If you've arrived at Tysabri 2 first and would like to read part 1 first, click here.
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.
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.
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.
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.
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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Cir & Akrista
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