How to get cyclosporin and other new treatments in Europe

[np1981]

sorry to insist but we've had the same experience here in France... nobody will listen to you unless you organise yourselves by launching an association

Kakinda, I'd be interested in knowing this too. Like Susie, it seems to me like the kind of thing I would like to get involved in eventually, but at the moment things are just too busy.

What has changed in France as a result of your efforts?

[Helen26]

No, I havent seen him personally, Ive contacted him but I think he's overpriced on drops and everything - he also said that his was the only place where you could get smartplugs (punctal plugs) and that the NHS wont put them in due to the cost. They do. Had I not have looked into this I could have paid a ridiculous amount of money for plugs. Beyond plugs and drops, I dont think there's much more an optometrist can do for you, although the ones that have a special interest in dry eye are usually really up to date and may be able to advise on other practical things you can do to help your eyes.

Andrew Matheson is really nice & seemed really clued up. Ive spoken to him a couple of times, he does all his dry eye consultations in Alresford, Hants. Google him and have a look on his website. (sorry cant remember the address off-hand).

I agree that David Crystal's drops are overpriced. I didn't realise that you could get SmartPlugs on the NHS though - I may look into that, although the Oasis Soft Plugs I've got now aren't causing me any problems. I've ordered all my Theratears stuff from Mathesons though I've not actually spoken to Andrew Matheson. I know that an Optomotrist is restricted in terms of what they can do, but I would just like some more advice on diet, supplements and other practical things I could do to help. I might try Michael Guillon because it sounds from his website like he could give me some advice and he also carrys out a detailed analysis of the tear film to identify the exact nature of the problem, which is more than the NHS do. I've spoken to his receptionist and he's fully booked up until September but I may try to get an appointment then. I'll let you know how it goes.

[Helen26]

After 9 months I went to see Dr Tseng in Miami (I have a cousin in Florida whom I stayed with). He said I had both aqueous and lipid problems, as well as conjunctivochalasis.

Personally, 4 punctal plugs have helped my tremendously (2 didn’t make any diference), also I sleep with my eyes slightly open so I wear a Tranquileyes mask at night. These two have definitely helped, where as all the other numerous things I have tried have been useless (including steroids) or at least their effects have been very small. I still take Omega3 ‘cos it probably won’t do harm, and I think (like others probably) that its worth continuing to take for its other health benefits.

I must say I am feeling better now than I have since the problem started, but there is still some way to go. A few months ago I thought I would never find relief from the burining/stinging. But there is still some inflammation and I am still constantly aware of my eyes.

I think the problem is that every patient seems to require personal care - what works for one person may not work for another. Here in the UK they seem extremely inflexible regarding treatment – if what they try doesn’t work they give up quickly or imply that your problems really isn’t worth complaining about. Out of interest who did you see on the NHS?

It was just a consultant at my local hospital in Preston, Dr Battachanga I think his name was. He was pretty useless. The first time I saw him he said he thought my eyes would probably just get better because I was relatively young and didn't have arthritis! And wen I asked him if it was wise to put plugs in given the amount of inflammation I had he just said "Oh, yes dear" in a rather patronising manner!

I agree that what works for one person doesn't always work for another - you said that steroids didn't help you, but they helped me tremendously, I was completely symptom free when I was on them, although I realise that this isn't a long term solution. I think the plugs have helped a little also - I might consider having my upper ducts plugged, I didn't realise that this could make such a difference.

[kakinda]

answering np1981 and Susie,

Well, having an association doesn't change everything overnight... but it does change people's behaviour towards your requests (notably administrations, docs, etc, etc). I will now meet pharma representatives because of it, i get answers from parliamentarian I wouldn't get otherwise, etc.

I could write tons on this and give you more ex. but I need to work on other things

There's really no straight answer to your questions on time, it depends on how many you'll be, but if the 4 or 5 or you in this thread decided go more ahead it could be just 2 or 3 hours a month to get something done...
it'll take the time you decide to put into it, really, there's no better answer

I started alone and I still work alone most of the time...
the right question is are you going to do something about it or simply wait for someone do it instead?... you can only be certain to get some results from the first option.

If not, you can always rely on the fact that someone may one day decide to do it for you or that the miracle drug will be available soon.

I have chosen to be pro-active because I don't intent to live like this for ever... not without trying to change things.

What has the waiting done for you?

Think... and tell if you want to try to set up a Keratos section in the UK for instance... but you'll be defining the priorities, the time you'll put into it, etc, etc... or even create "DE association UK", whatever...

