I love the MSF (MS Foundation) and we work closely together.
Here is a useful question from their "Ask the Doctor forum," which I am active in (I wanted to share it with you all):
Question:
1. I heard something about the use of every other day Copaxone injections working as well as daily injections. Are there any studies on this?
2. Do you know of any studies/recommendations of MonaVie (acai berry) in MS? Any other "natural products/diets known to be effective
3 Lastly, Regarding Fampridine SR, soon to be approved by FDA, how frequently was seizure a side effect? Is it significantly better than when it is compounded by a pharmacy? If you get a seizure related to the med, how long till you could drive again?
Thanks so much for your time...
Answer:
Wow – these are great questions important to the entire MS community.
1. There is growing evidence that suggests that every other day Copaxone (glatiramer acetate) may be just as good as daily GA. See:
http://www.thisisms.com/downloads/Co..._Other_Day.pdf
This has not, however, been proven and bigger trials are planned.
It is important not to jump to changing your injection schedule (despite the clear temptations to – remember Odysseus and the Sirens) for several reasons:
a. Every other day GA may not be as good as daily GA – that is why we conduct large clinical trials.
b. Even if every other day GA is just as good as daily GA for most people, that doesn’t mean that it will be just as good for you.
c. You shouldn’t make this kind of decision alone, and should talk to your neurologist. Remember that your partnership with your neurologist is two-sided – just as you wouldn’t want her to make changes without discussing them with you first, you should afford her the same respect.
2. I am not aware of any clinical trial studying MonaVie in MS. Remember that in MS the immune system is not low, but rather selectively “boost”ed already (your immune system is boosted in that it attacks your white matter covering the nerves (myelin) and the nerves themselves.
Vitamins that seem helpful as add-ons include, Vitamin B12 and Vitamin D. We are planning a study of an Ayurvedic herb, Ashwagandha in the treatment of MS-related fatigue. I think that these complementary (not alternative) medications may be useful in giving your MS tretment an extra boost, but should not replace standard disease modifying agents (especially as they become stronger).
The Swank diet has been proposed as a good MS diet – see: http://en.wikipedia.org/wiki/Swank_diet
I do feel that all of these extra therapies can be useful nd can be a great way of avoiding additional pharmaceuticals for your symptoms but none of them can replace your standard disease modifying agents. See my blog:
http://www.healthcentral.com/multipl...-197780-5.html
Please remember that there may be downsides with these “natural” remedies:
a. They can be expensive (without much “return on investment”).
b. They may place you even more in the “sick role” but forcing you to pop handfuls of these pills (did you see the Montel William video on the Oprah show?).
c. They may be harmful – boosting your immune system in MS is not necessarily a good thing.
3. 4-Aminopyridine does appear to reduce the seizure threshold because it makes nerves work better by improving the conduction of electrical signals, and when you do that in the brain it can cause extra electrical activity and cause a seizure.
The question becomes whether there is going to be a boxed warning on the Fampridine-SR label that says it causes seizure – for more on this, see:
http://www.ft.com/cms/s/2/b7b50454-a...b5df10621.html
In the studies of Fampridine-SR, the chance of seizures was about 1.1%. However, “the seizure-related events over all extension studies with fampridine-SR 10 mg twice daily to date show an incidence of 0.41 per 100 patient-years, which is comparable to a previously reported expected incidence of first seizure in an MS population of 0.35 per 100 patient-years.”
What this means is that there may be no additional risk for seizures for a person with MS taking the drug vs. a person with MS not taking it. Remember that people simply have seizures, whether they have MS or not. There may be a higher chance of having a seizure if you have MS because of lesions in the cortical (grey matter) areas, where seizures come from.
Compounded 4-Aminopyridine does not have to follow the strict FDA guidelines on batch-to-batch similarity and purity, this means that theoretically the compounded medicines you get today may be slightly different from the ones you got last week (there is a similar problem with generic drugs). With that said, I do use the compounded version, but only with specific compounding pharmacies that I trust.
Different states have different driving laws restricting driving after a seizure, and in some states it makes a difference if you had it caused by something or if it just happened on its own. The thought process with that is that if you have an unprovoked seizure then you are probably at an increased risk of having another one, while if your seizure is brought on by something specific and that something is no longer there, then you should not have that same risk of seizures.
The question then becomes: if the Fampridine-SR did not cause the seizure, then the seizure is unprovoked and has to follow (sometimes) stricter driving laws.
