleepover 'yes, I will not eat junk and I will do my treatments and get plenty sleep', but consumes sweet popcorn + Sprite + junk meat lasagne + brownie, icecream, fake cream + sweets, gets 2h sleep 'mum, I had a lovely time'. Today she is off school in bed 'sobbing' in agony, unable to sustain tear film at all on lubricant every 5mins, incr steroid onto the eye surface trying to control inflammation (hoping to contain it on 3/day), drops straight from the fridge, cold compress. The result will be further signs of chronic inflammation damage on cornea when we see the ophth shortly.

Just to give people an idea of how diet affects inflammation + mg function in an obvious case, if it's useful. And show how lots of factors spiral us back to manageable health.

I've been experimenting on myself ('normal', 50) and can pretty much tell what I've eaten from state of meibom and the worst cloggers are animal and emulsified fake fats - pork products are the worst and as a family we are totally off the stuff, red meat is poor, esp as above. With fake cheese as well, disaster. Oily fish risotto cooked in eg light olive oil with turmeric is the best. But I'm not good with sugars and gluten either, inc tinned tomatoes, citrus, fruit juice, prob border-line diabetes II. Assuming everyone's a bit different depending on their dietary history. Drink lots of water, seriously, lots.

[christinea]

Dear All,

Three different ophthalmologists diagnosed me with Blepharitis and prescribed the usual treatment regimen including eyelid scrubs, steroid drops, etc.

Unfortunately, it only got worse over the years. My eyes were always red - my co-workers probably thought I was drinking or smoking (I wasn’t). Dark bags under my eyes made me look 20 years older than I was, it was terrible.

After suffering for five years I decided to read everything that I could find on Blepharitis and found two guides that changed my life! The first was an ebook written by Dr. Banerji called “How to treat Blepharitis & Eye Allergies and live symptom free”. I found it at blephguide.org. The second was written by Dr. Latkany on dry eyes.

After reading these two books, I actually made an appointment in NYC to see Dr. Latkany. It turns out that while my symptoms were that of Blepharitis, eye allergies was the primary cause and was contributing to my problem. I then tackled my eye allergies with the help of an allergist and an allergy shot regimen, and after six months am finally living symptom free!

I truly wish the same relief for everyone that reads this posting.
Blessings to all,
Christine A, Florida.