Wednesday, April 16, 2008

Oral Drug, FTY720, Reduces Disease Activity in Multiple Sclerosis

There could be no better news, in my opinion! I've waited a long time for some official update on this, and we finally have something in writing from the American Academy of Neurology:

CHICAGO – A drug that can be taken orally reduces the number of attacks people with multiple sclerosis (MS) have, according to research that will be presented at the American Academy of Neurology 60th Anniversary Annual Meeting in Chicago, April 12–19, 2008.

“All of the current treatments for MS must be injected, so having a pill you can swallow with a glass of water would be a welcome improvement for many people,” said study author Giancarlo Comi, MD, of Vita-Salute San Raffaele University in Milan, Italy.

The results reported are from an extension of a six-month study with 281 people with relapsing MS, two-thirds of whom took the drug FTY720 (fingolimod) and one-third of whom took a placebo. After six months, those taking FTY720 had more than 50 percent fewer relapses, or attacks, than those who took the placebo. At that point, all of the participants could enter an ongoing extension of the study where all would receive the drug.

A total of 173 people have finished three-years of the study. Continuous use of the drug led to sustained low relapses, with more than 67 percent of the participants remaining free of relapses after three years. In addition, the inflammatory activity associated with MS, as assessed by MRI scans, remained low, with 89 percent of patients free of disease activity and 75 percent of patients free of new or newly enlarged lesions.

“The first line treatments for MS, beta interferon and glatiramer acetate, reduce the relapse rate by only about 30 percent, so this is a significant development for people with MS,” Comi said.

The most frequently reported side effects of the drug were headache, fatigue, flu, and cold symptoms.

FTY720 is an immune-modulating drug that binds to a receptor site on immune cells, sequestering them in the lymph nodes. As a result, FTY720 reduces their ability to cause damage associated with the symptoms experienced by people with MS.

The study was supported by Novartis Pharma AG, maker of FTY720.

The American Academy of Neurology, an association of over 21,000 neurologists and neuroscience professionals, is dedicated to improving patient care through education and research. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, epilepsy, multiple sclerosis, Parkinson’s disease, and stroke. For more information about the American Academy of Neurology, visit

Now, I have been saying all along that the only reason last year's reports said that so many people "remained relapse-free after 2 years" was probably because they had only been on the drug for 2 years to that point. Now, a year later, 67% are relapse-free after 3 years!

I was at a point where I could not have imagined being relapse free for more than 3 months before I started this trial. Next month will be a YEAR since my last flare. I can't even fathom this luxurious vacation from the ravages of MS lasting 3 times that long.

True, I had a pretty rough time with upper respiratory infections this past winter, but that's a sacrifice I am more than willing to make.

I picked the right study to join is all I can say.

Monday, April 14, 2008

Co-payment for MS drugs going sky high

According to the New York Times article yesterday, insurance companies are no longer charging a flat co-pay of $10 or $20 for the expensive disease modifying drugs many MSers have come to rely on in order to reduce relapse rates and maintain some level of quality of life.

Instead, when they visit the pharmacy now, they may be hit hard in the pocketbook. Co-pays are now sky rocketing to 20-33 percent of the drug cost with a maximum charge of $325 per prescription. For the patient, this means hundreds of dollars just to maintain their health every month.

Read the article here.

I am terrified about what will happen when this Fingolimod trial ends and I no longer get my medication for free. I strongly believe that the medicine is the reason for this long period of remission that I am enjoying, and the health care system is putting a price on that for me. I know it will be out of my reach once it has gone to market and I am forced to pay for it.

Sadly, I guess I had better enjoy the rest of this year and the extension phase as being what will surely be the best years, health wise, of the rest of my life. After they require me to pay, I won't be able to afford remission from this awful disease.

Not only does this new Tier 4 pricing affect MS drugs, but drugs for many other expensive illnesses such as cancer, Rheumatoid Arthritis, Hepatitis and many others.

This past weekend I was cleaning out the top drawer of my dresser where I have long kept any and every pill I've been prescribed for MS symptoms. I also kept the info sheets that came with these meds, and I found a sheet on Copaxone from 1999. The price was on it. $896. The last time I got Copaxone was a month before starting this clinical trial in 2007. The price was $2700. It is inconceivable to me that this drug could have cost so much back in 1999 and to soar to nearly triple that cost in 8 short years is purely greed-driven evilness. To profit so blatantly from our suffering, and to dangle the promise of a drug that could help over our heads and just out of reach is nothing short of inhumane.

When the pharmaceutical executives become ill with MS or Hep C or cancer, will they THEN realize what suffering their evil greed has caused those less fortunate? Probably not, but I can't help myself...I want to see them suffer.

Sunday, April 13, 2008

Paint like Jackson Pollock

Just go to and paint to your heart's content. I did the example above with just my right handed mouse -- and I'm left handed!

It's so fun to do and all you have to do is press the space bar to clear the page and start over. Oh, and each time you click the mouse you get another paint color. The faster you move the mouse, the thinner the line. Stop and you get a big dot.

I "saved" my work by using a screen capture utility, but you may be able to do the same by pressing the "print screen" button which can be found on most standard keyboards above the "insert" key which is above the "delete" key on the keypad just to the right of the main one.

Comments about art lately have prompted me to share this. I'll work my bigger art post around in my head a while before committing it to posterity here. Give me a day or two to mull it over.

There is much to be said about artistic MSers adapting to their new limitations. I'll share some of my techniques and pointers for doing things and perhaps you will share yours in the comments.

Until then, have fun painting like Pollock. :-)