I can't cope anymore

[NotADryEye]

.... what Rebecca said....!

[Rebecca Petris]

....they suggest I take a more positive approach to managing the symptoms myself.

It's hard to swallow it when it's packaged that way of course, but there's plenty of validity to the advice itself... because the fact is, cornea MDs do medical treatment, not symptom management advice. They don't have the knowledge and experience for the latter and they don't consider it their job. There are exceptions of course, I'm just talking mainstream.

Hence DEZ Lots of lay experts here who collectively provide a sort of ocular surface equivalent of vocational rehab at no charge : constant advice on eyewear, computer use, travel, what to do in winter, spring, summer, fall, troubleshooting eyedrop problems, brainstorming more questions on diagnosis, etc. The breadth & depth of knowledge of a lot of longtime users here leaves me in the dust

In a lot of cases the best recipe for getting on well with an MD is not expecting any of this part of dry eye care from them BUT finding opportunities to educate them about it so they can do a better job for the next person.

[lizlou29]

Hmm...so you know those appointments that you come out of slightly more confused than when you go in? Well I had one of those today.

Not sure I should keep mentioning the ophth's name but as friendly as he was I was expecting a longer appointment and felt quite rushed. I was in there 15/20 mins incl. a 5 min schimmer's test.

In the last 6 weeks two consultant ophth's have told me my TBUT is 2-3 seconds and I've seen a recording of it and would agree with this. However today I was told it's 8/9 secs and 'nearly normal'. He did say that there is clearly an underlying issue as no 29 year old should have 4 punctal plugs and still have dry eyes. He was very surprised that I had a negative ANA and RF.

He does MG probing and looked at the glands quickly but said they were producing oil of an okay consistency so he would be wasting my time and money in doing the probing. Bit confused by this as i've been told that there is capping on the glands and the oil is thick. I would have thought he'd be one of the most knowledgeable about this though.

I asked about Demodex and he said for everyone with rosacea he recommends a 3 week trial of tea tree facial wash, shampoo and shower gel. He said he couldn't see the rosacea on my face but I can cover mine quite well with make up and I don't get pimples. Btw, I never wear mascara or anything when I go to my appointments but I couldn't face going through London with no make up on whatsoever, they just have to take my word for it that I have rosacea.

He prescribed oral Azithromycin for 10 days. Has anyone tried this? He said if it doesn't help to carry on with Doxy afterwards.

He didn't seem overly interested in things i'd already tried, maybe because they clearly hadn't helped??

The good news is is that there is no corneal staining, he expressed surprise about this as has everyone else I've seen. He said the reason that eye drops don't provide me relief is because I've got no dry spots on the eye where as I've been told by others to use drops every 20-30 mins because of the AD.....

He told me to call his office with any other questions. Don't you just wish you could get two good ophths in the same room for longer than 20mins to get some agreement on things??

Rebecca, I've had better advice on here than I've had from most specialists. I really hope in the future more of them can thinks outside of the standard treatments. There is no cure so why don't they know more about protective eye wear, cold compresses for comfort etc?

[littlemermaid]

Don't you just wish you could get two good ophths in the same room for longer than 20mins to get some agreement on things??

Ha. Have you ever been a playground monitor? lol

[lizlou29]

Ha ha. I know, what was I thinking.

Rubbish eye day today. Actually managed to go for nice meal after the appointment without too much pain. Think I'm paying for it now though!

[NotADryEye]

I was in there 15/20 mins incl. a 5 min schimmer's test.?

Are doctors in the UK incented to see lots of patients? I've found that in the US the doctors, all specialties, that are in single physician practices tend to take more time with patients then those in large group practices where efficiency and patient volume is more important then anything.

In the last 6 weeks two consultant ophth's have told me my TBUT is 2-3 seconds and I've seen a recording of it and would agree with this. However today I was told it's 8/9 secs and 'nearly normal'. He did say that there is clearly an underlying issue as no 29 year old should have 4 punctal plugs and still have dry eyes. He was very surprised that I had a negative ANA and RF.?

Hard to say why there is such a disparity in TBUT between previous and latest. But yes, there has to be some reason why. And you are still working out that thyroid problem, right? My T3 just tested at nearly the lower limit. I am sure it is a factor for at least some of us.

He does MG probing and looked at the glands quickly but said they were producing oil of an okay consistency so he would be wasting my time and money in doing the probing. Bit confused by this as i've been told that there is capping on the glands and the oil is thick. I would have thought he'd be one of the most knowledgeable about this though.?

Things do change over time but again, it is hard for us to say not being able to see you ourselves and for you to say not being able to see yourself either. If we assume this latest doctor knows what is what, then this should be something good. And also it is good that he did not probe if you are not a candidate.

