Author Topic: Lacriprep  (Read 529 times)

markt

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Lacriprep
« on: July 08, 2018, 03:59:15 PM »
https://news.virginia.edu/content/new-dry-eye-drug-first-aims-treat-cause-rather-symptoms?amp


Lacriprep is being trialed in my neighborhood specifically for Primary SS... anyone else participating or attaining via expanded access?  I am applying through the site in Ormond Beach, FL.

The scientific rigor behind this intervention is pretty compelling, check out the videos:

https://www.facebook.com/LacritinAndDryEye/videos/vb.1376039919276146/2025710027642462/?type=2&theater

https://www.facebook.com/LacritinAndDryEye/videos/vb.1376039919276146/2002993679914097/?type=2&theater
« Last Edit: July 11, 2018, 07:11:11 AM by markt »

markt

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Re: Lacriprep
« Reply #1 on: July 11, 2018, 07:13:18 AM »
Added some videos that may be of interest to folks on here (links to them on the Lacriprep Facebook page are shown above).

What I still do not understand is whether or not this is considered an immunomodulatory type intervention?  Regardless, it's a ophthalmic/topical solution...

jazzlover

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Re: Lacriprep
« Reply #2 on: July 11, 2018, 10:44:00 AM »
Sounds great!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

CureSjogrensNow

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Re: Lacriprep
« Reply #3 on: July 12, 2018, 03:18:31 PM »
Anyone try this yet?


markt

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Re: Lacriprep
« Reply #5 on: October 10, 2018, 11:54:41 AM »
Just picked up my set of vials from my Opthalmogist's practice today. 

As part of the first visit for the trial, I did a questionnaire, signed informed consent, did some baseline testing (vision, Schimer's test, ocular staining etc.).

I will let everyone know how it goes; naturally, some things I cannot share to preserve the integrity of the ongoing trials.

- Mark

PS: I am highly surprised that so many people on here have not shown interest or shared their experiences with trials such as this.  I will do my best to fill that void.

Sharon

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Re: Lacriprep
« Reply #6 on: October 10, 2018, 04:35:56 PM »
Good luck markt, do keep us posted.
Hope you don't get the placebo.
Unfortunately I cannot get accepted into any clinical trials since I'm seronegative.
Otherwise I would in a heartbeat.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

markt

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Re: Lacriprep
« Reply #7 on: October 11, 2018, 03:46:56 AM »
Hi Sharon

With this one, all that is required is diagnosis, and either positive lip biopsy report OR positive for SS-A/B antibodies.

Being SS-A/B negative myself, I am still considered qualified only because I did have the lip biopsy with focal lymphocytic sialadenitis.

.... so, talk to a site... they may well evaluate you and bring you into the study.


Linda196

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Re: Lacriprep
« Reply #8 on: October 11, 2018, 07:25:07 AM »
I've been in a couple of trials, but they all required a non-disclosure agreement. Only one released me from that agreement at the completion of my involvement.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
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Sharon

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Re: Lacriprep
« Reply #9 on: October 13, 2018, 02:41:01 PM »
I refuse to do a lip biopsy after hearing some horror stories from patients who had it done
and learning it's not always accurate in any case.
In my country we also don't have many relevant clinical trials going on.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

markt

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Re: Lacriprep
« Reply #10 on: October 14, 2018, 04:37:49 PM »
The biopsy turned out to be a non event for me; Hopkins literally wrote the standardized procedure for gathering and evaluating samples.  It only bothered me for several days... no loss of feeling or anything.  The reality is, that if you have any hope of being treated here in the States... you need it.  By treated, I mean with a biologic DMARD.  As you know most other treatments are in trials... and it also required for that.  So... with my back up against a wall... I did it.  There wasn't much else to lose.

In other news... this is my first full week without bandage contact lenses in a year for my dry eyes... that's all I will say about that : )
« Last Edit: October 15, 2018, 05:33:15 AM by markt »

Sharon

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Re: Lacriprep
« Reply #11 on: October 15, 2018, 09:08:30 AM »
It really depends who does the lip biopsy. It can be hit or miss.
If they ever do develop a worthy treatment on label specifically for SS I may do the lip biopsy,
but right now I get the same biologicals they currently prescribe for SS through my RA diagnosis.

So glad to hear those drops may be giving you some relief!  :)
Are they preservative-free?
Will you be allowed to continue them after the study ends?
« Last Edit: October 15, 2018, 10:47:10 AM by Sharon »
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...