New myopia treatment now available (with some work!)
A new drug has just passed phase II trials in Europe. It is called 7-methylxanthine (7-MX) and this has been an underground success in the field of myopia. It is a breakdown product of caffeine and works on adenosine receptors. The results of the phase II trial are outstanding to be honest. Please see here:
In addition, the mode of action of this drug is known. It thickens and strengthens the sclera wall by actions on collagen. There are many animal studies detailing this and one was recently presented at the ARVO meeting in Florida. Because of the mode of action, I believe it may help reduce staphyloma development in adults and the lead author of the group agress with me on this and suggested for me to give it a try following some correspondence with him. It is completely unknown in this regard though so I am not for one second saying evryone should go out and get it. The drug has been approved "on a limited basis" in Denmark and I will be getting a prescription for it next week. There are ZERO side effects (see article) and I have been told the cost of the medication is a dollar a day. I think this is a real breakthrough. If you have children with myopia, they need to be on this NOW!!!
If you would like more information regarding the drug and how and where to get it, let me know. I have no idea why this has not gotten more attention in the US. The group is publishing in obscure journals to be honest. This is a common tactic when a drug really does work and is done because there is serious financial gains to be made here!
VERY interesting!!!! Here's a dumb question from a non-science guy: Might a caffeine breakdown product have the same side effects on the body as caffeine? Currently I can consume caffeine in only very small quantities because otherwise I get widespread muscle pains and aches. I think the answer is that a breakdown product is completely different from caffeine itself, but who knows.
MelFoss: I obviously cannot answer that question but surely with that kind of myopia, you would want to try anything you can. This looks the best to me so far and with no side effects and low cost, it might be worth a try. Please read the study, it is not difficult to understand for non-science folk and will help you make an informed decision. Please remember that the drug is currently not available in the US, but if you wait for FDA approval here it could be another 5-10 years so you have to do all you can to look after yourself and your family. I spend a lot of my spare time on this subject, trying to find answers for all of us. I would say one of my main goals apart from saving my own eyes is to prevent one more young adult from having to live with the truly horrible feeling that you could lose your functional vision and not knowing when or if it will happen. I wouldn't wish it on my worst enemy.
nickppatel: That is not a stupid question at all and I have wondered about it myself but haven't had any time to check it out. My instinct is that you would need to consume an awful lot of caffeine to get the same effect. The suggested dose of this particular compound is 800mg/day so you can imagine how much coffee you would need to consume to get near that!
Once I have gone through the process of getting this drug, I will let you all know how you can go about getting it. I hope to start the process early next week. I will get it.
Thanks dukey - but I think you misunderstood me (or I misunderstood your answer). My problem's that when I ingest caffeine, I have negative reactions to it (muscle pains). I'm very interested in this new compound, but am worried it might have the same negative effects as when I ingest caffeine. I don't know if you'd have an inkling as to whether the same side effects would be experienced, but I thought I'd ask, and any insight is appreciated, as always.
I've read somewhere that caffeine has been touted as a cure for many diseases like cancer and asthma. Caffeine is also an ingredient in some painkillers available OTC. We know the benefits of caffeine. I drink coffee every morning, and it keeps me wide awake after that!
Bravo, dukey, and thank you for posting this information for others. They say that heaven helps those who help themselves. I was also successful at finding treatment via online correspondence for a condition (retinally-induced aniseikonia) which the local doctors found "untreatable." How did we cope before the Internet?
As you can see, 7-MX is essentially what makes up caffeine, which is formerly known as 1,3,7-trimethylxanthine (I didn't actually know this!). Whether you will suffer some of the same side effects as caffeine per se nick is an open question. My feeling is no, but you would need to take the drug to see what happens. Note that there were NO side effects reported in the phase II trial. I think this comes down to the fact that this is essentially a natural compound.
JodieJ: I have no idea how we coped.
As an additional question to everyone, I want to ask whether anyone believes that the US is hampering attempts to cure or limit myopia due to the massive implications to the optical industry?
