Well I think an update on the MS is long over due. For all of you that did read the post where told the results of my MRI I will post a quick recap to bring you all up to speed. When I went in to see the doctor a few weeks ago she told me that for the first time since I was diagnosed I was stable! It is a great feeling to know that I was finally on the drug that was helping me. So after she told me that she then told me I had to get over whatever my issue was with the new infusion center and go. I was and am still mad about it but I will do what they want me to do because this is the only thing that has worked for me. My next infusion is on the 2nd of April. I am hoping that all goes well with it because I have to go alone because of work and the fact that Grandma is going out of town that day.
I don’t think when I wrote my last that I really got into what the medication I am on does for MS and the bad condition it could cause. I am on a drug called Tysabri that is administered once a month by an infusion. An infusion is something similar to what they do when you are having chemo or getting a blood transfusion. Tysabri was released in 2004 after that it was take off of the market because a few people developed PML or Progressive multifocal leukoencephalopathy. This is a very rare viral brain condition that causes progressive inflammation of the white matter in the brain. From what I was told this virus lives in the kidneys of people but most people without compromised immune systems can keep it under control and it causes no problems. Tysabri works by attaching to the blood brain barrier and keeping the immune cells out of the brain. So because the immune system can’t get up into the brain PML can take over. There is currently no test to test for the virus. They released the medication back on the market in 2006 with strict warnings and stipulations. When I signed up to do this drug I had to sign a waiver saying that the FDA could look at my medical records at any point.
So far this is the only thing I have found to work. I know the risk of PML greatly increases after you have been on the drug for two years and I am about at that point. Today 31 0r 33 patients have gotten PML so that makes the odds about 2 in 1000 that you will get it. For me the benefits still out weigh the risks. That is a little bit about the drug that I am on let me know if you have any other questions about it!
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This is a very informative post, Margaret. I can't imagine having to go in for a monthly infusion; it can't be fun. I'm so glad you've found a drug that's working for you and helping though. It sounds like the benefits definitely outweigh the risks in your case!
Hey Margaret! Sorry it took so long for me to get back to you! Thanks SO much for your kind comments, and for visiting me on my SITS day! It IS cool to have someone to talk to who "gets it" about chronic illness! I'm glad you found something that works for you, and pray that the PML stays FAR away!
I sure hope this drug works for you and doesn't cause the unwanted side effects. You don't need that! I have something for you over at my blog. Come and get it!
You have a very scary life. You are so brave to face it the way you do. I don't know if I could manage the way you do. I really admire you and hope things keep going better for you.
I am so glad this is working for you!
My friend has MS and medication is really helping her too. So glad we live in this day and age!
I bet with any type of choice like this, it requires a lot of thought. I am glad you were able to find one that works for you, and know that they are hopefully making more that will come without those side effects. Thank you for sharing.
Is it something you are going to do the rest of your life? Or do they have limits on how long you can take it?