I think I will not insist on this again... it's really up to you.

Take care
Kakinda

[sazy123]

I'm not due to go back to the hospital until October but I will mention Restasis when I do. But I think I'll have a battle on my hands - the consultant won't even admit that there is a problem with my tear film or the extent of the inflammation, he just simply said that my eyes weren't producing enough tears. And I rang an international pharmacy and they said Restasis costs Ł200 per month to import - so there's not much chance of the NHS paying for that. The thing that worries me most is that I know there are lots of drugs in the pipeline that will hopefully be approved over the next few years, but how long will it be before we get them in the UK. I think I might have to emigrate!

Helen: I can almost garentee that you wont get restasis on the NHS. But still you should ask anyway, dont give them an easy time.

It sounds like to me that if the steroids have helped you becuase you have inflammation then you stand a good chance that restasis will help. You just need to get it, and thats the problem obviously. The options are: you could go private, but try to find out 'ring before hand if they are open to perscribing restasis through an international company. TBH, i dont know of any personaly who have becuase my experiance going private was not good either. I have messaged ian off this site coz his doctor perscribed restasis for him (think in london). Or the other option is flying to the states and get it, which is what i am doing eventually. Dr lacknay in new york is very good at answering questions by email. This way you can get a better diagnosis as well and otherthings that we cant get here. I am looking in to testosterone cream. TBH, i think it would be cheeper to do it this way. One box of restasis can last 3 months if kept in the fridge (one vile can last 3-4 days), so you wouldnt have to buy as much or what ever..

With regards to these treatments in the pipeline, yes we probaly wont get them in the UK. But we should be able to get it if we fly to the states in the same way. The NHS is so crap here many people with different health problems fly to other countries to get treatment, so its quite a regular occurance.

Is micheal mcculian a optometrist or a an opth? Its a shame that dry eye Optomotrists cant perscribe things coz they know so much more and they can spend more time with you working out what will work. not a one approach fits all approach like the NHS.

kakinda sorry to insist but we've had the same experience here in France... nobody will listen to you unless you organise yourselves by launching an association.

it's a bore but someone will have to do it...
I did in two countries so far for Keratos...
who will in the UK and elsewhere in Europe?..
if anyone wants to create a Keratos section in their country in the meanwhile I'm available.

Take care = Take a Stand
Kakinda

Kakinda, i agree that we need to take a stand, but at the moment i really need to concentrate on sorting my self out and earning money so i can do this but it is something i would like to be involved in.

i think i have said this before, but i think that we would face more problems in the UK than other EU countires. Becuase im not sure how aware you are of the crisis that the NHS is in. Im no expert but im always hearing about the deficits, hospitals closing, people not being offered life saving treatments, nurses not being employed, lots of doctors made redundant etc. The Primary care trusts (for loacal areas) decide whether to accept new drugs, mainly based on cost, and they are always looking for things to cut back on becuase of NHS 'over spending.' So the point is, dry eye is not very highly prioritised compared with other medical conditions and other drugs needed for these conditions. All im saying is it would be a challenge. not that im not up for a challenge, but it would be one. may be im just pesimistic.

[kakinda]

Hi All,

(Hi Sazy) Well we have a bigger deficit in France than you have in the UK, but it's true that we have a more "social health policy" tradition... and then the state decides to cover the deficit. Labour or Tories will need to realise that hospital will never make money, there will always be a deficit but if they want functional individuals it may still be worth to have propper hospital running.
Furthermore, most countries are in worse state in that regard; Portugal for instance (much much worse).
But, this really not the point I wanted to make. Because, the worse the situation is, the more you need to be organized (thus, an association is even more needed).

So, yes, you're being pessimistic… before trying... especially that you could be 4 or 5 to tackle this thing (a lot than us when we (I) started) from what I read in this board. I think I have spent more time on fora like DEZ than working from Keratos directly… lately… so I really need to spot insisting on this…and maybe I should spend a little less in all the fora.

When I say you it doesn't just you Sazy... I do understand the money issue however ... here my problem was really time because I was on my own for that, and other did participate financially to the limited costs of creating an association (let's say about 40 euros to create in... so divided by 4 or 5, it may not be impossible to cover those costs). Do you know how much it would cost to do it in the UK? could someone check it?

But I’m sad to see that although exchanging experience is useful, after some time, it seems to me that we begin complaining for the sake of complaining… and really not into that after 15 years of severe DE-related issues. So it useful if we work on new things, learn new things, seek solutions but otherwise… I guess it’s really more useful for the newcomers, whom I am glad to help if I can, but I wish we could all do something..for all of us.