At first glance, I would say yes.... ophthalmologists stand to profit from myopia as well as optometrists (just think LASIK in addition to dispensing contact lenses and glasses).
There is a definite perception among ophthalmologists that myopia is a natural variation except for us unfortunate few with pathological myopia (we just get the pat on the head). If it is perceived as a natural variation, then why try to cure/prevent it at the molecular level. Many insurance companies do not recognize it as a disease and, therefore, do not cover related expenses (e.g., cycloplegic refraction)
I would also argue that there is a lack of advocacy, and that that remains an obstacle as to why myopia is perceived as benign and not a disease. I have contacted national organzations (e.g., Foundation for Fighting Blindness) - none have ever heard of degenerative/pathological myopia and do not fund any related research efforts.
If I wasn't already consumed with the needs of three small children (one with cystic fibrosis), I would love to organize advocacy for pathological/degenerative myopia. Advocacy can drive funding.
You are right, Dukey, it's the lack of basic science that is appalling.
I'm not sure. While the world of ophthalmology might stand to gain by suppressing this type of research, the pharmaceutical industry (a much larger titan IMO) stands to gain by promoting it. I think the pharma folks did not realize this because who would have thought that a major treatment for myopia would be in pill form? You'd think it would be some type of surgery. So while 7-mx looks promising, it still probably isn't getting enough exposure to Big Pharma to have them take up the cause.
I agree, whoever comes up with a solution to myopia (be it pharmacological or surgical) stands to make an immense amount of money. I don't believe the anyone would have the power, or the desire, to stop that from coming to light. Anyway I tend to find studies that are only published in obscure journals are there because they are not strong, reliable studies or because the results are just not that interesting. If there were a cure for myopia I can't see it being the latter to be honest. I haven't read the papers myself so can't really comment on the quality of their evidence but if they are truly reporting zero side effects I'd be suspicious, I don't know of a single drug without side effects. Still it'll be interesting to see what comes of it all and I have my fingers crossed!
The lack of side effects don't really make me suspicious. If this indeed is similar to caffeine, I would believe that there were no side effects. The study was small (68 people). I can imagine that there are millions of people who consume moderate amounts of caffeine daily without any negative side effects. Caffeine is one of the "safest drugs" out there - so I am not surprised that a group of 68 people experienced no problems. Just MO.
Yes this is a phase II, typically much smaller and more focused on safety and efficacy. Phase III will really be the acid test for this drug, and others like it. Zero side effects is not surprising for this compound; it is essentially a natural remedy and not a pharma synthesised compound. The fact that it was a small study, the results are perhaps even more astounding. The animal work that was done with this drug is even more impressive and only use groups of 6 animals to detect a noticable biochemical effect of large significance.
The journal that this paper is published in is an open access journal, which typically have very low impact factors, if they have one at all. My guess is that this was a deliberate ploy by these guys to reduce the exposure of this article significantly. This is done to prevent competetion and to ensure that maximum profits are gained by the quthors. It doesn't help the patients, but it's just the way it is. The earlier animal work was published in the British Journal of Opthlamology, which is one of the highest ranking journals in the category!
Just as a real world example of this, I reviewed a paper last week in the diabetes field that was published in a very, very high ranking journal. It described a new compound with dramatic effects, but everyone in the field knows that the company behind it is hiding something (i.e. side effects, biochemistry etc) and we know they are dropping development of the drug in question. There is no way in this world that they would have published the same paper if they were to market it and ultimately sell the drug. It paves the way for the competition to to get in on the act. It makes no sense on business level.
Well no doctor here will write me a bloody script for it as it is not FDA approved, despite all of them stating that I should take it. Typical really but I wouldn't expect a doc to risk his/her license over it to be honest. I am travelling to London for xmas, my home town, and have an appointment at Moorefields and so will bring it up then. I am not confident at this point though.
Well after much effort, I will be getting a prescription written by the lead scientist on this work in Europe and will then get the pills shipped to me here in the USA. The cost is $1/day bascially, which is fortunate. Will confirm back when I have received them and started taking them.
