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Old 11-15-2013, 11:50 PM
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New Seizure Drug Approved - Epidiolex(R)


Epidolex:

http://www.gwpharm.com/GW%20Pharmace...Epidiolex.aspx

Epidiolex is a liquid plant derivative of the cannabis plant that GW Pharmeuceticals has been studying in epilepsy for many years. It's compound is Cannabidiol or CBD, a non-psychoactive cannabinoid extracted and isolated from all the other compounds found in the plant. It has been proven to have beneficial results in seizure control. The FDA has granted Epidiolex an orphan drug designation today to open the door to allow children with Dravet Syndrome first access to this drug. Pediatric FDA trials have been in the works since this last summer as well.

Even though it has been given this introductory blessing, it could still take some time before the FDA can approve Epidiolex for other types of seizure conditions. But soon enough, neurologists will see the safety in prescribing this drug for those with other seizure conditions.

Severe conditions of children with intractable seizures like in Dravet will likely see a marked improvement in their lives with the use of this drug. And, other debilitating seizure conditions may have the potential to be treated as well. Getting Epidiolex prescribed for your condition has the potential to start happening real soon. Our struggles are difficult and perhaps another case of Sudden Unexplained Death in Epilepsy could be avoided. There is going to be plenty of Epidiolex around for those requesting. By asking for it, the demand will be put in place. We can soon enough find out if this is a solution for our own individual conditions.

Being in California, I've found ways to access the crude forms of this drug CBD and have known of its safety for some time now. It took quite some experimentation, but I found out what it was. This un-standardized form of CBD is very unique stuff. It's very therapeutic once you get the correct doses with the smallest amounts of THC that allows for optimum efficacy and no loss of cognitive functioning. At about a minimum 20:1 CBD to THC ratio, the low amounts of THC cannot be felt. Again, it is non-psychoactive at these ratios. And, from all I can tell, it appears to have no other after effects. And btw, I don't smoke pot and haven't done so in over 12 years. Almost seems as harmless as having a glass of green apple/kale drink. (My organic comparison.) There's no cognitive decline that you would associate with smoking pot or eating a brownie. There are actually cognitive upsides. Things seem as though they work a bit quicker.

I use CBD as a "padding", an adjunct to my primary anti-epileptic drug, Zonisimide. And, I also was able to lower my Zonisimide intake considerably as a result. I knew I hit on something when I experienced the first sign of efficacy in the first day. An absence of discomforting sensations that brought on myoclonic events. Only after introducing CBD did they settle down. Especially at night when I was awoken by myoclonic head shakes. No more of those events. With the introduction of CBD, it all subsided. That was my wake up to the benefits.

And, I've only had at most up to 90 milligrams in a day. This is a very small dose in comparison to what is being suggested therapeutically by GW. And 90 milligrams is a large amount in the MM industry when you consider the minimal supply that might be available. You can find all the THC you want, but there is very little of the effective 20:1 and higher CBD. And the cost is a constant reminder of how screwed you really are. This was a huge downside. Assessing the cost and reducing your doses to maximize your days, and the endless task of tracking down the "proper" CBD is no fun. Especially after knowing the benefits. And, not all CBD rich product is created equal. You could not just get the same type each time. This isn't how it should work for those sensitive cases with E.

Therapeutic dosing of Epidiolex starts at about 150 to 300 milligrams in the morning and the same in the evening. A twice a day prescription. And, patients can tolerate up to 1200 milligrams a day. A big difference that I have yet to experience is how much more efficacy is in store with higher doses. I didn't get any more tired or groggy when I increased the amount of CBD in my system. It felt as if my brain was just able to function as well as ever and be alert at an optimum level. Really strange for a liquid extract from a cannabis plant. So, I'm curious to see what will happen when you can start maintaining these higher, more stable therapeutic doses and reduce your primary anti-epileptic drug med. Especially given all the evidence of what they can do for children with Dravet Syndroime.

Obtaining optimum, therapeutic doses of CBD in this MM world is prohibitive. Here's a rough breakdown of what to expect if you do go looking. Currently, the market rate at 300 milligrams a day (minimum therapeutic daily dose) will cost you around $120 a day at .40 cents a milligram. I was able to find a rare source for about .17 cents a milligram. And, I don't even know how long that will last. But I can't afford $50 a day, so I take it in much lower amounts. It's enough to make a difference. Also, sometimes your friendly coop burns you with an unexpected bad ratio, increasing your cost. I don't use that stuff as it will just get you stoned. Good luck getting a refund. This is an area where we need responsible medicine.

