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Tysabri
Tysabri has multiple personalities – no, just kidding. But it is known by several names. One of the disease-modifying treatments for MS, it was first known under the brand name of Antegren. Now natalizumab, (the chemical name), is called Tysabri.
There is still much concern around this particular immune-modulating drug. The company, Biogen Idec Inc. produces the antibody-based drug along with Elan Corp. In fact just recently, two patients developed the condition PML (progressive multifocal leukoencephalopathy). That's quite a mouthful isn't it?
PML is no laughing matter, however. Even though it is rare, it is also a potentially fatal condition. The FDA issued an updated Safety Alert for natalizumab. Click here to read more about it. This link will open in a new window.
As recently as last month, the following was reported in a Market Watch article about natalizumab:
“Late Thursday, Biogen reported in a regulatory filing that it had received word two more cases of PML, an extremely rare but dangerous condition, had been acknowledged in Tysabri users. Both of the patients are in Europe.
Biogen said both patients were alive and stable. One patient remains hospitalized, while the other is recuperating at home. Both received blood-plasma transfusions to flush the drug from their systems.
One of the patients had taken Tysabri for about 17 months and had never taken other MS drugs. The other was on the drug for 14 months, and had taken in the past other immune-modulating MS drugs, namely beta interferons. – Aug. 1, 2008; Market Watch.”
Despite it's rocky start, this medication is still considered a premium in the world of MS treatments. In fact, Cir's doctor calls it the Cadillac of immune modulating drugs for multiple sclerosis. A little more about that later.
Taking Tysabri - Yes or No?
Cir's doctor has suggested he consider taking this treatment more than once. He has also been honest with us about the side effects. PML is a rare viral infection of the brain. According to the statistics, one in 1,000 will possibly develop the condition. But once you do get it, it is incurable and could lead to death or severe disability. (This result has changed based on certain criteria being met).
To read the form given to each patient before starting the treatment and before receiving the infusion click here. This is a pdf file from the FDA site. It will open in a new window.
We talked it over each time the doctor suggested trying this disease-modifying drug. The fact that it is only taken once every month was very tempting for Cir. But the statistics were a risk neither he or I was willing to take, (at least in the early stages of it's development).
- Taking natalizumab increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). If PML happens, it usually happens in people with weakened immune systems.
- No one can predict who will get PML.
- There is no known treatment, prevention, or cure for PML.
Sorry, but no thanks. We're not ready to take that chance.
Making the right decision
Taking Tysabri is a decision you shouldn't make on a whim. Examine all of the factors before making that step. Talk to your doctor, your family and anyone involved in your care. If you have access to the internet, do some research. Talk to others, if possible, who have or are taking it.
We all know that multiple sclerosis can be a devastating disease. If the risks involved in taking natalizumab are less than living with your particular symptoms, and you feel you can deal with the consequences, go for it.
Just go into it with your eyes open. Know all the facts. Don't be pushed into making a decision by anyone, including your doctor. Even your family may try to push you into making a quick decision. But remember, you have to live with the consequences of that decision, not anyone else.
About Tysabri - Dosage and frequency
Natalizumab, as I said earlier, is one of the disease-modifying treatments for MS. The damage in multiple sclerosis comes about when the white blood cells cross the blood-brain barrier. Tysabri stops this from happening.
Tysabri is given once every four weeks through an IV. You would need to be enrolled in the TOUCH Prescribing Program. Before receiving Tysabri your doctor or a nurse will explain the program to you and you will sign an enrollment form.
Each time you go in for a treatment you will be asked a series of questions to see if you still feel that Tysabri is right for you. After receiving the IV, you will need to stay in contact with your doctor. Report any medical problems that get worse or last several days.
What does Tysabri do?
How exactly does natalizumab help people with MS? I will try and explain it the way Cir's doctor explained it to us. He does a much better job at it, but here goes. It all begins with the cells of the immune system or white blood cells.
There are special “helper” white blood cells that become “sticky” in response to signals sent from white blood cells that are already in the CNS or central nervous system.
One of these “sticky” cells, called VLA-4 or Very Late Antigen 4, attaches to white blood cells (lymphocytes) passing through the blood. Another type of “sticky” cell called an alpha-4-integrin, is on the surface of the lymphocyte. When they pass into the blood brain barrier they cause the damage common to MS in the CNS.
Natalizumab causes the alpha-4-integrin to become “slippery” so that it cannot attach itself to the VLA-4 cells and enter the CNS.
Maybe it's right for you
All of this can be a bit confusing, I know. It is for me, too. There are plenty of places to find out the scientific aspects of Tysabri if you would like to. The thing is that it may help some people. Who knows, you may be one of them.
Cir has met several people who love it. They have improved while taking it. They have, hopefully beaten the odds. Others have started, then decided to stop based on more information.
Living a life with MS is different for each person faced with such a disease. There are so many questions and variables to deal with. Even for the most healthy people without health issues, life can be discouraging at times. So with MS, life is even more challenging and that's putting it mildly.
Cir and I can understand taking a risk for at least some improved health. But for us, for Cir, we'd rather wait for something else.** It's possible that a cure is right around the corner – you never know.
UPDATE: Guess what? Cir changed his mind - yes, go here to read about it.
There are several other side effects of Tysabri or natalizumab. To read more about them, click here.
To go to Biogen's site, go here. (Opens a new window)
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