OK so I am now awaiting delivery of my drug after everything else was finalised. I was asked to get an axial length measurement done (surprisingly I hadn't had one) so that we can measure it as I go through the treatment. My length was not actually that bad (28.3mm) so it cheered me up a little bit as I was expecting 30mm or above. I am also now taking fish oil and AREDS to try and combat this thing or at least reduce it's progression.
I still do not have the pills in hand yet so I wont view this as a success until then. When I do get them, I will write a summary or something to explain how I did it. Technically, it is illegal to import non-FDA approved drugs into the USA, but there are some loopholes which I may need to exploit if I get trouble from the CBP. Fingers crossed though. Will post back ASAP.
Thanks berrywoo. I wish it was a "cure" but I'm hoping it may prevent the very serious degeneration which may occur in the coming years. If I had "simple" myopia, I would not be doing this that is for sure. One can dream!
Hey yeh so I am now taking the drug (800 mg/day). I am also now taking AREDS with Lutein (2 x day) and fish oil (3 x day). Obviously there are no immediate changes with the drug. We are trying this mainly to try and reduce any future elongation associated with pathological myopia so we dont expect to see any improvement per se, but we really do not know what to expect. I have not noticed any side effects of anything that I am taking, including the 7-MX. I would say that out of everything, the fish oil seems to be having the most notable effects on my vision and lots of other things too. This could be the infamous palcebo effect though so don't take my word for it. We will be monitoring my axial lengths every year.
If anybody is interested in this drug, please contact me via private message as I am not sure it is appropriate for me to be posting instructions on how to obtain a non-FDA approved drug on a US website!!!!
Wow. It gives me so much hope to hear of this new drug. I have suffered greatly from high myopia (posterior vitreous detachments caused traction tears in my retina, now have scleral buckles and IOLs in both eyes). Doctor has suggested I take AREDS and Fish Oil. Im in the U.S. My night vision is terrible and currently am seeing 20/40. I would like to applaud you for your tenacity. I will inquire via PM about 7-methylxanthine.
I'm excited to come to this site and learned new treatment you are taking. I'm suffering from this hell disease for a long time. I wonder if it's effective for an adult. Can you tell us if it works for you after having taken it for one year now? thanks
I have recently been experiencing the ravages of pathological myopia. I would really like to know what your experience has been using this drug. I will probably send you a PM to get all the details, but I would just like to know if the progression of your myopia has slowed down.
Has anyone other than Dukey been able to obtain this drug to help strengthen the collagen in the sclera to inhibit future eyeball expansion/lengthening? Even if not approved in US yet I would really like to know more.
I'm going to try PMing Dukey through MedHelp although I don't know if the message will go through. Haven't seen recent posts from Dukey but would so love to know how the drug might be working - and also how the performance of the Posterior Pole Buckles have been over the past 2-4 years.
I was just diagnosed (finally!) with Degenerative Myopia w/ axial length in both eyes over 30mm; I am devastated. Surprisingly, aside from stable severe myopia, I haven't had many symptoms yet. What sent me to multiple retinal specialists was a recent distortion/blurring episode in my LE diagnosed as a Fuch's Spot. The first doctor said 'Your retina doesn't look that bad, wait 2 years and come back unless things change first.' No axial length measurement or fluorescein angiography. Luckily the second doctor was more thorough and already suspected what might be happening due to my history.
I am already trying to learn about the PPBuckle option as well as any chemical/supplement/medication options to help slow down progression of the DM in the future.
My refractive error has been stable for over 10 years at -14.0D, but w/ an axial length of over 30mm it sounds like the writing is on the wall for me. If anyone has thoughts about the meds or the PPB, please speak up. Thanks!
I also have degenerative myopia and an axial length of over 30!! I even had a CNV (choroidal neovascularization) in the left eye in January 2012, had 2 injections of Avastin which definitely did what it was supposed to, but I was left with distorted vision in that eye.
In any case, at the beginning of 2012 I e-mailed an ophthalmologist in Copenhagen named Klaus Trier, mentioned by Dukey, who has done research on myopic children to see if 7-MX would slow down the progression. He actually e-mailed me back saying that it was too early to know if it worked in adults and that he should have more information in about a year. So, at the beginning of this year, I e-mailed him again, but he never wrote back! I am so frustrated.
