Bird Poison okay...but we need to be cautious with CCSVI???

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Bird Poison okay...but we need to be cautious with CCSVI???

Postby magoo » Fri Feb 19, 2010 4:37 pm

I'm just dumbfounded. How can treatments like these with such bad side effects be big news and CCSVI not??? Oh I forgot...money.
This drug just plain scares me, it's bird poison. It only helps 35% to 42% walk faster and longer, but does nothing to change your disease course. I don't think I would personally take that risk. What happens long term???

MS Drug Ampyra Gets FDA Nod
Ampyra Improves Walking in Many Multiple Sclerosis Patients
By Daniel J. DeNoon
WebMD Health NewsReviewed by Louise Chang, MDJan. 22, 2010 - The FDA has approved Ampyra (dalfampridine), which improves walking ability in adults with multiple sclerosis (MS).

About three-fourths of MS patients have trouble walking, and 70% of those with walking problems say this is the most challenging aspect of their disease.

Ampyra is taken with other MS drugs and does not keep MS from getting worse, says Andrew D. Goodman, MD, director of the MS center at the University of Rochester, N.Y. Goodman led some of the clinical trials that led to the drug's approval.

"A large segment of people with MS have difficulty walking, and we have found that it helps some patients -- 35% in one study and 42% in another -- to consistently walk faster," Goodman tells WebMD. "Among those who do walk faster, they improve about 25% from baseline. These patients said they could walk longer distances, be on their feet longer, climb stairs better, and better perform other walking functions."

Ampyra does not change the course of MS disease, but enhances nerve function.

"There is no indication this type of treatment slows the progressive nature of the disease process," Goodman says. "But there is every indication that at whatever level of function an MS patient may have, there may still be room for improvement with this type of treatment."

The drug is by no means risk-free. Ampryra is a new formulation of a drug called fampridine, which was originally used as a bird poison.

Some 20 years ago, test tube studies suggested that fampridine could improve nerve conduction. Since then, some neurologists -- Goodman is not one of them -- have ordered the drug from compounding pharmacies for their MS patients.

At doses higher than the approved dose -- 10 milligrams twice daily -- Ampyra can cause seizures. The drug cannot be used by MS patients with a history of seizure, or by those with moderate-to-severe kidney disease. The drug cannot be taken with other forms of fampridine.

Side effects seen in clinical trials include urinary tract infection, insomnia, dizziness, headache, nausea, back pain, loss of muscle strength, balance disorder, multiple sclerosis relapse, tingling or numbness in the extremities, nose or throat inflammation, constipation, upset stomach, and throat pain.

Ampyra is made by Acorda Therapeutics of Hawthorne, N.Y. Acorda says the drug should be available in the U.S. in March. It will be sold through a network of specialty pharmacies coordinated by Ampyra Support Services at 888-881-1918 888-881-1918.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 550
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Advertisement

Postby ozarkcanoer » Fri Feb 19, 2010 5:43 pm

magoo,

The side effects of this drug describe almost perfectly the way I feel with MS everyday. Why would I ever want to take a drug that would make it worse ?

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby magoo » Fri Feb 19, 2010 6:14 pm

So true. The benefits of CCSVI treatment beat the pants off of any of these new drugs, yet it is still very difficult to find treatment or have most neuros give it the time of day. If they want us to get better why not try CCSVI for your patients? The risks of angioplasty are minor and the risks of stent surgery seem less dangerous than the new pills.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 550
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby Maestro » Fri Feb 19, 2010 8:27 pm

Hi,
here is my experience with the bird poison :twisted: .
I am taking a prescription, generic chemical compound 4AP from a compounding pharmacy for the last three years (in Canada). That is a bird poison and so far it is the only thing that works, keeps me on my feet. I know until I take it in the morning I can hardly move and during the day I can fill if I didn’t take it. It is the only “drug” I am taking (3 times 9.9mg /day).
I haven’t try yet inclined bed and next is naturally the liberation treatment… I don’t have any side effects. Don’t know what they did with the approved formula of the “new” drug.
Regards,
V.
User avatar
Maestro
Family Member
 
Posts: 25
Joined: Tue Jan 26, 2010 4:00 pm
Location: BC, Canada

National MS Society

Postby Squeakycat » Fri Feb 19, 2010 9:09 pm

Rhonda,

Sorry to see you don't think bird poison is for you.

