Dexamethasone Drops

[Lfarls]

I just got the preservative free dexamethasone drops from leiters in cali. I started using them yesterday, brought down the inflammation and I'm not as dry as I usually would be this morning. However being that it is a steroid my doc only wants me on it for a month. I figure that if i continue to use it everyday for a month I'll build a tolerance. This happened with every other steriod I've used, lotemax, alrex, zylet, fml..they work at first then its like I build a tolerance and it stops working. My question is has anyone gotten long term relief with using a steroid for a short period like dexamethasone? My doc says dexamethasone is better than lotemax and all the other stuff just wondering if anyone else has tried it and got some relief.

[SAAG]

For me, steroid drops provide relief while I'm using them, but after I stop, I got back to "normal".

However, years before LASIK, I had a bad case of allergic conjunctivitis that itched and burned like crazy - my doc at the time prescribed a steroid drop for a week, and it fixed me - totally cured that awful flare up and made me good as new....

I would think it just depends on the situation and the person... ie. for some situations/people it will bring them long term relief, for others, not so much.

Just curious, but did your doc say why he prefers dexamethasone over lotemax and the others?

[neve]

What helped me was Alrex and it was used VERY sparingly, once or sometimes twice a day for about a little over two weeks. Steroids can have some devestating side effects, tho I AM AWARE THAT SOMETIS NOTHING else feels as it will do. OFTEN, i used a cool clotH on my eyes and honestly, it worked better than the steroids, THO the effectS were not hours long. I was told by my oiptom. (that is now my ex- optometrist as I am goING to a corneal specialist) thaT aLREX WAS THE SAFEST STEROIDal DROP BUT STILL YOU NEEDED TO EXERCISE CAUTION. i AM COMPLETELY OFF OF IT, THO stILL have pain on a daily basuis. Do not want cataracts etc as side effect.

wishing you the best and just as an aside, did not ever feel negative side effects due to ALREX BUT THAT'S ME.

[y-gwair]

Be very careful using steroids, I'm fairly certain that using dexamethasone drops triggered my severe, painful facial rosacea, and possibly worsened my ocular rosacea.

[Lfarls]

SAAG- My doc says he prefers the dexamethasone because it is preservative free. I also tried lotemax before with no help so he thought it might be beneficial to try it.
NEVE- I tried the alrex and it did help for a while, I guess I feel I have to use it more because my lids are chronically inflamed 24-7, they getter better at times but it never completly goes back to normal.
Y-GWAIR- Yeah my doc says I can only be on them for a month and then no more steroids, I'm not sure if it makes my rosacea worse because my eyelids are always red so I can't really tell.

[y-gwair]

Y-GWAIR- Yeah my doc says I can only be on them for a month and then no more steroids, I'm not sure if it makes my rosacea worse because my eyelids are always red so I can't really tell.

The red patches of veins are noticeably less red and glands producing more oil since starting ciclosporin 0.2% ointment/clonidine tablets for flushing, far more obvious improvment than I had using steroid drops.

[sazy123]

I just got dexamethasone drops from leiters. I have the research study, i found online. It says the low dose may be able to be used 'longer term', but im going back to my doc to ask. Today my eyes feel noticeably better (only first day of using them)- so im not sure i can attribute it to these drops yet. the study says, 65% got moderate to complete resolution of dry eye symptoms, and 22% got mild to moderate improvement, and 13% got no improvement.

No other steroid that i tried has helped so far. I have very inflamed inner eyelids. I will post the study, my doc gave it to me because he said im very informed on dry eye!

[littlemermaid]

Sazy, Yes, please post the study. We're using it very low dose now with good results only 2 drops per week. Obviously I'm not thrilled about using steroid for years. Can't manage without it though, even to 1 drop per week. It's fascinating this very low dose works for rosacea though, really interesting. We've had meibom pretty much since we started after a very short blast of topical azithromycin (Azyter).