Anyhow, if you ever find anything out about the use of this drug in adults, I would love to know!
Just wanted to let you know I have seen Dr. Brian Ward and asked him about the 7-MX but he said he does not know of any patients who are on it. I asked him about Dukey (his patient from the University of Texas, whose name I do not know) and Dr. Ward said he did not know if Dukey had obtained the 7-MX or what results he was getting (if any). I also PM'd Dukey through MedHelp but never received a reply. Hopefully Dukey's sight is so good he's off living life rather than spending time on the Eye Care forum. :-)
I've done lots of Internet trolling but cannot find ANY source of 7-MX for patients in the US. I can only find industrial suppliers of powdered 7-MX, which I doubt is the same as medical grade material. I'm not planning to consume industrial chemicals from a drum.
BTW I am scheduled for posterior pole buckle surgery early next year in the symptomatic eye, and I will report back afterward. If it goes well, I'll likely try it in the other eye as well.
I'm already very, very nervous, but on balance if I do lose my vision later in life, I'd like to be able to look back and feel as though I did everything I could to preserve central vision as long as possible. Of course, if I end up with a disease or rejection from the donor sclera material, it will have been a poor choice, but there are no guarantees either way I guess.
I really appreciate your updates.I too have DM...axial lengths 29mm right and 30mm left.I had 'funny' vision and went to see an opthomologist this time last year.I was dx with myopic foveaschisis in my left eye.After two vitrectomies and a cataract op in that eye, I still see 'funny' ...meaning my vision is subnormal.If its any consolation...I think you're on the right path,having the buckling with Dr Ward.Have you looked at Delphi forums? A couple of folks there have had the pole buckling done.Good Luck flossy93 and do update us
Thanks for the input, Agi64. I'm really sorry to hear about your myopic foveoschisis - that's a really dramatic development that's very hard to treat surgically. In case you are interested, I came across a recent article from mid-this year concerning surgical approaches to treating this entity:
I was interested in the recommendations of possibly including a buckle to help resolve the schisis, although of course it would depend on whether the locations of the retinal layer separation/schisis was in a section of the eyeball that COULD be 'buckled.' And on what other treatments have preceded any such further procedures, of course.
I'm still having distortion and blurring after 2+ months in the eye with the slightly steeper macular staphyloma, but even Dr Ward was unable to see a bleed or fluid leak on a macular OCT causing the problem. I'm praying it isn't a hidden lacquer crack or something worse. It will be interesting to see if the PPB surgery results in any difference in that eye's visual acuity, once the surgical trauma has resolved. I think Dukey mentioned that one of his eyes had a change in acuity (a bit better) post-surgery, although I am not expecting that in my case.
I'll check the Delphi forums too - thx for the tip! Good luck w/ your foveoschisis - I hope you and your doctor can find an additional treatment that might improve your vision from its subnormal state.
PS we were rooting for NZ to take the Cup! You all are our heroes - great competitors and gracious in defeat. Go Team NZ!
I would suggest looking into low level laser therapy (LLLT). There are people experimenting with it for multiple uses (memory, vision). LLLT energizes mitochondria through complex IV of the electron transport chain. One user reports halting his vision degeneration due to Leber's Hereditory Optic Neuropathy, which is a mitochondrial disease. More info can be found here: http://www.********.org/forum/topic/63228-lostfalcos-extensive-nootropic-experiments/page__st__1800
I have been diagnosed also with foveoschisis and I have been postponing the operation, had 3 opinions, one proposing an immediate operation the other 2 wait and have the operation only if things get unbearable as the vision in my other eye is quite poor and cannot risk my "good eye" having any complications.
What do you mena funny vision? I see pixelated almost everything, smudged fonts in computer and something like the wavy things you see in the asphalt when it is too hot -like evaporating water.I see 6/9 currently in my last visit, improved from 6/12 in the previous (although my feeling is that things got worse)
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