Just received an email from the National MS Society enthusiastically promoting Ampyra without any of the sort of cautionary statements that they have applied to CCSVI.

I wonder what percentage of their research funding will be going to CCSVI?
User avatar
Squeakycat
Family Elder
 
Posts: 375
Joined: Fri Dec 04, 2009 4:00 pm
Location: Yehud, Israel

Postby bluesky63 » Sat Feb 20, 2010 6:10 am

I absolutely agree!!! Incidentally, this is a Biogen drug.

It also lowers your seizure threshold, so people who are at risk for seizures shouldn't go near it.

I got that same newsletter from the MS Society and vented about it on a different thread, "conflicts of interest." I won't repeat it here but if you scroll down on page two you'll see what I said.

http://www.thisisms.com/ftopic-10274-15.html

It really makes me ill.

Thanks for keeping this in everyone's awareness! We're the ones who are the actual guinea pigs. (Where's the guinea pig graphic?) :-)
User avatar
bluesky63
Family Elder
 
Posts: 440
Joined: Mon Apr 18, 2005 3:00 pm

Postby TFau » Sat Feb 20, 2010 7:20 am

I thought that it was an Acorda drug??

Actually, I tried to get my husband on the compounded 4-AP in advance of the fampridine SR release - I thought it would do him some good since his main disability has to do with walking. His neuro somehow talked him out of it. Apparently, the seizure that happened was linked to a mistake by a compounding pharmacy where the % of active in the formulation was much too high.
User avatar
TFau
Family Elder
 
Posts: 222
Joined: Tue Nov 24, 2009 4:00 pm

Postby Jugular » Sat Feb 20, 2010 7:44 am

Water, when taken in sufficient quantities, can be poisonous to the system too.

This is the first drug of its kind aimed at improving the function of damaged nerves. It was developed by Acorda. Acorda sold the marketing rights to it outside U.S. to Biogen. Acorda is a small drug company whose aim is to develop drug therapies aimed at restoring nerve function. They are presently conducting pre-clinical trials of drugs that will help damaged nerves regenerate myelin.

This is as exciting to me as CCSVI, as it represents a one-two punch to a cure. So when rejecting drug companies as anti-CCSVI co-conspirators, please be careful not to throw the baby out with the bath water.
User avatar
Jugular
Family Elder
 
Posts: 375
Joined: Mon Dec 21, 2009 4:00 pm

Postby magoo » Sat Feb 20, 2010 7:50 am

Maestro, I am all for personal choice, so if you are happy with it that's good. I hope you have continued success. :D
I thought it was worth pointing out the enormous inequity in "promotion" of the new drugs as opposed to CCSVI treatment all over the web.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 550
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Canaries?

Postby Squeakycat » Sat Feb 20, 2010 8:00 am

@Bluesky63, perhaps canaries would be a more appropriate analogy than guinea pigs for an extended release bird poison?

@Jugular. To me the issue is not whether pharmaceutical companies are evil as much as the sharp contrast coming out of the MS societies with their dire warnings of caution when it comes to CCSVI while openly touting pharmaceuticals as if FDA approval somehow eliminates any nasty side effects.

Image
User avatar
Squeakycat
Family Elder
 
Posts: 375
Joined: Fri Dec 04, 2009 4:00 pm
Location: Yehud, Israel

Postby bluesky63 » Sat Feb 20, 2010 8:05 am

Right -- that's the take-away message -- we all have awful choices to make. I don't want to ever judge someone's choice because when we are facing devastating disability we have very little choice.