Even in states without driving laws for people with seizures, I tell my patients:
“If a small child ran into the street, are you sure that you would be able to avoid them considering that you may have another seizure.” When its put that way (responsibility to others), people usually choose not to drive (usually it is a 6 months to a year of seizure freedom that is needed).
I hope that this has been helpful. For more on these and other topic, visit: www.neurologique.org.
1. There is growing evidence that suggests that every other day Copaxone (glatiramer acetate) may be just as good as daily GA. See:
http://www.thisisms.com/downloads/Co..._Other_Day.pdf
This has not, however, been proven and bigger trials are planned.
It is important not to jump to changing your injection schedule (despite the clear temptations to – remember Odysseus and the Sirens) for several reasons:
a. Every other day GA may not be as good as daily GA – that is why we conduct large clinical trials.
b. Even if every other day GA is just as good as daily GA for most people, that doesn’t mean that it will be just as good for you.
c. You shouldn’t make this kind of decision alone, and should talk to your neurologist. Remember that your partnership with your neurologist is two-sided – just as you wouldn’t want her to make changes without discussing them with you first, you should afford her the same respect.
2. I am not aware of any clinical trial studying MonaVie in MS. Remember that in MS the immune system is not low, but rather selectively “boost”ed already (your immune system is boosted in that it attacks your white matter covering the nerves (myelin) and the nerves themselves.
Vitamins that seem helpful as add-ons include, Vitamin B12 and Vitamin D. We are planning a study of an Ayurvedic herb, Ashwagandha in the treatment of MS-related fatigue. I think that these complementary (not alternative) medications may be useful in giving your MS tretment an extra boost, but should not replace standard disease modifying agents (especially as they become stronger).
The Swank diet has been proposed as a good MS diet – see: http://en.wikipedia.org/wiki/Swank_diet
I do feel that all of these extra therapies can be useful nd can be a great way of avoiding additional pharmaceuticals for your symptoms but none of them can replace your standard disease modifying agents. See my blog:
http://www.healthcentral.com/multipl...-197780-5.html
Please remember that there may be downsides with these “natural” remedies:
a. They can be expensive (without much “return on investment”).
b. They may place you even more in the “sick role” but forcing you to pop handfuls of these pills (did you see the Montel William video on the Oprah show?).
c. They may be harmful – boosting your immune system in MS is not necessarily a good thing.
3. 4-Aminopyridine does appear to reduce the seizure threshold because it makes nerves work better by improving the conduction of electrical signals, and when you do that in the brain it can cause extra electrical activity and cause a seizure.
The question becomes whether there is going to be a boxed warning on the Fampridine-SR label that says it causes seizure – for more on this, see:
http://www.ft.com/cms/s/2/b7b50454-a...b5df10621.html
In the studies of Fampridine-SR, the chance of seizures was about 1.1%. However, “the seizure-related events over all extension studies with fampridine-SR 10 mg twice daily to date show an incidence of 0.41 per 100 patient-years, which is comparable to a previously reported expected incidence of first seizure in an MS population of 0.35 per 100 patient-years.”
What this means is that there may be no additional risk for seizures for a person with MS taking the drug vs. a person with MS not taking it. Remember that people simply have seizures, whether they have MS or not. There may be a higher chance of having a seizure if you have MS because of lesions in the cortical (grey matter) areas, where seizures come from.
Compounded 4-Aminopyridine does not have to follow the strict FDA guidelines on batch-to-batch similarity and purity, this means that theoretically the compounded medicines you get today may be slightly different from the ones you got last week (there is a similar problem with generic drugs). With that said, I do use the compounded version, but only with specific compounding pharmacies that I trust.
Different states have different driving laws restricting driving after a seizure, and in some states it makes a difference if you had it caused by something or if it just happened on its own. The thought process with that is that if you have an unprovoked seizure then you are probably at an increased risk of having another one, while if your seizure is brought on by something specific and that something is no longer there, then you should not have that same risk of seizures.
The question then becomes: if the Fampridine-SR did not cause the seizure, then the seizure is unprovoked and has to follow (sometimes) stricter driving laws.
Even in states without driving laws for people with seizures, I tell my patients:
“If a small child ran into the street, are you sure that you would be able to avoid them considering that you may have another seizure.” When its put that way (responsibility to others), people usually choose not to drive (usually it is a 6 months to a year of seizure freedom that is needed).
I hope that this has been helpful. For more on these and other topic, visit: www.neurologique.org.
Medical Director
Neurologique
info@neurologique.org
www.neurologique.org
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