Have you tried low dose cyclosporine with an aqueous base instead of oils?

Moorfields talk about hypersensitivity - is this you, do you think? Certainly LM is better just on frequent normal saline without tear substitute eyedrops. This isn't for everyone but seems good if it's an immunology and sensitivity problem.

If we stop the rosacea skin from flaring, she's good on this minimum regime, using normal saline 6/day, and the tearing starts to improve well. Then it's about healing the eye surface, I guess. If the skin flares, we need a more viscous eyedrop to see us through and increase steroid.

The principle is, I think, to taper off to minimum intervention and chemicals to attempt to normalise things and allow recovery, once there's a spiral of improvement. Then it's maintenance.

Like the sound of your new doc - still in Pennsylvania?

[sazy123]

I like how you think, you sound like a doc lol.

My eyes dont feel any worse if my skin looks worse. My eyes are bad no matter what- unless im sick or have a other symptoms like a congested throat. Im exploring perfume allergy/senstivity right now--- but it seems impossible to avoid, when everyone around you wears it and sprays stuff at work or leaves it lingering in the bathroom. So I do my best to avoid- but it seems impossible!! how do you deal with this with your daughter? i read that you were avoiding perfumes. With type 5 allergans- you can have an exposure and a reaction can last 3 weeks!!!

I still think i have ocular rosacea, due to inflammed inner eyelids but havent found that anything so far helps this inflammation. Cant tell yet if these drops will.

My doc here is decent, better than most, but he said ive really tried mostly everything. Sigh.

[littlemermaid]

Hi Sazy, I've been following your treatment posts since 2009 so thanks so much for that, you're an inspiration Happy you're seeing docs in the US but very sorry about the husband thing. Swings and roundabouts, eh.

We sound very similar. This hypersensitivity/allergy type IV, or whatever rosacea is, problems show as acne rosacea, so some reactions show as flareups like a barometer on the face, poor kid - chemicals, foods, hormonal, viruses, bacteria. MaryVA61 and SAAG and Spmcc and Rebecca's and others' experiences are so useful on finding triggers (I hadn't realised eg formaldehyde or nickel or gluten could be causing this skin/eye inflammation). For our mgd, eliminating triggers is the best help on keeping the glands clear now she's pretty well controlled as above with occasional unidentified flareups. Seems pretty obvious the extremely low-dose steroid in chronic use keeps the immune reaction stable, but, of course, could be turn out to be a long-term disaster, cataracts etc.

In terms of a cure, this is where we're at - we're just not quite there yet with the inflammation pathways and the immunology, are we - I'm following derms eg Richard Gallo, Frank Powell and eyes Christophe Baudouin on Google Scholar Alert to see how they're getting on with that. LOL, seeing too many docs. Take it slow and look after yourself carefully.

[blessings]

Noticed you used dexamthasone drops from Leiters. I am currrently using them. Did you get improvement from using steroid drops. How long did you use them, and did they help with MGD?

I just got the preservative free dexamethasone drops from leiters in cali. I started using them yesterday, brought down the inflammation and I'm not as dry as I usually would be this morning. However being that it is a steroid my doc only wants me on it for a month. I figure that if i continue to use it everyday for a month I'll build a tolerance. This happened with every other steriod I've used, lotemax, alrex, zylet, fml..they work at first then its like I build a tolerance and it stops working. My question is has anyone gotten long term relief with using a steroid for a short period like dexamethasone? My doc says dexamethasone is better than lotemax and all the other stuff just wondering if anyone else has tried it and got some relief.

[Nikki]

Not sure how low the dose of dexamethasone you're using... but, I'd be VERY cautious when using it. It has one of the worst profiles in terms of incidence of glaucoma, cataract.

[littlemermaid]

Nikki, This is a worry. Would you post up some refs for us so we can think about steroid side effects? I've always felt happier on FML in terms of unnecessary absorption and retention when the inflammation is just basically around the conjunctiva but we can't get it preservative-free in UK as far as I know.

