Author Topic: Lacriprep  (Read 3539 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...

markt

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Re: Lacriprep
« Reply #12 on: December 03, 2018, 11:50:30 AM »
https://www.youtube.com/watch?v=vIifRNkm8lc

Just wanted to share this video with the crowd for awareness sake.

Tears Solutions is making a big push to gather enough data to conclude current ongoing Phase I/II trials for Lacriprep.

This means getting a few more patients into this study; or statistically "enough" of a population from which they can derive a signal of Lacriprep' s Efficacy/Safety to present to the FDA and proceed.
 
As this is considered an "additive therapy" to the FDA, Tears Solutions has the benefit of doing tailored or abbreviated versions of clinical trials for Lacriprep.

Truthfully, the sooner our patient community gets involved... they quicker we will all benefit from this medication being licensed and available.

Check out their Facebook page for the study, or contact one of the many trial sites.

https://www.facebook.com/LacritinAndDryEye/posts

http://tearsolutions.com/

If you are concerned about not meeting the study criteria; apply via the FDA Expanded Access Program.  That is exactly what it is for, and I can tell you from personal experience that you can make it work... the key is having your Opthalmogist's practice' full support.   

Regards,

Mark

 
« Last Edit: December 03, 2018, 11:57:07 AM by markt »

Sharon

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Re: Lacriprep
« Reply #13 on: December 06, 2018, 11:59:11 AM »
It was good to finally get to see you Mark,
thanks for sharing!  :)
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...

Deb 27

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Re: Lacriprep
« Reply #14 on: December 11, 2018, 08:26:10 AM »
Perhaps there is not an interest here because people are using something that already works. Restasis works very well for me.

Big Pharma has very few "cures" for people, just treatment, that they make a ton of money on. When something comes out as a new drug, very few people can afford it. Those are the realities. They might offer coupons for a few years, then you are screwed. Those are the realities of what big Pharma.
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