Thread on dipyridamole drops under review

[lizlou29]

now, i dont know whether to order the drops or not...............

Can you discuss it with your ophthalmologist? I think it's best to let them know what treatments you are using/want to use.

[Guest]

Can you discuss it with your ophthalmologist? I think it's best to let them know what treatments you are using/want to use.

I completely understand you're very busy ATM Rebecca but I was just wondering if there's any progress with this? I'm eager to report updates but won't go till I see the green flag.

[KateIre]

I completely understand you're very busy ATM Rebecca but I was just wondering if there's any progress with this? I'm eager to report updates but won't go till I see the green flag.

Just wondering if there is an update?

[xpro]

Any idea when the thread will be open again? I had a bad eye infection and some new blood vessels appeared in my eyes. I need to get rid of them

[pennyparade]

If not-yet-approved treatments cannot be discussed here at the DEZ forums, that would greatly discourage me from continuing to visit.

I myself only found relief using Tacrolimus ointment - yet this is considered an off-label use of this drug: it's not approved for MGD or lacrimal dysfunction. Should my posts about my experience with this drug be removed? What about the people using honey on their eyes or antibacterial handwipes or castor oil? Should those posts be removed? How many studies will be required before a drug is allowed to be discussed here? Who will decide?

Loath as they are to admit it, the medical community is at a loss when it comes to treating Dry Eyes. They have no solutions and for many of us, the treatments offered do little to lessen the daily pain we experience. Most people come here because conventional treatments are failing them; they are looking for something more than Doxy, Restasis, and hot compresses - not because they are ignorant of approved treatments but because they have tried them and found little relief. If the DEZ cannot report and discuss the newest treatments (and I understand your predicament, Rebecca), than I suggest renewing the discussion on an anonymous forum, like Reddit.

[Guest]

If not-yet-approved treatments cannot be discussed here at the DEZ forums, that would greatly discourage me from continuing to visit.

I myself only found relief using Tacrolimus ointment - yet this is considered an off-label use of this drug: it's not approved for MGD or lacrimal dysfunction. Should my posts about my experience with this drug be removed? What about the people using honey on their eyes or antibacterial handwipes or castor oil? Should those posts be removed? How many studies will be required before a drug is allowed to be discussed here? Who will decide?

Loath as they are to admit it, the medical community is at a loss when it comes to treating Dry Eyes. They have no solutions and for many of us, the treatments offered do little to lessen the daily pain we experience. Most people come here because conventional treatments are failing them; they are looking for something more than Doxy, Restasis, and hot compresses - not because they are ignorant of approved treatments but because they have tried them and found little relief. If the DEZ cannot report and discuss the newest treatments (and I understand your predicament, Rebecca), than I suggest renewing the discussion on an anonymous forum, like Reddit.

Hi,

I feel that if the conversation cannot take place here then hopefully we can start a thread elsewhere. I currently have a lot of people getting in touch with me to hear my progress and I would like to share it on the forum. Still waiting for the green flag so I'll hold off till then.

Claire

[KateIre]

I 100% agree, and as its been approx 3 weeks confirmation either way Rebecca would be much appreciated.

Claire you have my email so let me know if there's a push for a different forum.

Kate

[nubirth]

Hi,

I feel that if the conversation cannot take place here then hopefully we can start a thread elsewhere. I currently have a lot of people getting in touch with me to hear my progress and I would like to share it on the forum. Still waiting for the green flag so I'll hold off till then.

Claire

i agree. i didnt know anything was wrong with discussing the eyedrops.

[Guest]

Hi Rebecca,

Is there any progress on this thread? I'm a regular user of these drops and I'm anxious to know and to hear of any medical concerns from professionals - if there's a reason to be wary I'd like to know why! I hope you can understand my frustration. A lot of people are concerned and are waiting for this thread to be restored so we are reassured there is no perceived threat. If there's any way I can speed up this progress please let me know - once again I appreciate you are busy, I see you have posted recently so hope this can be resolved soon!

Many thanks!

[cathy8889]

Hi all

any news on when the thread will be reopened please? I know that there are a lot of people using the drops and I think it's important that people have a central place to talk about their experience. Pinguecula are a different kettle of fish when if comes to dry eye and can cause a lot of physical discomfort and mental distress. From my experience searching for individuals who have had surgery to remove there pinguecula is not easy and experiences are often dispersed on various forums and difficult to follow and also difficult to get in touch with people if they posted a year or so ago, this forum is a well established platform for users to compare their experiences and people are going to continue using the drops regardless of whether this thread stays open or not. Getting rid of it could potentially ostracise people using the drops who are already having a difficult time and could really rely on the support of others from this group. It is so important to have a place where users can communicate and share their experiences.

I am not sure of the exact reason why this thread is under review, it would be great if this could be clarified please. If it's because the dry eye zone does not want to be seen to condoning drops that have not gone through clinical trials perhaps a disclaimer could be added to the thread to say that it doesn't
Not endorse the use of drops which have not gone through human trials.

I really appreciate this forum and am so grateful for it's existence, I would like to try the drops when I get my condition under a bit more control but it would be nice to be able to talk to others about it and my feel like I'm doing something wrong. In reality no one knows the full effect of any drop that is out there, restasis is a powerful drop, steroid drops have adverse effects, the dipyridamole drops are in a homeopathic state which I think is important to point out.

Would be great to have the thread up again as people would really like to share their experiences

Thank you xx

[littlemermaid]

This is nothing to do with me because I'm dealing with a different condition, but it looks like what's needed is a coordinator for a multicentre trial - as happened here for this prostate cancer med http://www.eurekalert.org/pub_releas...-nss121808.php - so maybe you guys can help with that. I remember Hankm9 was talking to trial centres in Europe at a similar point held back by cost, but now eg Lifitegrast is going through no problem www.nih.gov/health/clinicaltrials/findingatrial.htm. If there are already databases, as in the article, and willing participants, and medics are organising the trials, is there such a big cost? Am I wrong? What do these guys do?

[Guest]

Hi little mermaid, I think that's a good suggestion, we do need data from clinical trials - it's just about how to source willing participants, medics, and a shared database - which raises the issue of cost and would need backing from MedInSight.

I think a good place to start is to have an official announcement from Rebecca whether this thread can go ahead or not. If not we will have to congregate and discuss somewhere else.

Rebecca - over to you!

[tim20112]

Hi All,

I am getting a little impatient waiting for Rebecca to review this and make a decision...I really don't see what the big deal is =) I think all treatments have a risk element...even the ones with proven safety records. We as adults need to share information, do our own reserach and make an informed decision, while weighing the pros and cons. That said, I created a forum and if people are willing, we can continue our discussion there.

http://dipyridamole.forumotion.com/

Let me know what cha all think.

On a side note, I obtained a couple of bottles of the stuff and am just waiting for my doctors go ahead. I am super excited this seems to be working for many of you =)

[Guest]

Hi Tim,

Thanks for setting this up. I can't seem to post however - even though I've registered? Does it need you to approve me?

[tim20112]

i don't need to approve. i just created a new test account and was able to post a message with no admin approval. it's similar to this forum. you either can respond to a post by clicking "quote" or you can post by typing in the box in the bottom labeled "quick reply". if you still can't post, i'll email you screen shots of what you're suppose to see. you do have to go back into your email account once you create a login and click on a link to get your account up and running.