[SAAG]

Nikki, This is a worry. Would you post up some refs for us so we can think about steroid side effects?

I second this - would love to get my hands on something like that!

[blessings]

The dose is 0.01% I started Dec. 8th with 3 drops per day. After 7 days I reduced to 2 drops per day. Inflammation is gone and eyes feel better, but concerned about staying on the drop long term. I do not have rosaccea or any obvious lid irritation. I do have MGD. The steroids, preservative-free, are suppose to reduce inflammation and help the meibum to secrete. My glands have keratin debree and block. Have not tried azacite or doxy. Trying to prevent atrophy of the glands. Any suggestions would be helpful. I have a pre-existing cataract and do not want any worsening of the cataract or glaucoma.

Not sure how low the dose of dexamethasone you're using... but, I'd be VERY cautious when using it. It has one of the worst profiles in terms of incidence of glaucoma, cataract.

[Dog2012]

Does some one periodically checking intraocular eye pressure??

The dose is 0.01% I started Dec. 8th with 3 drops per day. After 7 days I reduced to 2 drops per day. Inflammation is gone and eyes feel better, but concerned about staying on the drop long term. I do not have rosaccea or any obvious lid irritation. I do have MGD. The steroids, preservative-free, are suppose to reduce inflammation and help the meibum to secrete. My glands have keratin debree and block. Have not tried azacite or doxy. Trying to prevent atrophy of the glands. Any suggestions would be helpful. I have a pre-existing cataract and do not want any worsening of the cataract or glaucoma.

[blessings]

I am using 0.01% This is compounded through Leiter's Pharmacy. Started on Dec. 8th and used 3 drops for 7 days, then cut back to 2 drops for 7 days, now on 1 drop for 7 days. I do not know the usual way to reduce the drops. Are you aware of how they are normally prescribed?

Not sure how low the dose of dexamethasone you're using... but, I'd be VERY cautious when using it. It has one of the worst profiles in terms of incidence of glaucoma, cataract.

[blessings]

Do you know of situations of cataracts and glaucoma, and how long can you use and still be safe?

Does some one periodically checking intraocular eye pressure??

[sazy123]

The dose is 0.01% I started Dec. 8th with 3 drops per day. After 7 days I reduced to 2 drops per day. Inflammation is gone and eyes feel better, but concerned about staying on the drop long term. I do not have rosaccea or any obvious lid irritation. I do have MGD. The steroids, preservative-free, are suppose to reduce inflammation and help the meibum to secrete. My glands have keratin debree and block. Have not tried azacite or doxy. Trying to prevent atrophy of the glands. Any suggestions would be helpful. I have a pre-existing cataract and do not want any worsening of the cataract or glaucoma.

Glad it worked on your inflammation. I tired it for 1 month 2 x a day and it made no difference to my inner eyelid inflammation. I think this goes to show that my eyelid inflammation is beyond help. Nothing has brought it down- nothing has made a dent in it. No steoid. Azasite. Restasis. Which makes me think it is being caused by auto immue disease or a strong ocular rosacea inflammation vicous circle. I dont know. Most people with ocular rosacea can bring the inflammation down with SOMETHING.

Being sick makes it better, thats it.
Im back on restasis 8x a day.

Littlemermaid, thanks for all your info. Where is your daughters inflammation- eyelids, eye surface?

[blessings]

Does Restasis seem to help you. Did you use dexamethazone 2 x a day? Did that dose for 1 month affect your eye pressure or formation of cataracts? How often did you check your pressure while on the drops? I have MGD. Sorry you have had no success with steroids, azasite or restasis. Do you also have MGD?

Glad it worked on your inflammation. I tired it for 1 month 2 x a day and it made no difference to my inner eyelid inflammation. I think this goes to show that my eyelid inflammation is beyond help. Nothing has brought it down- nothing has made a dent in it. No steoid. Azasite. Restasis. Which makes me think it is being caused by auto immue disease or a strong ocular rosacea inflammation vicous circle. I dont know. Most people with ocular rosacea can bring the inflammation down with SOMETHING.

