Dipyridamole Discussion

Claire,

Thank you so much for the pictures. Your eyes look great. There to the point were they look really white. And congrats on the good news about your eye doctor visit. This is exciting for everyone. We're all cheering for you and thanks for sharing invaluable information. Would you say your eyes are almost to the point where you might stop all eye drops except for maybe tears?

IIAwarenessII - nice to hear from you. I'm sorry to hear about your pingucelas. Admittedly, I was petrified when I first start using the drops as my tear film was so inflamed I was worried about making things worse. I would never push someone to use these drops unless they were completely comfortable in doing so and even then, I'd warn, it does take a while to see the results. It tore me into shreds waiting week after week to see whether they'd work or get worse, I feel fortunate to be in this position to say they are helping.

Admin - thank you! I'm such a perfectionist that - although they look so much better than they once did - I want to keep going until they look more how they did before the inflammation as there are still a few pesky veins left which was caused by the irritation. It sounds very petty but when you're so hung up on the appearance of your eyes - like I've been the past year - you want to make them look the best that they can. I see the trial lady used it up to a year in MedInSights report so I may - now knowing medically I'm in the clear - keep on going with them for another month or two and hope it keeps on getting better.

For those reading these posts that have begun their journey with the drops please report your feedback on here! It is so helpful to others, whether it is good, bad or in between! I think it's so important to share our experiences in order to help/comfort/inform others and we need to hear from other users (as I'm sure people are getting sick of hearing from me!) so get in touch! X

Hi everyone,

My issues are so similar to many of yours.  In my mid 20s and started to develop a ping and now a few years later despite following doctor's instructions have four, with the original one constantly very red and irritated.  A specialist diagnosed me with MGD and advised me there wasn't much that could be done other than surgery in the future.  Anyway, I'm terribly self conscious about it and it's negatively affecting my career and social life.

I started using the drops 3 weeks ago and haven't seen much of an esthetic change at all, but have noticed slightly less dryness feeling throughout the day.  I will say that I was using them 5 times a day very regularly until a few days ago - due to a busy schedule and a bit of frustration at not seeing results.  

I'm really happy to have found this forum so that we can all share our progress.  Is it possible to get pictures from some of you showing the change?  These drops are not cheap and I need some motivation to stick with it!  

Thanks in advance!

Hi

Hopefully this image link will work.

https://i.servimg.com/u/f19/19/21/54/07/image17.jpg

That's the before/after with my eyes. Unfortunately that's the only 'before' picture I have, so I do appreciate the lighting is different but that's all I have to compare them to!

Mimi - it does take a while to see improvements. I know patience is really a virtue in this scenerio as I completely understand what it's like to have a career/social life affected by this. The fact they are getting less dry is a good thing.

Claire,

Thank you so much for the photos! I'm so happy you've had such great results - that's a pretty drastic difference. You've helped to keep me hoping. Do you mind if I ask how long it took before you saw those changes?

Hi Mimi.

You're welcome! I've been using the drops for nearly 5 months now. I took the 'after' pic the other day.

Thank you for the picture Claire, great progress!

I just ordered the drops yesterday. I will report back regularly with before and after pictures.

Hi everyone,

I just read a post on the Dry eye forum from a user called Fitch.

See below:

just wanted to let everyone know i had a terrible experience with the dipyridamole drops and i have already communicated it to Shira at MedInsight. I was in the process of improving with my corneal neuralgia in January of this year. I used the dipyridamole drops from buyldn.com for the month of February and it set me back taking my pain from a 6 to a 9 or 10. It is now 3 months later and i still have not gotten back to where i was in January and still have pain of 9 or 10 in my eyes. My MD thinks the drops set off my corneal nerves. I highly regret using the drops and i am out $120 as well which only adds insult to injury (literally) I wish i had never seen the thread on dryeyezone so i am glad you are moderating it now. With all respect to ClaireW I highly regret using these drops and would caution anyone who wants to try them to do your homework first. I did my homework and even had the blessing of my eye MD and still wound up hurting myself unfortunately.

I'm posting this because A) I don't want this forum to be solely about my positive experiences. reactions to this drop can range dramatically, I don't want to create any false impression that it will work for everyone. In fact, as we can see here, it's had the opposite effect. B) to remind you to exercise the upmost caution if you do chose to use these. As I said taking them is at your risk but I would advise consulting a doctor first or at least making an opthmologist aware that you are using them. The difficult thing is that the drops, as a vasodilator, naturally causes some irritation and redness on application to the eye, which does go away but it'll be harder to pinpoint whether you are having a bad reaction to then or not. If you feel any pain which is more than a slight stinging when using a drop I would immediately stop and inform Shira. c) with any new drug or medicine there is always going to be people who react well and people who might end up suffering more. It's a heavy gamble so just be aware of all the info out there and report back here if there's anything we need to be aware of. I don't want to be seen as a one woman band promoting anything that could be potentially harmful just because I had a positive experience. Just be careful!

