Mass Eye & Ear MGD Trial

[Gretchen]

Hi All,

I just saw this today and wanted to post it for any MGD victims in the NE. They don't name the drug, but it sounds intriguing:

The purpose of this study is to determine the effectiveness and safety of a topical anti-inflammatory medication for the treatment of MGD. This medication is given in an eye drop and is a synthetic form of a protein that naturally occurs in the body.

More information and trial recruitment information is at:

http://www.masseyeandear.org/researc...ls/meibomitis/

Gretchen

[clairvoyant]

I really like them up there. I talked to the girl in charge of the study. Very nice lady. I think you have to live close by to participate in the trial but I think anyone can get the medicine if they go see the doctors there. They have good lawyers she said.

I think it may take up to 3 months to work but from that link you posted it might be more effective than doxy. They use that medicine in RA, think it is pretty weak for that though.

Never heard any reports from patients. Would be nice to know if anyone is on this one.

[Gretchen]

Med name?

MGD -

Did she give you the name of the med? And is it an eyedrop or topical ointment. Couldn't quit make out from the description that is posted.

Thanks,
Gretchen

[mike838]

I really like them up there. I talked to the girl in charge of the study. Very nice lady. I think you have to live close by to participate in the trial but I think anyone can get the medicine if they go see the doctors there. They have good lawyers she said.

I think it may take up to 3 months to work but from that link you posted it might be more effective than doxy. They use that medicine in RA, think it is pretty weak for that though.

Never heard any reports from patients. Would be nice to know if anyone is on this one.

I went to mass eye and ear when I had my biggest issues with my eyes. They found nothing wrong. I then went to another dr in boston that said wow you have one of the worst cases of mgd I have ever seen. MASS EYE AND EAR ARE NOT GOOD DRS! My Dr in boston Ma got me on track and I have never loked back at the horriable exp I have had with mass eye and ear since. I actually argued with the dr to look again at mass eye and ear and he told me nothing was wrong! only to hear a week later im in rough shape! good luck with this place and there treatment and there great lawyers! They are going to need there Laywers. I would not send my Dog there let alone hope to be treated there! good they have good lawyers since they are not good eye drs!

[clairvoyant]

Might have been a different doctor

I think it binds to pro-inflammatory cytokine Interleukin-1 and neutrializes it. In effect, reducing the inflammatory cascade. It works different than doxy I think cause doxy goes in and reduces the inflammation already there. This is the next generation of medicine, called biological medicine.

The drug for RA is called Kineret and the protien is called Interleukin-1-Receptor Antagonist or IL-1Ra.

It's topical, I think in eye drop form. It might be pretty good.

You can get ahold of them here:

http://clinicaltrials.gov/ct2/show/N...haritis&rank=6

Not sure about the previous guy's expierence. I surely believe it though, I have encountered similar. I think there is one main doctor you would see though if inquiring about this medication. And I would think if you have posterior blepharitis and went there for this treatment they would have no problem giving it to you. Just make sure you talk to them.

[Gretchen]

Know what you mean

Mike -

Trust me, I know about going to "world class" eye clinics and getting the brush off. I was told at Stanford that I had Sjogren's (I don't) then I was told that I had posterior bleph but that the Dr would not prescribe doxy because there were too many side effects. A joke.

But there is a Dr Reza Dana there that has done a lot of work on ocular surface disorders and is at the forefront of studying anti vegf for corneal neovascularization.

Regards,
Gretchen

[mike838]

Well I decided since I was local and despite having a bad experience that I would make an appoitment. I will be going there to be evaluated for the testing on monday and will let you know how I made out. The lady seemed nice and that dr you listed is the one doing the study so I feel batter about that. I am not sure how it will play out but they claim all paitients in this have made a 50 percent improvement on average. With those numbers sign me up lol. All I have at this point it hope.

[sazy123]

this sounds really interesting, there are some interesting things about for MGD all of a sudden, which makes a change from ''nothing'' but old fashioned compresses- not great for inflammation- only capped/toothpaste glands.

[Gretchen]

Good News

Mike -

I am glad that you are going to be evaluated. Whitney (the trial coordinator) seems very nice and sympathetic. When I spoke with her on the phone, she understood immediately when i told her that I had found nothing that consistently helped. I didn't need to explain too much...it sounds like she had already heard our tales of woe.

Google Dr Dana. He has done a lot. Good luck and keep us posted. 50% improvement in a clinical setting is pretty spectacular.

Kind Regards,
Gretchen

[Gretchen]

How Did It Go?

Hi Mike -

Just checking to see if you went in to see Dr Dana. How did it go, are you going to take part in the trial?

Regards,
Gretchen

[mike838]

They have me scheduled for the 18th of this month. they sounded nice on the phone and I am looking forward to the visit. I had used an eye drop so I had to wait two more weeks to get an accuret assesment. It sounds hopefull.

[sandra lee]

Hi Gretchen,Thanks for the info!Sure wish I lived in Mass. I hope this study has some promising results.Dr. Latkany mentioned autologous serum eye drops made form your own blood.Sounds interesting.How are you doing?Sandra lee:

[Eli]

Hey Guys,
I just wanted to mention that I have decided to participate in the MGD trial as well. I am scheduled for my preliminary work-up this coming Monday to determine my eligibility for the trial. I will keep everyone posted on how it goes.

[sazy123]

Hey, just wondering can one get the drops anyway without being in the trial?

Thanks sazy

[sanna]

Eli,

Let us know if you will be in the study, and how it goes.

sazy,

How is your eyes doing after the IPL treatment?


If you have MGD, will you have dry, red and itchy eyes? A person with MGD has very sensitive eyes right? Will you have red eyes all the time if you have MGD?