Being sick makes it better, thats it.
Im back on restasis 8x a day.

Littlemermaid, thanks for all your info. Where is your daughters inflammation- eyelids, eye surface?

[sazy123]

I had it checked after one month, and pressure was fine. Ihave never had an issue with pressure on steroids. I think some people respond worse than others to steroids so just get it checked monthly.

I was on it one + months and did not notice much of a difference, maybe i needed longer. But my understanding of steroids is they work quickly. My doc said i should see improvment in that time.

Restasis didnt help me either times i tried it. But Im back on it at 8 times a day now,, to see if that helps. I have no more options of things to try so...

Yes i have MGD. Glands arent blocked- just dont produce oil due to inflammed inner eyelids caused by ocular rosacea or an unknown auoto immue disease.

Is your inflammation on your eye surface?

[blessings]

I do not have eyelid inflammation, just eye inflammation due to dry eye. Concerned about glaucoma or cataracts or becoming dependent on steroids. Trying to find a doctor to express glands to prevent atrophy. I am on Restasis 2 x a day. I have heard it can take up to a year to benefit from Restasis. I have been to Duke University to have lipiflow, but glands blocked again after a short time, maybe 1 month. Hope you can find some answers.

I had it checked after one month, and pressure was fine. Ihave never had an issue with pressure on steroids. I think some people respond worse than others to steroids so just get it checked monthly.

I was on it one + months and did not notice much of a difference, maybe i needed longer. But my understanding of steroids is they work quickly. My doc said i should see improvment in that time.

Restasis didnt help me either times i tried it. But Im back on it at 8 times a day now,, to see if that helps. I have no more options of things to try so...

Yes i have MGD. Glands arent blocked- just dont produce oil due to inflammed inner eyelids caused by ocular rosacea or an unknown auoto immue disease.

Is your inflammation on your eye surface?

[littlemermaid]

Littlemermaid, thanks for all your info. Where is your daughters inflammation- eyelids, eye surface?

Sazy, Both really, in that she gets eye surface flareups when the MGs are suffering. We're not sure whether she would have eye inflammation without the on/off MGD, like you, but it looks like she would. However, people who manage their rosacea well seem to fix their eyes.

The cause is obviously skin that looks like mostly p&p rosacea but some docs think looks more like periorificial dermatitis, which flares up. So that's probably something overactive to various invaders concentrated around the places of greatest immune response, isn't it, whether flora, fauna, chemical. I was interested to read that more men are triggering perioral dermatitis now more of them use 'skin products', so that needs careful thinking about. Acne antibacs, steroid creams and suncreams have been the worst offenders [ref Medscape News]. Periorificial dermatitis is more recognised in children than rosacea, but a difference in pathogenesis between the two has not been identified so they might be same or similar.

So we treat this as hypersensitive eyes. After intervening on flareups, we reduce to minimum and things look pretty good and we're on a maintenance regime for the eye surface and MGs, always vigilant and thinking about possible triggers.

It's like skin sensitivity behaves and this is why the derms are saying to us 'use anything that works'. Although they avoid thinking about the eyes and focus on getting her looking OK and the Ophth find that absolutely infuriating, as I do. Things work well on skin, then you react to them because there's been too much. Or we can slowly build a tolerance, eg use a skin antibac 2/wk and increase. It's tricky to do this for someone else. This is why I've found it helped so much to get educated like people do here and from Dr Google, and think about this ourselves, then find receptive docs to talk with, like you do.

We saw a kind Paed Rheumatologist for thoughts about autoimmunity and to see if he recognised anything in early stage, but he couldn't find anything obvious although he even tried some genetic testing. Sometimes rosacea types show up on HLA B27 but that's not uncommon. And this is the problem with less known autoimmune pathways. As he said, we don't know much about systemic inflammation responses yet. (He is a saint to support children in rheumatology; we saw bad adolescent juvenile arthritis in his clinic, and there will be uveitis, so we are counting our blessings and thanking him very much for having a look at LM.)