I get enough benefits (sound sleep) on a daily basis. But sometimes, the supply is interrupted in big ways. I can only imagine the delight of having an efficient supply of a standardized formula that is going to be the same each time you get it. That is a huge. GW's formulation has to be tested and meet rigid standards with a specific "drug fingerprint" to be met on each batch. Any inconsistencies are tossed out. It has the same rigid standards for continuity as we'd expect from any other anti-epileptic drug.

And, just when you thought it was getting good, it's seems as its only getting better. Another cannabis derivative has also showing some exciting promise in seizure control, with even more efficacy than CBD. That one is Cannabidivarin, or CBDV. GW Pharmaceuticals has demonstrated that it has the potential for even greater seizure control with lower dosages than their CBD drug Epidiolex requires. It's next up and I expect to see very exciting news with CBDV and expect it may get here sooner now that Epidiolex is available.

Many of us will get a chance to have access to these unique drugs soon and have a chance to overcome seizures - - and without all the crappy side effects. Many thanks to GW Pharmaceuticals and especially the research team headed by Dr. Ben Whalley at The University of Reading. They are great people who really care about delivering a great solution to the problems many of us suffer from. They are bringing us hope for E with plant strong medicine coming our way.

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  #2  
Old 11-16-2013, 05:26 AM
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This will probably just be another one that wouldn't help me anyway.
I never get my hopes up about new drugs.
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Old 11-16-2013, 10:22 AM
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yeah, my Son already using CBD with great results and I would 'like to' think this will open up doors for many who cannot obtain locally. not sure what pharma producing will change either, got a patent and then theres the GMO concern

Cannabidiol (CBD), a major phytocannabinoid constituent of cannabis.......

Last edited by Chaz1; 11-16-2013 at 10:31 AM.
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Old 11-16-2013, 10:45 AM
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Now that marijuana is legal here in Colorado, they are finding ways to treat children with Dravet Syndrome using marijuana oil that is low in THC and high in cannabidiol.

http://gazette.com/families-of-child...rticle/1507895

And the program Dr. Sanjay Gupta talked about "WEED" featured a Dravet Syndrome child here in Colorado.
http://www.huffingtonpost.com/2013/1...n_4137260.html
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Old 11-16-2013, 01:04 PM
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Originally Posted by Chaz1 View Post:
yeah, my Son already using CBD with great results and I would 'like to' think this will open up doors for many who cannot obtain locally. not sure what pharma producing will change either, got a patent and then theres the GMO concern
This is great news for your son Chaz1. You can see the results and understand the benefits as well as had some time to assess any of the immediate risks you might have had concern with. Not all with this situation are willing to go to the lengths you have. It still holds quite a stigma. Very happy you have had this good fortune.

The GMO issue is a big one. The fight was just lost again in Washington as the "Giants" spent about double per capita of what they did in California to have their sick way. But the battle isn't over. I believe the European Union is strong in keeping out GMO's. The UK is mostly a GMO-free zone. GW grows their plants indoors and each plant is on a moving conveyor so they all see the same light. They go to some unique lengths to optimize the growing using its aggressive nature already intact in its DNA. I don't believe that a GMO is ever going to be necessary. Doesn't appear like they need to have the likes of Monsanto or Syngenta assisting them. There are so many rigid standards. Also, there is no GMO cannabis developed that I know of. And, the folks behind this do have some ethical bones that you may not find in some other pharmaceutical companies.

Even so, if for some unfortunate reason this did happen, you would have to weigh the risk-benefit. Something we have no control over with a regular anti-epileptic drug. I've had my MM supplies tested and I don't believe there is a test for GMO strains. Only a test for purity. And many growers don't have the same ethical understanding. They think using Roundup Ready is just something you do when bugs are around. They just test for potency, not purity. It's a "Wild West" out there when opportunists who are starting to hear CBD and the potential for profits.

As far as the patent. The United States owns that. That has kept many out of the game. Too much skin too lose. But, GW Pharmaceuticals has been given Orphan Status and will be the only company allowed to produce and sell a CBD product in the US for seven years. It has not affected the MM world. After what I've been through, I am willing to see what GW's product will be like.

Don't take my word. You can contact the company and direct these concerns to them.