I understand that some people feel better because they simply had a chance to talk. Unfortunately, that’s not really my case; at least it’s not enough, I need to try to change things I am unhappy with (to put things in lighter tone). Not criticizing anyone in particular but I have the feeling that we are in part responsible for the situation we’re in… we need to be pro-active, we need to complain to docs, not just amongst ourselves , etc, see what I mean?

Again, this will be your (all of you) choice…
Ok I’ll be concentrating on Keratos for some time, and maybe on the research and “activist” threads and the like, but I’ll be available again in late August if you decide work on …something.
Again, if you’re European, you want to be pro-active, launch your association or create a Keratos section, I’ll be available.

Take care,
Kakinda

[SusieD]

Kakinda, i agree that we need to take a stand, but at the moment i really need to concentrate on sorting my self out and earning money so i can do this but it is something i would like to be involved in.

i think i have said this before, but i think that we would face more problems in the UK than other EU countires. Becuase im not sure how aware you are of the crisis that the NHS is in. Im no expert but im always hearing about the deficits, hospitals closing, people not being offered life saving treatments, nurses not being employed, lots of doctors made redundant etc. The Primary care trusts (for loacal areas) decide whether to accept new drugs, mainly based on cost, and they are always looking for things to cut back on becuase of NHS 'over spending.' So the point is, dry eye is not very highly prioritised compared with other medical conditions and other drugs needed for these conditions. All im saying is it would be a challenge. not that im not up for a challenge, but it would be one. may be im just pesimistic.

This is what Im saying, its not as simple as be proactive or 'sit and wait', sometimes life gets in the way and you have to deal with more pressing issues first.

[kakinda]

ok too bad we can't have an UK counterpart...
I'm still not fully convinced that all of u (together) in the UK can't do more than that... as said it takes time to participate in a forum too....
never said it was easy, my life sure isn't (neurotrophic k, severe, DE, scleral use, one salary for two, un-accomodating boss)...
there are no simple choices...perfect solution... do all or do nothing... it's always in-between, really
we all have pressing issues but as long as we manage to find 30 minutes a week to work on something ... it's still somethings.
Hopefully someone will tackle this someday... see u then,
Take care

[SusieD]

I dont think setting up something like what you have done is quite the same as banging a two second reply in a forum. I only use the internet when necessary for my degree and I just check in here while Im on or before I log off. Im refuse to feel guilty because my circumstances wont allow any more at this moment in time.

Besides If Im honest I wouldnt have the foggiest idea where to start with something like this.......... and you need to know what you're doing.

[sazy123]

Hi kalinda

As i said i would like to get involved in this, and maybe soon i will.. I have some depression issues to deal with at the moment due to the fact i took a morning after pill and am dealing with alot of guilt, so abit of time and i will think more seriously about it.... In the mean time i will read over your posts and emails and see what would be a viable thing to start with. To be honnest though i have no business skills, and do not have a clue where to start.. You can obviously help with that but the system is obviously different to france.
On the positive however what i do have is some time this year coz i probaly wont be starting a course for abit.

np1981: do you have any ideas?

When I say you it doesn't just you Sazy... I do understand the money issue however ... here my problem was really time because I was on my own for that, and other did participate financially to the limited costs of creating an association (let's say about 40 euros to create in... so divided by 4 or 5, it may not be impossible to cover those costs). Do you know how much it would cost to do it in the UK? could someone check it?

When you say 40 euros to start, what do you mean? start a website? Is a website the best place to start?

I just made a website for my parents restaurant/pub:
www.georgeanddragonburpham.com
looks good i think! it was really easy as well!

Again i would like to do this soon, but if others get involved it would be easier.
Also it would give you some great skills.

[kakinda]

Hi,
I understand... I never said it was a decision to take overnight easily... but yes, I believe it's the intelligent thing to do...
because, we need help, no-one will listen to us if we stay foot, so draw your own conclusion... either you (or hopefully someone else will) do it, but in this world better to rely on oneself... but otherwise nothing will happen.
I've seen the word guilt a couple of times but really it shouldn't be... either you do or not because you think it's what needs to be done...
I would never do this under such considerations such as guilt...

40 euros = for the registration fee, i.e. to create Keratos
As for the website, I can offer you some space on Keratos- English if you feel like having a try a it.
take care
K

[np1981]

All I know is that if there are people who are new to this problem who get frustrated with inadequate treatment here in the UK, they may not know where to turn. Once they find a place that can be a good source of info they may find that they have options (in a way kind of like this forum has helped me) and therefore find hope.

