Pooling our resources

[irish eyes]

Hi Ian

No, Azasite isn't available in Europe yet. The developers are a small organisation and need to find a suitable partner in Europe to distribute it.

Concerns are exactly as you said - the preservative element - plus of course there might be other issues that have not come to light as it hasn't been around that long. Of course we probably only hear the positive things about it - who wouldn't want to tell others that their eyes were feeling better? Like anything, there are bound to be those who will not be helped by it.

I have registered an interest with Azasite so they will alert me when it becomes available in Europe. I cannot get too optimistic these days but I will give it a try if the opportunity arises.

Hi Helen

Azasite may not be suitable for everyone but it has helped many people with blepharitis. It was developed as an anti-bacterial drop to fight conjunctivitis
and many blepharitis sufferers have derived immense benefit from it. However, its long term use is still in question and trials are still ongoing.

I wasn't aware this is available in the UK, I've seen quite a few posts about it recently.

I would be a little cautious about long term use, based soley on the fact that the product prescribing information (from the link above) says that the product is preserved by BAK - not something I would be prepared to use long term.

Still if people are getting a relief of their symptoms it may be worth asking your GP if there is a PF version available.

Just my thoughts

Ian

[irish eyes]

Hi Helen

Azasite may not be suitable for everyone but it has helped many people with blepharitis. It was developed as an anti-bacterial drop to fight conjunctivitis
and many blepharitis sufferers have derived immense benefit from it. However, its long term use is still in question and trials are still ongoing.

I must admit that I have never heard of the tear film rupturing after an allergic reaction. Do you mind me asking if problems are confined to your eyes?

My tear film is a little bit healthier than it was about 5 years ago but it's still not brilliant. I also have `conjunctival folds' - which is rather like my eyes wearing something that is too big!! That adds to the problem I have with artificial tears because they don't coat the eye and they cause a few problems by settling in the folds (if that makes sense). There is some kind of a procedure available but one of the consultants advised me against it; he was honest enough to say that he had performed this procedure when it was in its development phase - and there had been some drastic consequences. No decision needed there then.



http://www.azasite.com/Patient/index.html

[Helen26]

Hi Helen

I have spent so much time & money on my eye problems that I have `suspended' any further approaches to medical people - whether it be mainstream or alternative. The last `fleecing' was from a homoeopath so you can tell how desperate I was.

Out of interest - you find Restasis helpful? When I asked the hospital about it some years ago, the idea was scoffed at - but perhaps things have changed a little on that score. My GP is understanding (and accepts I probably know more than she does regarding eyes) so she might be worth chatting to.

Regarding trials - quite recently, I saw a posting on this site from a lady who had Lasek done in Russia. In her quest to find help, she came across some people who wanted volunteers for a trial - but I cannot think what part of the forum it is on. (She shared this information with us even though it didn't suit her). The name of the firm - Michael Guillon (?) sounds familiar and I think the lady might have been called Lena. (Sorry for being vague). I sent them an email to enquire about these trials but didn't get an answer back - which I take as a bad sign.

If you also suffer with blepharitis (like I do) I am afraid that the drug Azasite is not available in Europe yet. The developers in the US are only small and they are looking for suitable partners in Europe before they can make it available. Certainly if I hear of any I will let you know. I would be happy to be a participant.

Hi

Yes, I find Restasis really helpful. It doesn't completely eliminate the inflammation in my eyes but it has vastly improved my tear production, to the point where most days my eyes no longer feel dry. I tried unsuccessfully to obtain it from a doctor in the UK but gave up and now I order it over the internet. Send me a PM if you would like the website address.

I have been to see Michel Guillon and whilst he is obviously very knowledgeable about dry eyes I didn't feel like he could do anything more for me, and he didn't mention any suitable trials when I asked him.

I do suffer from minor blepharitis but this is a secondary condition really. My main problem is a mucous deficiency (my tear film ruptured after a severe allergic reaction) and unfortunately there doesn't seem to be any way to treat this or the inflammation the lack of mucous causes. What is Azasite, I haven't heard of this?

Helen

[odydnas]

I haven't forgotten about this thread. YGB, can you tell us more about this advocacy org? I am not a Lasik patient, but I am very interested in learning more. I would like to see an org like that for dry eyes by all causes. It could even be a growth out of DEZ or another org like DEWS.

Is anyone seriously interested??

[YGB]

A new patient advocacy organization is coming soon!

I've been working with a group to get a not-for-profit patient advocacy organization established to take on LASIK issues such as dry eyes, night vision disturbances, cataract surgery after LASIK, etc.

One of the goals of the organization will be to bring a voice to all of the patients who have been damaged by LASIK to the FDA and eye organizations. We're hoping the organization will be ready to roll-out within the next month. It will be vitally important that people interested sign-up for this organization since there is power in numbers. I will post more news when I have it. Thanks!

[irish eyes]

Hi Helen

I have spent so much time & money on my eye problems that I have `suspended' any further approaches to medical people - whether it be mainstream or alternative. The last `fleecing' was from a homoeopath so you can tell how desperate I was.

Out of interest - you find Restasis helpful? When I asked the hospital about it some years ago, the idea was scoffed at - but perhaps things have changed a little on that score. My GP is understanding (and accepts I probably know more than she does regarding eyes) so she might be worth chatting to.