Originally Posted by Cint View Post:
Now that marijuana is legal here in Colorado, they are finding ways to treat children with Dravet Syndrome using marijuana oil that is low in THC and high in cannabidiol.

http://gazette.com/families-of-child...rticle/1507895

And the program Dr. Sanjay Gupta talked about "WEED" featured a Dravet Syndrome child here in Colorado.
http://www.huffingtonpost.com/2013/1...n_4137260.html
The Stanley Brothers and Realm of Care are doing remarkable work in Colorado. The stories are so touching. It's helped put a face on CBD. They are the closest model to doing the right thing in this MM patient model. However, they are not able to serve us all.

I'm in California, the pioneer MM state, and still have the toughest time getting CBD strains as high as Charlotte's Web, the strain you see in the documentary. And, when you do find the right strains, the cost is therapeutically prohibitive. It won't be a fair price unless I grow it myself. That is very difficult at the moment. And think of how many others are in a situation such as this? And, what about all of those who live in a state where MM laws are non-existent? I wish we had more models like Realm of Care. It just doesn't exist at the moment.


Originally Posted by Belinda5000 View Post:
This will probably just be another one that wouldn't help me anyway.
I never get my hopes up about new drugs.
I was on Dilantin and lost hope until Depakote came along. That drug gave me 100% efficacy. After 30 years, it started to tax my liver and I experienced lots of stomach pains. I had to go off of it. I know how you feel. This is what brought back those same feelings after getting on Zonisimide as it wasn't effective as I had been accustomed to. But I searched and experimented and found this CBD. There is something unique about this cannabinoid. And, it made a difference. Also, another stronger one is coming. It is CBDV, and, if CBD does not do the job, maybe CBDV will have the stronger anti-convulsion properties you need. The good news about CBD and CBDV is there are no side effects to speak of and, as well, there have been no discoveries of any issues with these drugs affecting the liver, kidneys or other organs.

I never get like to get my hopes up for the same reasons. But I like hanging on to them. I will hang on to them for you as well. Hoping for better days Belinda.
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  #6  
Old 11-17-2013, 11:34 AM
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Thanks frshbeat - super input!

I researched CBD oil big time before recommending and in turn sourcing for my Son, I am totally comfortable with it, totally and happy to be slandered to high heaven and some. Just so glad he is open, fair play to him.

We have super high CBD to THC ratio plus one with a higher THC ratio, the latter he takes only when he feels he needs it. High CBD to THC he takes every night before bed… in NLD MMJ is not taboo, does not mean most Dutch use, in fact the opposite, but my Son has said MMJ is one of the things that truly relaxed him and took anxiety away, so a no brainer for us to say, we are onto to something good, lets research it more, and this is how we found CBD oil.

Being on this E med journey beside my Son has been enough to keep our safe alternative search accelerator to the floor. if the med really controlled his seizures then maybe we would have seen things different, was not the case, always seems to be a honeymoon period, though yours was long I might add but fixing one aliment only to destroy another valuable organ just don’t seem right. Then it’s up with the meds, up, up and away or add in some benzo….my Son won’t have it.

Yes I know it’s a US patent…Gotta love the net for its info/opinions…. A read u may be interested in.

http://www.mrnice.nl/forum/3-daily-n...onder-why.html

Anyway, I am delighted to see CBD coming to the masses…..heavens above, if this can replace harsh E meds for some, then there is a potential miracle at hand, of course nothing works for all, but HOPE, there is HOPE for a SAFE ALTERNATIVE, brought to us by the Good Lord, Mother nature.. for me its no different to chopping up a Nettle…for which there are many good uses 

PS, will be talking Epidiolex on our next visit to his neurologist, which is soon. cant wait to see what he has to say about it, if anything....
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Old 02-28-2014, 12:54 PM
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It is true the CBD oil is pretty damn expensive. I know one company Cibolex (simple partial?) that changes $40 for a grand total of 100 mg, and $160 for a grand total of 500 mg in one bottle. The only reason they get away with it is because MJ is so politically controversial. I hope we can find a plant or herb that has CBD. At least the Epidolex would be a pharmaceutical covered by insurance since it's not "tainted" with the association with MJ. Thing is, since it's artificial, it may not be as beneficial as good old MJ. My MD is more open-minded than very conservative neurologists who are collaborating with the big drug companies. By the way, what does this Epidiolex cost?
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