I asked about Demodex and he said for everyone with rosacea he recommends a 3 week trial of tea tree facial wash, shampoo and shower gel. He said he couldn't see the rosacea on my face but I can cover mine quite well with make up and I don't get pimples. Btw, I never wear mascara or anything when I go to my appointments but I couldn't face going through London with no make up on whatsoever, they just have to take my word for it that I have rosacea.?

Yes, it is best not to wear makeup to appointments. When I wore makeup to cover up my rosacea I would wash it off in the doctor's office restroom and then reapply it before leaving.

[QUOTE=lizlou29;86793]He prescribed oral Azithromycin for 10 days. Has anyone tried this? He said if it doesn't help to carry on with Doxy afterwards.?Azythromycin is an antibiotic. He must have some reason for this. Doxy might be to reduce inflammation. Is that what he said? What dose did he prescribe? For how long?


[QUOTE=lizlou29;86793]The good news is is that there is no corneal staining, he expressed surprise about this as has everyone else I've seen. He said the reason that eye drops don't provide me relief is because I've got no dry spots on the eye where as I've been told by others to use drops every 20-30 mins because of the AD.....?[QUOTE] That's right. It is pointless to treat something that is not there. Did you ask about conjunctival chalasis?

I am so sorry to hear that the appointment wasn't as productive for you as we all might have hoped. But, you have some new things to try. And there are those outstanding systemic issues that likely need to be addressed. You just have to keep pressing on and pursuing every option.

[NotADryEye]

cornea MDs do medical treatment, not symptom management advice. They don't have the knowledge and experience for the latter and they don't consider it their job. There are exceptions of course, I'm just talking mainstream.

I agree with Rebecca. Overall the understanding of the disease, and the pain we go through, amongst those who treat it is just not adequate. That is why I am so grateful for my doctor who not only treats the medical conditions but also continuously gives me advice on how to manage and cope with each and every one of my countless symptoms.

[littlemermaid]

Actually caused me some issues with my GP as an ophth sent a letter to her saying that my eyes were "white and quiet" but I was still complaining about pain and they suggest I take a more positive approach to managing the symptoms myself. Hence to this day my GP thinks I'm exaggerating things.

Yes. Even after being seen as an emergency and having to use anaesthetic drops just to get the eye open, we get 'eyes look the best I've ever seen her' in the tertiary Consultant letter. We've also got reported neuro-ophth symptoms like severe headaches and vision obscurations absent from the medical records and Consultant report letters, so we did have a big fail in Neuro review.

This is partly why our GP practice doesn't believe me either on the specialist stuff or help with systemic symptoms or support tertiary Consultants' prescriptions for eyedrops to the CCG. Some GPs are well out of their depth managing systemic conditions in Shared Care with specialists and tell me they don't know how, where or why to refer and prescribe. Our tertiary Consultants advise us to use A&E for assessment now, and GPs say they can't do paediatric NHS Consultant-Consultant referrals and we need to pay Private for access, which I find hard to believe. Many GPs are struggling now, worldwide I understand, but yours has been quite supportive with referrals, Lizlou.

I can read between the lines normally, but any idea why Ophth write like this? Our CCG just advised me to pull all our Notes, test results, scans (NHS website 'request medical records', already been doing it 4y but interesting advice) and carry them round, ie not just Consultant letters. If you do that, keep a Summary Sheet. Very useful.

We also keep a Symptoms Diary. Hope these ideas help.

Lizlou, yes we self-manage, read up, share experience, and try different things, but many people also like regular support and backup with an Optometrist who works 'portfolio' in hospital service (ideally your regular eye unit) and high street, more familiar with conditions treated in hospital, better qualified to help us. In UK they refer to Ophthalmologists anywhere and some even know who does what. The bonus is that if they see a problem, professional regulations dictate they must refer. Some Optometrists are NHS commissioned for Shared Care for eg glaucoma checks, which we qualify for if we are on steroid eyedrops.

It is confusing getting different suggestions and remedies, but we are lucky to have the opportunity to find our own way forward, in consultation with our favourites.

But I agree with NotADryEye ~ a specialist who is big enough to help us think round systemic symptoms and offer thoughts and advice beyond 'my job is just to keep inflammation down to maintain the cornea and the rest and what happens later is somebody else's problem', that is an excellent doctor. The more LM and I find out about what this actually means, the more supportive and grateful we feel

(NHS England Clinical Reference Group for Specialised Ophthalmology Services, 2013 http://www.england.nhs.uk/resources/...g/group-d/d12/, includes format for clinical letters in Service Specifications for anyone interested. Current professional guidelines http://www.rcophth.ac.uk/, http://www.college-optometrists.org/, http://www.nice.org.uk/)

[lizlou29]

He said Azithromycin has a stronger anti-inflammatory effect so to try it for 10 days and stop the Doxy. He said he has seen it help people with rosacea but i only have the occasional flushing type and I've read it doesn't help with that.