Also there's a judgement call on what a positive or out of range actually means since we've all got kinky DNA and immune responses one way or another. But you had some anti-nuclear antibodies (ANA) to something? What was that?

Blessings, Can you talk to your eye doc about cataract risk? It's an important conversation. It's a difficult conversation but it feels better when it's out there. Your tapering regime sounds familiar and very good to me. Are you still taking fish/flaxseed oils and comfortable with your tear substitute eyedrops? And using wraparounds to maintain moisture? Something else they try to get the MGs going is a sub-antimicrobial dose of oral antibiotic although no one knows why this works sometimes. So it's a question of gently keeping the MGs and eye surface good now the inflammation's under control to bring about the spiral of comfort and healing.

[blessings]

I had my ANA checked through blood work and the result was less tan 1%. That is negative for any connection to Sjogrein's. I am going back to Duke the in January, and will continue with 1 drop maintenance dose of Dex daily until then. It is winter here and the air is dry. I will need monthly expression of meibomian glands and monitor my eye pressure. I am hopeful that I can keep my existing meibomian glands free of keratin, and potential blockages. Never been on antibiotics for MGD. Prefer to try anything other than steroids. I do not want any eye surgeries to take care of cataracts. Still using fish oils, and eye GLA's to help keep up Omega 3's and 6's. Never tried Intense Pulse light or gland probing. Have you?

Sazy, Both really, in that she gets eye surface flareups when the MGs are suffering. We're not sure whether she would have eye inflammation without the on/off MGD, like you, but it looks like she would. However, people who manage their rosacea well seem to fix their eyes.

The cause is obviously skin that looks like mostly p&p rosacea but some docs think looks more like periorificial dermatitis, which flares up. So that's probably something overactive to various invaders concentrated around the places of greatest immune response, isn't it, whether flora, fauna, chemical. I was interested to read that more men are triggering perioral dermatitis now more of them use 'skin products', so that needs careful thinking about. Acne antibacs, steroid creams and suncreams have been the worst offenders [ref Medscape News]. Periorificial dermatitis is more recognised in children than rosacea, but a difference in pathogenesis between the two has not been identified so they might be same or similar.

So we treat this as hypersensitive eyes. After intervening on flareups, we reduce to minimum and things look pretty good and we're on a maintenance regime for the eye surface and MGs, always vigilant and thinking about possible triggers.

It's like skin sensitivity behaves and this is why the derms are saying to us 'use anything that works'. Although they avoid thinking about the eyes and focus on getting her looking OK and the Ophth find that absolutely infuriating, as I do. Things work well on skin, then you react to them because there's been too much. Or we can slowly build a tolerance, eg use a skin antibac 2/wk and increase. It's tricky to do this for someone else. This is why I've found it helped so much to get educated like people do here and from Dr Google, and think about this ourselves, then find receptive docs to talk with, like you do.

We saw a kind Paed Rheumatologist for thoughts about autoimmunity and to see if he recognised anything in early stage, but he couldn't find anything obvious although he even tried some genetic testing. Sometimes rosacea types show up on HLA B27 but that's not uncommon. And this is the problem with less known autoimmune pathways. As he said, we don't know much about systemic inflammation responses yet. (He is a saint to support children in rheumatology; we saw bad adolescent juvenile arthritis in his clinic, and there will be uveitis, so we are counting our blessings and thanking him very much for having a look at LM.)

Also there's a judgement call on what a positive or out of range actually means since we've all got kinky DNA and immune responses one way or another. But you had some anti-nuclear antibodies (ANA) to something? What was that?

