Pooling our resources

[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.

[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!

[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??

[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

[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

[Guest]

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 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.