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I survived!

First infusion down. The only complication was that the RN that did my drip left a bruise. Makes me sad. Also it took 3 hours, not 2. Now I have scheduling problems. So for people thinking about Tysabri infusions, a quick walk through.

The room was nice. Yes you can bring snacks and drinks. I brought a venti gingerbread latte. MMMMM!!!!!! I decided that I deserved that today. So did my mom, she treated. I brought her too. They referred to her as my cheerleader. 🙂 I got to sit in a big comfy black leather recliner. There were about seven other chairs in the room, and yes they were all full. Every chair gets it’s own flat screen t.v.. I didn’t turn that on, so I don’t know what types of channels that got. There was an extra chair for a guest with each recliner, not as nice, but still a place to sit. Where I felt that they could have improved; they could have added a kurig, like they had in the waiting room, and free WyFy would have been nice. I know I ask too much sometimes. I just figure if I am spending $800 a visit (not including the drug), there should be some creature comforts. There were muffins and cookies though. I didn’t eat any of those, but it was nice that they were there. First thing that they did was check my vitals. (temp and blood pressure) Then they put in the IV. Then they called the lab and told them to mix my medication. I didn’t realize that the medication required mixing, that made me feel like I hadn’t done enough research, but maybe I just forgot. That took about 15 minutes. Before they gave me the infusion, they gave me a Claritin to “ward off” an allergic reaction. When my medication came up from the lab they hooked it up to my IV and I was off to the races. Or for a nap, depends on what you want to do I guess. 2 of the other people in the room were sleeping. One brought a portable DVD player and was watching a movie with headphones. One was watching the news on TV. I played with my iPhone and talked to my mom. A definite must to bring was a blanket. I thought that it was a little odd, cute, but odd that I got a box in the mail with a blanket and carrying tote from Biogen after I was officially signed up. Well today I realized how vital those pieces were. Not only did I use the blanket, but I stole my mom’s sweatshirt. I was freezing. The Tysabri drip took an hour, and then they switched it out for a bag of saline that took a half hour to drip. After that they checked my blood pressure again and made me stay for another 15-20 minutes to make sure that I didn’t have any bad reactions. Then I set up my next appointment and off I went.

All in all everything went very smoothly. My biggest problem now is scheduling. The infusion center is only open during the day on weekdays. So I am going to have to ask for help with the kids. I hate that, but there doesn’t seem to be any way around it. And taking Noah out of school one day a month is unacceptable. 😦

 
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Posted by on December 6, 2011 in Life with MS

 

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The Decision

There is an enemy among us. We first noticed it a year ago. They are growing in numbers and destroying our defenses. We tried to get them to change their ways and come back into the fold. They refused. I think, no I demand, as the queen of this domain that we need to take stronger action against them. I have decided that it is time to pull up the drawbridge. I’m not sure how we will weed out the ones that are already here, but they will be scared. There is no help coming from the outside now. They are all alone…… The citizens of this fair land can now rest easy knowing that the walls are now impenetrable.

 

I have decided to go on Tysabri. Yeah! JCV I dare you to show your ugly face! I’m ready!

I can’t wait to feel “normal” again. I just started the paperwork and hopefully it will all be processed rapidly and I can start as soon as possible. I did a healthy amount of research on both Gilenya and Tysabri. And while they both seem to be decent drugs when it comes to less lesions on your MRIs and less symptoms, Tysabri does seem to come out on top. However that is not why I made my decision. Oddly enough, being the sceptic about side effects that I am, you can’t even blame that for my decision. It was the actual effects of the drugs that scared me. As far as I was concerned, my decisions were instant death or slow horrible sick all the time because I have no immune system death. What made me decide to choose Tysabri is the fact that while on this drug I will be constantly monitored. The infusion center that I am using, actually it helps that I joined a study, does blood tests every time that you have an infusion. The study that I joined is about the blood tests. They are monitoring people’s reactions to Tysabri. Right now the research is very promising for me. It says that 0% of people who have come back negative for the JC virus have had any problems with it within the first year. It also says that .03% had a problem with the JC virus who were tested positive for it in the beginning. Again that is all within the first year on Tysabri. My blood test just came back negative for the JC virus. Yeah! I am very confident about taking this drug, at least for the first year. Who knows, maybe in year something new and less life threatening will come out. The drugs for MS management have been coming down the pipeline pretty quick within the last couple of years. I am feeling very confident about my future right now. Which is not an easy thing to talk yourself into, especially since every MRI I have shows more lesions. 😦 Hopefully that is all about to change.

Right now I am looking forward to a Christmas where I am not depressed and I have energy to run around with the kids like I used to. Also if the dizziness went away and I could enjoy a spiked eggnog without getting sick, I would really appreciate that too.

 
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Posted by on October 30, 2011 in Life with MS

 

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Wish that there was some kind of guarantee.

I went for my blood test today. They took more than I thought that they would but I got some more information. I got to see the infusion room. That was nice. Not as nice as I was expecting, but still nice. Big comfy leather lounge chairs, everyone gets their own flat screen, I can live with that. Especially since you would be sitting there for 2 hours. I didn’t notice any coffee machines though. That might be a deal breaker. 🙂 I have to wait 4 weeks for my results. They said that they would call me when they come in. I think that I am more nervous about those results than I was about finding out that I have MS. Of course that didn’t take 4 weeks. So instead of waiting for the results to come in I am trying to figure out what I would do either way. I have decided that if it comes back negative I will definitely start going on the Tysabri immediately. If it comes back positively though I don’t know what to do. My doc feels that I should go on Tysabri anyway. I am reading very mixed things online about this. I read that one of the things that the blood test tests for is your CD4 levels. I still have to do more research on what that even is, but what they said was that if your CD4 levels go below 500 then they kick you off of the Tysabri. Apparently if you go below 400 you are now pretty much on the cusp of getting PML. But like I said I still have to do more research. . While I was there they told me that they test your blood every time that you come in for an infusion. I’m not sure if it’s because I joined a study having to do with the blood tests or if it is just a precaution that the office does. I asked what happens if the blood test does come back positive. They said that they will just monitor me more closely. What exactly does that mean? I don’t know.

I think that it is very frustrating that my choices for medication right now are the two things that when I was originally picking out a medication I said Yeah right who would take those.

The other choice that I am considering, should I be in trouble of getting PML, is Gilenya. Which is a pill. That may be it’s only redeeming value. It also does not have great side effects. To the point where they are considering pulling it as an option in the US. I don’t even think that it has been out for a year and it is causing serious heart problems. I believe that it was said that right now the dangers of the side effects are not necessarily on a good enough balance with the positive results of slowing down the progression of MS. But again I need to do lots of research.

So this weekend will be;

All the house work I didn’t get to do during the week

Plus about 20 loads of wash that have piled up

And research, lots of research!

This is what happens when I have a busy week and as of recently (due to the November elections) an absentee husband. 😦

 
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Posted by on September 30, 2011 in Life with MS

 

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