Blessings, Can you talk to your eye doc about cataract risk? It's an important conversation. It's a difficult conversation but it feels better when it's out there. Your tapering regime sounds familiar and very good to me. Are you still taking fish/flaxseed oils and comfortable with your tear substitute eyedrops? And using wraparounds to maintain moisture? Something else they try to get the MGs going is a sub-antimicrobial dose of oral antibiotic although no one knows why this works sometimes. So it's a question of gently keeping the MGs and eye surface good now the inflammation's under control to bring about the spiral of comfort and healing.

[littlemermaid]

Blessings, No we haven't tried gland probing but I guess it wouldn't be out of the question if it seemed like a solution as an adult (she's still a young teen). For the obstructed MGD which had infected with small chalazia, we cleared the glands very well on a short course of Azyter (azithromycin). I know some US eye docs like AzaSite in pulse doses eg with 4 wk breaks but I guess that is a judgement call by Duke on what might help the various symptoms without damaging the eye surface more. I know some docs prefer to wipe it along the eyelid margins. It is so dry indoors with the heating on, isn't it. Does eye protection help you?

[blessings]

I tried azithromycin, but I put a drop in my eyes before going to sleep. I reacted to the azithromycin, azacite, with eye inflammation. Never tried just wiping along eyelid margins, but I will still be getting it into my eyes. Currently, I do not need eye wraps. I reduced my Dex to 1 drop per day, and then stopped after 6 days. I do not want to become dependent on steroids. I am interested in having a opth. express my glands once a month. I also have not tried an antibiotic as a way to stop the hyperkeritin process that blocks the glands. It is beneficial to network with others to see what helped. I am using restasis, and that does not irritate my eyes. Management is the best approach, and I hope that there is a cure in the future. Thanks for all your suggestions and support.

Blessings, No we haven't tried gland probing but I guess it wouldn't be out of the question if it seemed like a solution as an adult (she's still a young teen). For the obstructed MGD which had infected with small chalazia, we cleared the glands very well on a short course of Azyter (azithromycin). I know some US eye docs like AzaSite in pulse doses eg with 4 wk breaks but I guess that is a judgement call by Duke on what might help the various symptoms without damaging the eye surface more. I know some docs prefer to wipe it along the eyelid margins. It is so dry indoors with the heating on, isn't it. Does eye protection help you?

[sazy123]

what does a positive Ana result mean? I have one but haven't been to the ryhemy yet about. I tested negative for sjogrens on the blood test but that's not always accurate. I.suspect auto immune because I have chronic inflammation which has to be auto.immune as it doesn't respond to anything. I've ruled out allergies and it's only my inner eyelids. Ocular rosacea is also an option... I have very mild skin rosacea. Can't.hardly see it. My glands aren't blocked though. I've always had somewhat dry throat. After 9 years I still don't know what's causing it or have much relief. Eyelid inflammation seems to.be harder to treat than surface inflammation ...from what I've read of peolses experiences on this website. Drops are aimed at the surface.

Lm ...can you pm me the name of your eye doctor and process of seeing him?

[littlemermaid]

Hi Sazy, We're in a Paediatric eye clinic ATM, although like everyone, we've seen a lot of eye docs.
www.moorfields-private.co.uk/Consultants If I was coming back to UK with this and felt in a bad way, I might consider a consultation here for advice (£400) with someone who advertises for eye surface disorders while researching the options NHS.
www.nhs.uk/Pages/HomePage.aspx The NHS website is very good on services and conditions if you can find your way around. NHS Direct by phone were non-starters for my questions on what paed eye service is available and referral pathways, but NHS Direct by email were excellent. Any trouble, talk to local Patient Liaison Service based at regional hospital (PALS).
www.cks.nhs.uk/home NHS Clinical Knowledge Summaries - help us on referral criteria (daft things like GP criteria are not to refer red eye until after 3m of tinkering for allergy or bacterial with no eye exam, whereas if we see any high street Optometrist their regulations dictate they must refer direct to Consultant in hospital eye service asap)
www.drfosterhealth.co.uk/ Dr Foster website for finding out who's who and where, lists everyone's private and NHS practices should we be stuck on waiting lists. Also now starting to put up performance indicators.