Regarding trials - quite recently, I saw a posting on this site from a lady who had Lasek done in Russia. In her quest to find help, she came across some people who wanted volunteers for a trial - but I cannot think what part of the forum it is on. (She shared this information with us even though it didn't suit her). The name of the firm - Michael Guillon (?) sounds familiar and I think the lady might have been called Lena. (Sorry for being vague). I sent them an email to enquire about these trials but didn't get an answer back - which I take as a bad sign.

If you also suffer with blepharitis (like I do) I am afraid that the drug Azasite is not available in Europe yet. The developers in the US are only small and they are looking for suitable partners in Europe before they can make it available. Certainly if I hear of any I will let you know. I would be happy to be a participant.

[Helen26]

Do you meant participating in trials for new drops or research in general?

Whilst I was regularly attending the hospital, I asked about trials/research but no-one seemed to know of anything that was going on. The doctors were usually kind but patronising - and muttered a lot about hormones. (Perhaps there just wasn't a category for me to fit in?)

I heard there were trials going on at the University of Ulster for a new type of artificial tear, so I wrote asking to know more. I received a patient information form with an invitation to write back if I had any questions (which I did) but have not heard anything further. (I might chase them up tonight)

I am sure that any of us signing up for trials / research would be 100% committed and compliant. I have had plenty of practice.

I enquired about the University of Ulster trial and found out that the drops are just a form of Sodium Hyaluronate (not sure if I've spelt that correctly!). I was also told that I would need to stop using Restasis, which has helped tremendously with the dryness so I don't want to give it up.

Does anyone know of any other trials currently taking place in the UK (particularly for anti-inflammatories or mucous-restorers) or any doctors who are involved in trials?

I am so sick of so-called dry eye specialists in this country. Last week I went to see another consultant (the 7th I've seen!!) - the best suggestion he could come up with was to take migraleve (even though I know my dry eyes are nothing to do with migranes!) I'm rapidly running out of money (and patience with doctors in the UK).

Helen

[irish eyes]

You are so right!

I don't remember my condition being taken that seriously when I started out with it. Now I am that bit older, there will be no sympathy at all.

I can predict what will be said....." ....Women of your age blah blah blah.....".

Treatment doesn't seem to be any further ahead. My blood pressure is soaring just thinking about it.

[kitty]

I agree. You tell someone that you have Dry Eye and they look at you like, "Well, then, use some Visine". They have no comprehension how debilitating this disorder can be. I know of a lot of older women, post-menopausal, who have DES and just accept it as a fact of life, another body part drying out due to hormonal changes. They suffer in silence. It would be wonderful to have some sort of action committee that would move towards some real change in how this disorder is perceived, , diagnosed, treated and most importantly, prevented.

[odydnas]

I think a big problem is that many people (including scientists and clinicians) do not realize how big a problem this really affects us and how our quality of life can be very difficult. I feel like a lot of people do not take this condition seriously...and therefore, there is no active research into helping us out, and no social services for us.

I have never been a participant in a clinical trial because there are none for me. THAT is one of the problems we face. In terms of lobbying to bring out treatments to the public, how can that work when there are rarely any treatments? I mean...dry eye isn't a hot topic like cancer when every scientist is jumping on board and working on basic and translational research. I want dry eye to be a hot topic...I mean I think it could potentially be market where a lot of money can be made, with the increase in dry eye and all.

Let's just say we were to organize into a group. What specific goals would you want to achieve?

One big goal I would like to see is that this is considered a REAL disease, not some little annoyance and have health insurance cover our OTC eyes, eyewear, and etc.
Another goal I would like is to lobby for funds to direct to scientists and clinicians who do dry eye research.

[irish eyes]

Do you meant participating in trials for new drops or research in general?

Whilst I was regularly attending the hospital, I asked about trials/research but no-one seemed to know of anything that was going on. The doctors were usually kind but patronising - and muttered a lot about hormones. (Perhaps there just wasn't a category for me to fit in?)

I heard there were trials going on at the University of Ulster for a new type of artificial tear, so I wrote asking to know more. I received a patient information form with an invitation to write back if I had any questions (which I did) but have not heard anything further. (I might chase them up tonight)

I am sure that any of us signing up for trials / research would be 100% committed and compliant. I have had plenty of practice.

[brd888]

Dews

DEWS is a global workshop meeting to bring tear film scientists together. It is sponsored by the TFOS (Tear film and ocular surface society)
TFOS's remit is to:
"Advance the research, literacy & educational aspects of the scientific field of the tearfilm and ocular surface
Organize and coordinate international conferences, workshops and seminars to promote better understanding
Stimulate interactions among members, attract basic scientists, academic clinicians and industry representatives with diverse interests and expertise"
These guys are obviously working toward treatments, cures, research etc for tear film diseases (yahoo!). Therefore we don't need to do anything in this area which isn't already being done.
We also have the "Congress of International Society of Dacryology and Dry Eye" which met in Istanbul this year.

At our level I think the best we can do is lobby to bring out treatments to the public, demand better care and more frequent consultations...
On the research side if we could find out about trials and maybe even participate. Has anyone on this board ever been a participant in research? Why not?
How do we find out what TFOS is up to and how can we contribute?

Cheers,
Bruce.

[bernmee]

I don't have any infoto contribute but I am following this thread with interest.

Bernadette

[odydnas]

Thanks Rebecca for explaining the whole incorporation thing. Getting organized is definitely the main thing.

Bruce, great idea! That was in terms of what I was thinking.

Do you know if DEWS is just for eye care professionals, or does it include patients as well? What do you think about having membership for patients to be a part of DEWS, so if we were to petition, we would have a lot more credibility, with medical professionals on there?