We appreciate you posting this negative review Claire, as all feedback is important.
However, Mr. Fitch intended to cure his condition of "corneal neuralgia" with these eye drops. Nowhere in the patent or case studies of the dipyridamole eye drops does it mention corneal neuralgia.

All of us thus far on this forum have a similar condition, pinguecula's, inflamation, pterygium, neovascularization, redness, chronic dry eye.....and this is what the dipyridamole eye drops have been intended to be used for.

Mr. Fitch's condition of "corneal neuralgia" is a completely separate eye condition.

Hi,

I guess I felt partly responsible as I was leading on the thread and now he's suffering! Just want people to be aware of all the possible side effects. I very much hope that fitch's experience is one bad exception in a sea of positive stories - but just thought it'd be wise to share.

I definitely understand and it was important to share. Once again, we appreciate you posting this negative review Claire, as all feedback is important about these eye drops.

My intent was just to inform guests of the condition Mr. Fitch was attempting to cure (corneal neuralgia) with these drops, in contrast to the condition most of us on this forum suffer from (pinguecula's, inflamation, pterygium, neovascularization, redness, chronic dry eye.)

I'm sorry for FItch. It's terrible to walk back.
It's a warning to all who will test these drops.
Remember that this is a tool not widely tested.
Make sure it has gone all the way to contain your inflammation.
Have clear goals and read all the posted material on the subject before.
And when you decide to use, be fully aware that you are going on your own.

I would like to make a chart, like a pyramid (or otherwise), showing which are the tools available for those who have dry eye and link tools with topics that discuss the matter. In this graph, the drops would be in the upper portions, one of the last tool to be tested. Maybe open a topic for all help.
I think that could help newcomers avoid falling into traps, using advanced tools before trying the basics.
What do you think, Claire?

Hi Andre,

It's a good idea - not sure how to put it into practice in here. You will need to speak to the creator of this forum (user Admin).

Hello everyone!
First of all I want to say that I'm very glad I've come across this forum! It's so cool we can share our impressions on dipyridamole eye drops with each other!
Secondly: ClaireW, you've got great results, it's really  amazing Other few months and, hopefully, your eyes will be all clear!
As for me, I'm going to finish the second bottle of the drops. I mean I've been using the drops for about 4 weeks. I can't say I see some visual changes in my eyes but what I'm sure of is that I don't feel any discomfort or dryness anymore. So, I hope, the drops are working for me!

Hi Ayza, I'm glad to hear your eyes are feeling less dry, just wondering how many drops you are applying?

I'm using 3 drops per day, I can't see any visual results but my eyes are definetly less dry, this could be due to the drops or I've just started using diluted tea tree foaming wash!! But hopefully this feeling continues. So nice to wake up and have fresher eyes that usually continues throughout the day. Please may it last.

I apply about 2 drops in the morning and then twice in the evening when I get home after work!

Hi,

Has anyone tried to be in touch with Shira recently? I've been emailing but have had no response for a while.

I have not heard from Shira recently either. It's been 2 weeks+

Hey guys I'm new, and I have some questions I'm thinking of buying these as I'm 17 and I have bilateral ptergium and I was wondering will these eye drops clear the redness away,I've had ptergium since I was born and also if I use these drops will at any stage the redness come back or make my eyes worse

Hi john,

We are all consumers on here so it's very hard to say whether it will definitely clear all your redness. Through my experience I have found it to be helpful, but I don't have a ptergium so I couldn't say for you.

The best thing to do is get in touch with Shira (her email address is given on here in one of the first posts in this thread) as her company trialled this drop on a lady with a ptergium. You can find a link to this article showing this lady's progress in one of the posts I placed on here.

I'd read up as much as you can about these drops before you start, and inform your doctor what you're about to do if you chose to do so.

Thanks and also it would be really helpful if you have before after pictures

Hi john,

I posted an image link in this thread - just read back through my posts!

Thank you so much and I contacted shira but she Hasent replied

Hi,

Some of us are waiting on Shira at the moment.

I've posted some answers provided by the researcher Moshe a while back regarding these drops (I reached Moshe through Shira). For those who haven't seen it:

Are the clinical trials still ongoing for these drops? If so, can you only participate if you're based in the US? (many of us are from the UK, Northern Ireland and Spain).

Trials have not yet started. Although we have been contacted by several universities seeking to perform such trials, they still require research funding to cover the costs of recruitment, data collection, analysis, ethical review board applications, regulatory permission etc. Usually such trials are sponsored by the company developing the product being tested. Since no company has yet licensed this invention, it is unlikely that any formal trials will be launched soon.