Our access to Oxford Eye Clinic, which is where we should've been, was originally blocked by our first cornea ophthalmologist, Mr MisdiagnosisAndMedicalNegligence. LM's optician, Mr NoIdeaWhatThisIs, recommended our GP, Dr DepressedAndShouldn'tBeWorking, to refer to Moorfields NHS, which GP practice refused 'because she hasn't had advice of a local consultant to be seen in tertiary referral'. She could not be triaged by the regional NHS ophthalmology service private provider monopoly because they did not want a paediatric licence to practise.

I think my best option originally to get out of this shambles would've been Moorfields Private just for diagnosis. At the time I was lucky to find Mr LifeInTheFastLanePaediatric in private practice nearer home, got a sensible diagnosis and a paediatric NHS hospital referral from the GP practice on his recommendation. But then loads of other people manage this fine and are more lucky with knowledgeable and current local hospital eye docs.

So it's a question of researching what's available locally and seriously considering living and working near a good regional eye clinic (even LifeInTheFastLanePaediatric suggested this for long term).

[sazy123]

Hi Sazy, We're in a Paediatric eye clinic ATM, although like everyone, we've seen a lot of eye docs.
www.moorfields-private.co.uk/Consultants If I was coming back to UK with this and felt in a bad way, I might consider a consultation here for advice (£400) with someone who advertises for eye surface disorders while researching the options NHS.
www.nhs.uk/Pages/HomePage.aspx The NHS website is very good on services and conditions if you can find your way around. NHS Direct by phone were non-starters for my questions on what paed eye service is available and referral pathways, but NHS Direct by email were excellent. Any trouble, talk to local Patient Liaison Service based at regional hospital (PALS).
www.cks.nhs.uk/home NHS Clinical Knowledge Summaries - help us on referral criteria (daft things like GP criteria are not to refer red eye until after 3m of tinkering for allergy or bacterial with no eye exam, whereas if we see any high street Optometrist their regulations dictate they must refer direct to Consultant in hospital eye service asap)
www.drfosterhealth.co.uk/ Dr Foster website for finding out who's who and where, lists everyone's private and NHS practices should we be stuck on waiting lists. Also now starting to put up performance indicators.

Our access to Oxford Eye Clinic, which is where we should've been, was originally blocked by our first cornea ophthalmologist, Mr MisdiagnosisAndMedicalNegligence. LM's optician, Mr NoIdeaWhatThisIs, recommended our GP, Dr DepressedAndShouldn'tBeWorking, to refer to Moorfields NHS, which GP practice refused 'because she hasn't had advice of a local consultant to be seen in tertiary referral'. She could not be triaged by the regional NHS ophthalmology service private provider monopoly because they did not want a paediatric licence to practise.

I think my best option originally to get out of this shambles would've been Moorfields Private just for diagnosis. At the time I was lucky to find Mr LifeInTheFastLanePaediatric in private practice nearer home, got a sensible diagnosis and a paediatric NHS hospital referral from the GP practice on his recommendation. But then loads of other people manage this fine and are more lucky with knowledgeable and current local hospital eye docs.

So it's a question of researching what's available locally and seriously considering living and working near a good regional eye clinic (even LifeInTheFastLanePaediatric suggested this for long term).

LM, thanks for the information. The NHS is a mess isnt it? LOL

Ive been used to the easy access to eye docs with my US health insurance (i did have top insurance though- its not easy for those on medicaid or with lesser insurance) for the past year. Choose an opth, book, get blood work done at the same hospital the same day if need be. Wait for results, refer to a rheumy.

Did you see any decent opths (not peads) previous to seeing the peads opths?

£400 for a consult?????? Is that right. I saw a moorfields doctor 5 years ago and i thought £160 was alot.

