Tysabri Update

You may be surprised at this Tysabri update if you've been coming to our site for a while. When we first wrote about this disease modifying treatment option for MS, we were very adamant about not wanting Cir to try it. Why? Because of the possibility of contracting PML (Progressive multifocal leukoencephalopathy) - a rare, fatal and at the time, irreversible, brain infection.

(Link above will open in a new window on our site to one of our visitors who developed the infection. She unfortunately was one of the first people to try this treatment during a study, I believe. She survived; however, it took quite a long time for her to recover.)

Well fortunately, over the past several years, doctors and scientists have been able to study this treatment and are now able to predict who might develop PML. If after testing you are not at risk and you begin taking Tysabri, your risk level may go up the longer you take it.

While you remain on the treatment, your doctor will test you regularly to see if your case has changed. If you are still not at risk, you can continue taking the infusion. Once your test comes back showing you are at risk of developing PML, then you will need to stop taking Tysabri and change to another treatment.

Why did Cir change?

The possibility is still there, you say, so why did Cir change his mind about taking Tysabri? (Yes, he's taking it and so far, he's had his first two infusions). To answer your question, he changed his mind after talking to several of his friends who have MS. They have been having very good results with the treatment. Seriously.

They've been walking better, symptoms are being eliminated, less fatigue - just overall feeling better, so definitely a plus. That's not the only reason Cir changed, though. The main reason is the risk for developing PML is almost gone.

Not totally, but now it is manageable. The test that shows if you might get it is performed at regular intervals, so that if your levels go up, your doctor can take precautions and either watch you more closely or stop the medication all together. 

I must admit, I am still a little nervous. (I don't want anything to happen to my baby - he's been through so much already). I do believe the benefits of Tysabri do outweigh the negatives. The fact that the scientists have dealt with the risks so that your doctors can now catch any changes in your health situation quick enough so that you don't develop PML, makes it a viable treatment. Soooo...., here we go!

So far so good :)

Yes, so far, so good. Cir is two infusions in - one infusion each month. The first few - I think 5 or 6 - infusions he needs to stay an extra hour for observation (yes, the infusion takes an hour), to make sure he doesn't have any adverse reactions.

• pain
• itching
• rash
• trouble breathing

Any symptom (even those not listed) that might be an indication that he is having an allergic to the medication. The second infusion apparently is the one to watch. More often than not, if you are going to have a reaction it will be the second time. And thankfully, there was none. Yay!

Cir's happy. He feels like he has more strength in his legs and more energy overall. Unfortunately, he's having problems with back pain and burning, most likely due to this wacky weather. Hopefully that will change in the next couple months. We will keep you updated on his progress and would love to hear from you if you take Tysabri as well. 

Your Tysabri update?

You can let us know about your Tysabri update as well. Even if you are still afraid to take it - read what other's experiences are to help you decide whether or not this treatment is for you. Even if you do decide to take it, you will, of course, need to get tested first before you can begin. And if you've been taking it for a while, let us know how many months and if your experience has been positive.

We've met people who have been taking Tysabri from several months to several years and they're doing great. We're optimistic at this point. Are you? Let us know. Scroll down and use the form below.

Want to learn more about Tysabri - go to their site here (opens a new window). Or read about it on our page here.

Cir's quick Tysabri update videos

Sorry for the shaky video. Just getting the hang of making them for YouTube, so bear with us on that - we'll get better, hopefully. And you can also add your updates in the form below the videos if you'd like to share your experience with us and our visitors.

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