Nevertheless, there is a ray of hope. Since the compound being used, dipyridamole, is well known and has been approved for the past 50 years, doctors may freely prescribe it and compounding pharmacies may prepare it. We are aware that some doctors in the US are doing so, but we don’t have specific details concerning outcome.

Q2. From the patent we can see it has been tested on a lady with a pterygium, has there been any trials with a pinguecula? If so, to what result?

Pinguecula and pterygium are closely related. Pterygium usually starts with a pinguecula which progresses. We are aware that other patients are using it for these purposes but we don’t have a data collection team in place to collect and curate this information. We have been primarily focused with its use for dry eye.

Q3. What is the level of knowledge of these drops among ophthalmologists? Are they hopeful? Have you received support?

We have received many inquiries and requests for sponsorship of trials. Ophthalmologists, especially surgeons, are very keen to avoid surgery. Sadly, all research nowadays is either commercially driven or sponsored by donors. When one of those options materializes, we are sure there will be plenty of doctors willing to join in running trials.

Q4. How effective are these drops with people who suffer from underlying medical conditions like blepharitis or MGD?

We don’t yet know. It has been used with patients suffering from several anterior segment eye disorders with excellent symptomatic results. These uses have included dry eye but we don’t know whether it is meibomian gland dysfunction related or of other causes.

Q5. Do the drops work as a vasoconstrictor? If so, is there the risk of rebound redness? Are there any known side effects?

No, dipyridamole is in fact known to be a vasodilator. However we don’t know if at the minute dose we are using, it acts as a vasodilator or not. No studies have been previously done at this dosage level. We are using it at a dose 25,000 fold lower than the oral dose. This is a far greater safety of margin than other eye drops such as Vigamox or Restasis, which are either 1/400th to 1/800th of the oral dose. Considering that dipyridamole itself is a very safe compound, it is not surprising that we have not encountered side effects other than some stinging upon application to the eye.

Q6. Are there any benefits apart from the cosmetic enhancement of the eye?

Yes, we have seen very significant reduction in the pterygium tissue itself. Dry eye symptoms as well as hyperemia have resolved too.

Q7. When is it likely the drops will be released on the market? Is there a waiting list for those interested? (If so, how do we get on the list?) Will it be available to those outside the US?

To take such a product through the regular drug approval pathway generally costs around $13 million dollars, and takes 2- 4 years (since it is a new use for an approved drug--compared to $3 Billion and 14 years for a new drug). However, since the dosage of active ingredient is quite small, we have found out that in several countries it will qualify as a homeopathic dosage concentration, thus easing the regulatory pathway. In those countries where it can be recognized as a homeopathic formulation, it could be made immediately available. In order to facilitate this, it is necessary to first determine optimal formulation that can provide stability at room temperature. We have been working on this issue for quite a while, supported by a donation to cover formulation work and analytical testing. We believe we now have a formulation that is reasonably stable, but we are looking for further financial support to carry out longer-term stability studies and improved formulation development. As soon as a manufacturer or compounding pharmacy is found and licensed to manufacture the drops, we will let everyone on our mailing list know.

Q8. Will the preservative free version be available at the same time?

It is precisely our effort to avoid preservatives that has led to a longer development effort.

Q9. On the dry eye forum (which we are all on) some members have used compounding pharmacies to formulate their own homemade versions of the dipyridamole drops. Is this risky? Are we better waiting?

We cannot advise concerning this. The main concern would be safety and sterility. Obviously if people are experienced in pharmaceutical preparation and know how to take all safety measures, this may be low risk. We would advise that compounding pharmacies should ideally be involved in preparing these drops as sterility is essential.

Q10 If some of us were keen to donate towards your funding of this research how would we do this?

We are would be delighted to accept donations which could help facilitate further research. We have the ability to accept tax-deductible donations in the UK and the USA.

Q11. Is there a way we can be informed when the drops are ready to purchase?

Yes, as the emails that have been sent out to each of you have imparted, we will let you know when and where they are available for purchase.

Q12. How do these drops work on diminishing red veins/pings and pterygium (is there a simple science behind it?)

We don’t know all the answers to this question. It requires a lot of further research. However this drug possesses many therapeutic elements; it is an anti-oxidant, anti-inflammatory, anti-proliferative, anti-angiogenic, anti-neoplasmic, and anti-viral, among other known features it possesses (this is a link to our full text article: http://www.karger.com/Article/FullText/362113).

Thank you Claire for sharing that valuable information. That answer's soo many question's a lot of us have.

Great news! Shira contacted me just a few hours ago! She was on vacation So I'm sure she will be responding to everyone soon.

Even better news...I received the eye drops yesterday!