I asked about conjunctival chalasis. He didn't actually answer. Just said my corneas look ok.

I still don't get the whole eye drops thing. He said I don't get the benefit as my tear film is ok even though I have severe dryness where as others have said my eyes are so dry I need to use them every 20 -30 mins. They make my eyes feel worse so the only time I use them is when I wake up at night and can't open my eyes without them. I worry that I am making things worse by not using them.

[NotADryEye]

He said Azithromycin has a stronger anti-inflammatory effect so to try it for 10 days and stop the Doxy. He said he has seen it help people with rosacea but i only have the occasional flushing type and I've read it doesn't help with that.

I asked about conjunctival chalasis. He didn't actually answer. Just said my corneas look ok.

I still don't get the whole eye drops thing. He said I don't get the benefit as my tear film is ok even though I have severe dryness where as others have said my eyes are so dry I need to use them every 20 -30 mins. They make my eyes feel worse so the only time I use them is when I wake up at night and can't open my eyes without them. I worry that I am making things worse by not using them.

The Azythromycin, like doxy, make have an anti-inflammatory effect on the mg's. Not sure. Not sure where else. If/when you go back on doxy, what dose did he prescribe? Knowing the dose might help us understand if it is for the anti-inflammatory effect or for something else.

Re: conjunctival chalasis - maybe this is another case of missing it, or maybe you don't have it. Next time you see an ophthalmologist, ask about it again. One optometrist, told me I had it and even showed it to his students who were in the office that day. That was only one, who ended up helping me not at all, in addition to the wonderful doctor I have now who has helped me so much.

I don't think I understand the "use drops" vs "don't use drops" advice at all. I would say, if they help and make you feel better, use them. But if you are using them every 20 to 30 minutes then someone should be helping you more then just saying to use drops.

When you wake up, and you feel like you need drops, is it because your eyes are sticky?

[lizlou29]

He said to go back on the Doxy at the dosage I was on before which was 100mg for at least 3 months for the anti-inflammatory effect. If I have 10 days off the Doxy is it like starting from scratch again? I'd had no benefit as yet from the Doxy anyway.

When I use the drops at night it is because of the extremely intense dry feeling and I can't open my eyes without them. I've never had stickiness just dryness.

[lizzyk]

Hi Lizlou, i am so sorry and very disappointed that your appointment did not give you as much as you had hoped. I was considering going to see this person myself but now im wondering is it worth the expense/hassle. I too cannot understand why all the conflicting advise/results from all these professionals, it is so frustrating. The thought of putting up with these eyes of mine for the next 20/30 years is quite overwhelming

[lizlou29]

I refuse to think that this is it for my eyes now. I've been told to accept it but the paim is different every day, some days are better thsn others so there must be a reason for it. It's hard to accept something when you don't know the cause of it. A year sho my eyes were occasionally irritated but now it's debilitating. Yes I know i'll probably always have a problem with my eyes but if I were told this is it then life really isnt worth living. Hope is important to me.

If MG probing is something you really think you need then I think you should see him. He seems to be the most experienced in the UK.

[littlemermaid]

He seems to be the most experienced in the UK.

Is that what you think, Lizlou? I'm thinking 10 mins is not much for first Private appointment? We get that first with Optometrist doing full Orthoptic clinical exam with lenses etc, and taking history. Then we're in there with Ophth 20 mins+, often well over if there's problems.

Hope is important to me.

Love that. Thank you

I too cannot understand why all the conflicting advise/results from all these professionals, it is so frustrating.

Now we are self-managing more effectively and reading up about how people here have had success with different methods, this doesn't bother me any more. Even docs within one team have very different approaches, don't they. It's fascinating to see protocols being developed. And we patients can help medicine a lot with that with our experience.

It's been a huge relief for a very experienced doc to say 'we just don't know yet' and offer a few off-piste thoughts and monitor some new treatments. I absolutely love that if they are offering to work together with us. It leaves the field wide open for future progress and hope, and it shows great honesty and integrity, and includes us in the research.

What I can't stand is when less experienced or knowledgeable people pretend they know what they are doing, fob us off, and obviously Do Not Care if they cause damage. I really don't expect people to have all the answers but not anything less than a good 'consultation' and current treatments.

[NotADryEye]

He said to go back on the Doxy at the dosage I was on before which was 100mg for at least 3 months for the anti-inflammatory effect. If I have 10 days off the Doxy is it like starting from scratch again? I'd had no benefit as yet from the Doxy anyway.

When I use the drops at night it is because of the extremely intense dry feeling and I can't open my eyes without them. I've never had stickiness just dryness.

Interesting re: doxy dose. I use to be on 100mg 2x per day. That went on for 8 months or so and no gut flora. I'm now on only 20mg 1x per day and taking a probiotic daily. The 20mg for me seems to be plenty. But we're all different.

And you're quadra plugged?