I think ill pass on that. Im actually right now- stocked up on restasis and azasite for a while and so far it hasnt really helped me anyway. I doubt they will be able to do anything else for me. If i get improvements from the current regime and i run out i will see them to get more meds.

As far as looking into this ANA thing- i can do this through the NHS? Any NHS rhyeumatologist will do? or do you suggest i try to get a referal on the NHS to a better one in london?
Again as far as dry eye goes- what else can they give me?

I might not have a concrete diagnosis, but i have tried every drop and dry eye strategy going which is usually aimed at all dry eye patients regardless of the cause. Plus, ive given up on getting a ''diagnosis'' from eye doctors. Most just ignore my eyelids, do the ussualy tests and tell me i have severe dry eye (some say mild, baes on lack of surface damage- we know thats wrong) if it was ''mild'' i wouldnt be in constant pain and dryness.

Have you tried high doses of Vit C for your daughter. I am currently trying: Lypo-Spheric Vitamin C. Which i got from amazon. It comes in gel packets- it is absorbed into the Liver to maximise bio-availability, as it by passes the liver.

There is some research of high doses of Vit C helping dry eye among contact lense wearers- reducing inflammation and MGD. It precents histamine release, for those who have allergies.

I take 3000mg a day.

Info on here:
http://www.cure-dryeyes.com/Vitamin-C.html

[littlemermaid]

Sazy, No we haven't found an Anterior Segment eye doc in adult service yet but we are looking at large regional hospital eye clinics who can refer internally, as you say, because currently we are in 3 different hospitals for Neuro, Derm, Rheum because it's not available under one roof Paediatric in tertiary referral.

As Blessings says, we don't want to become dependent on steroids. But what's the alternative. We have reduced to 1/wk dexamethosone and that's good. We might try 1 /10days. If there's a flareup, we'll have to increase again. LM's main ophth, Mr GentleAndExceptional, is optimistic we might be able to wean off eventually if we can keep things good. We're trying to avoid the eye surface damage she gets in flareup.

I've got cyclosporine 0.06% in aqueous base but not used it (new this Autumn from Moorfields Pharmaceuticals - no one needs to use that Optimmune vet 0.2% formulation anymore if they don't like the oil base). We've used the AzaSite equivalent, Azyter, on a 6 day short course and it cleared the MGs but made the eyes sore.

How are you using the Restasis and the AzaSite? Currently having conversations with docs about this. I think one danger is we all end up self-medicating on random serious meds without being able to see the eye under a microscope or work out what's making things better/worse, and even bringing about severe changes. Even Moorfields do this with 3/4m follow-up, but it's nice to have ongoing dialogue with someone experienced and accessible that you like and help on the regime.

Not sure about the Rheumatology testing. Ygwair went to London eventually - she diagnosed herself off the internet, then paid the Prof because she couldn't get NHS referral. Lulu is struggling with regional service in SE and has got Sjogrens referral to SW just for diagnosis through NHS Choose & Book because regional Rheum is unsure. The kind Paed Rheum says there's so much unknown yet and so much to discover about immunology and only a few available certain tests that much has to be done on symptoms only with AI conditions. He also says there is no one doc for all this metabolic medicine unfortunately and was supportive about what we'd noticed with diet (thanks for the Vit C info).

I'm trying to follow research in steroid-hormone-lipid metabolism, which is where our main problems seem to lie, but the science is hard. So the best plan has been working out 'rosacea' triggers. Another problem is that steroid or immunomodulator interventions might have upset the system more and the Ophth agree with me that using steroids on the face for the p&p rosacea could be a disaster, esp if it is perioral dermatitis, which is now suspected to be an immunology dysfunction. The pathogenesis for triggering worse derm/eye conditions like Stevens-Johnson with topical/oral antibacs and steroids and immunomodulators is not understood.

This is why I like our main Paed Ophth - he is thinking about the steroids and how allergy and sensitisation works and thinks we might be able to regularise the response eventually.