What exactly are the objectives of Keratos are far as you are concerned kakinda? What is it that you are trying to acheive? What determines whether you are successful or not? What are you trying to change in France? Things could definately be improved in the UK and if having an association helps to acheive that then it is worth getting involved in.

The other problem is that DE can get you down, and in such a state its sometimes difficult to go to work let alone become pro-active. You kind of think "oh whats the point" and lose motivation. Thats not really an excuse its just thats how I feel sometimes. I do realise that only by being pro-active will anything actually change for the better. I guess some people are better at coping than others.

Nik

[kakinda]

Hi, I'm posting this on Keratos:

I represent a European association on ocular surface diseases and lachrymal dysfunctions such as severe dry eye and neurotrophic eye, based in Lyon (France) and Lisbon (Portugal), called Keratos. We are currently trying to gather as much information on future dry eye-related research and possibly new treatments.

Our main area of research interest is:

- Secretagogues

- Mucomimetics (mucin), lipid replacements

- Dry-eye hormonal therapy

- Nucleotides and dinucleotides

- Growth factors (corneal re-innervation) and other wound healing substances and therapies

- Dry eye-related anti-inflammatory and immunosuppressive/immunomodulating therapy

- Stem cells, amniotic membrane and autologous serum-based therapies

- Therapy for meibomitis, rosacea and blepharitis

- And eventually really innovative non-preserved eye-drops for dry eyes and allergies…


Have a look at our webpage (especially if you can read French; the English part still needs translators and proof-readers ... there's only so much one (me) can do, that's true!

http://keratos.free.fr

I can't get into detail (time-wise) but Keratos as changed a lot a things, for instance laboratories and docs reply to our queries, they really want our opinion, for instance Novagali or Horus Pharma requested it, a lot of things like that...
We also want to change how society looks at DE and related problems (see above), how disability administrations evaluate these problems...
well, we still have a long way to go but surely you know what I mean if I said that al least we now are able to opne doors, inform properly our members (newletter), etc...
we are working on reimbuserment issues (scleral and hyaluronate unpreserved drops, etc)
Anyway, I the idea pleases you I am more than willing to help you create a Keratos section in the UK.
We have got one in Portugal (it's less active that in France but hey things take time so the sooner we start tackling them the better).

Yes, dry eye get you down, as do a lot of unknown diseases (society disregard), but this is precisely why we need to be pro-active... and you'll see when you start fighting you get less depressed...
use your "anger" and "pain" in a positive way to achieve things...
you don't know where to start? start anywhere on anything that may help anyone suffering from DES...
asking info from labs, talking to the right person within NHS...
things never excatly has plan and no you don't have to have a very precise idea of what you want to do to start something...
the first obvious thing is to get together and discuss priorities... something will come out of that.
what determines successful actions? either because you actually achieve something or simply because you have a better knowledge of the problem and are able to inform your members better... This question is really to broad to be answered properly in a forum.
Tkae care
K

[Helen26]

[QUOTE=np1981]All I know is that if there are people who are new to this problem who get frustrated with inadequate treatment here in the UK, they may not know where to turn. Once they find a place that can be a good source of info they may find that they have options (in a way kind of like this forum has helped me) and therefore find hope.

I am one of those people! I'm very new to this whole dry eye nightmare and I'm already getting incredibly frustrated by the NHS and their attitude to dry eye. This forum is helpful but I would like to get involved in something more practical to help people in the UK. I guess if there are 4 or 5 of us in the UK who are willing to do this, we should be able to achieve something together. But where do we start?

[Helen26]

[QUOTE=sazy123]One box of restasis can last 3 months if kept in the fridge (one vile can last 3-4 days), so you wouldnt have to buy as much or what ever..
Is micheal mcculian a optometrist or a an opth? Its a shame that dry eye Optomotrists cant perscribe things coz they know so much more and they can spend more time with you working out what will work. not a one approach fits all approach like the NHS.

I didn't realise that one box of Restasis could last 3 months if kept in the fridge. That makes it much more affordable. I'm going to try to track down someone privately in the UK who might be able to prescribe it for me.

It's true that optometrists seem to know much more about dry eye. I spoke to Andrew Matheson the other day and he was very helpful. He said that if I went down to see him there are other things he may be able to prescribe for me - but I'm not sure what these are or whether they would help, obviously not Restasis!