But when the neuros and the NMSS newsletters tell us that all these heavy-duty meds are so positive and gloss over the truly serious effects on the people who take them daily -- even though they can also help -- and then ignore or take an overly critical, paternalistic tone with CCSVI -- the inconsistency is glaring.

It's not just CCSVI, you know. I've had doctors encourage me to try meds that have a high rate of malignancy as a side effect -- and then ask me if I'm sure something like a well-researched vitamin I'm taking is OK.
User avatar
bluesky63
Family Elder
 
Posts: 440
Joined: Mon Apr 18, 2005 3:00 pm

Postby eric593 » Sat Feb 20, 2010 2:15 pm

The difference is that this drug has the proper scientific studies demonstrating its efficacy (and risks).

CCSVI and Liberation treatment don't yet.

That's a big difference.

When Liberation tx has scientific evidence behind it, I'm sure the NMSS will endorse it too.

Ampyra is a symptomatic tx too, it's not meant to change the course of disease progression. You're mixing apples with oranges by criticizing it for this. We don't criticize baclofen for not stabilizing MS when it "only" helps with spasticity.

edited to add: and it excites neurons which is why it works as a bird poison. For us, that just happens to help with neuro-conduction to our limbs, something we need. I don't seem any conflict that in birds, neuro-excitatory actions result in death when for us, it helps to send the electrical impulses that we NEED.
User avatar
eric593
Family Elder
 
Posts: 473
Joined: Sun Feb 17, 2008 4:00 pm

Postby patientx » Sun Feb 21, 2010 8:16 pm

Eric:

Very well put.

One great irony with all this grumbling over the evil pharmaceutical companies is that many who have undergone CCSVI treatment, including Dr. Zamboni's wife, continue to use those awful DMDs.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby magoo » Sun Feb 21, 2010 8:32 pm

I really regret posting this thread. :cry:
I did not mean to offend anyone.
I was trying to vent a little anger about the discrepancy between the way the press announces new drugs and the way they describe CCSVI. There may be a million arguments as to why this is, but I felt it was unfair.
Sorry :oops:
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 550
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby L » Sun Feb 21, 2010 10:22 pm

Two posts from the Royal London Hospital blog:

...Given at doses greater than the recommended 10 mg twice a day, dalfampridine can cause seizures...



Aminopyridines, a family of compounds to which Fampridine belongs, works by lowering the requirements for axons (the electrical cabling of nerves) by blocking a specific group of proteins on their surface called voltage-gated potassium channels. This makes it more likely for an electrical impulse or action potential to be transmitted across a demyelinated segment of an axon. Although this will improve motor function the effect on sensory and other pathways may make some problems worse, for example exacerbation of pain and increase in the frequency and severity of MS-related positive symptoms (pins & needles, muscle spasms and seizures).
Aminopyridines will almost certainly increase the energy requirements of damaged, vulnerable, demyelinated axons as they will require more energy for repolarization the process by which they get ready to transmit another electrical signal. There is now good evidence that increasing the energy requirements of axons may result in further axonal injury and loss. Essentially this is the theory underlying the use of sodium channel blockers, such as phenytoin or lamotrigine, as neuroprotective compounds in MS; by reducing transmission you reduce the energy requirements and hence protect vulnerable axons.
For these reasons I am wary about the long-term use of Fampridine in MS-related motor fatigue. I am worried that Fampridine may speed up the rate of disability progression. I stand to be proved incorrect on this; we will only find this out by doing clinical trials and following up patients with progressive MS on these medications for long periods of time using standardised methods.
I have posted Hugh Bostock’s videos, from Queen Square, on conduction in a normal nerve and a demyelinated nerve, on YouTube, to illustrate how slow and difficult it is to transmit an electrical impulse down a demyelinated nerve. When you watch the videos please try and imagine how much more effort/energy is required for conduction in demyelinated axons; aminopyridines are the chemical whips that keeps these axons firing.


Doesn't sound too appealling..
User avatar
L
Family Elder
 
Posts: 946
Joined: Sat Oct 20, 2007 3:00 pm
Location: The United Kingdom

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users