Epidolex:
http://www.gwpharm.com/GW Pharmaceu...gram in Childhood Epilepsy for 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 SUDEP 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 AED, 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 AED 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 AED.
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.
http://www.gwpharm.com/GW Pharmaceu...gram in Childhood Epilepsy for 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 SUDEP 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 AED, 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 AED 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 AED.
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.
