169-365: Tysabri Originally uploaded by mikehillwig
I started a new chapter in my life last week. No longer will I be injecting myself several times a week. Instead, I’ll be making a trip into the infusion unit at Beth Israel Deaconess Medical Center for an IV infusion of Tysabri.
When I made the appointment, they told me to call earlier in the day to do the “prescreen checklist.” This is something the nurses have to do to make sure that you’re healthy enough for Tysabri. It does compromise the immune system, so they need to be sure. By doing this in advance, the nurse has the opportunity to order the meds from the pharmacy, meaning they’ll be ready when I arrive.
When I got to the infusion, Chris, my nurse, led me to a hospital bed, told me to get comfortable, took my vitals, made sure everything was in order and started my IV. She went to get my meds and discovered a problem. It appears that they hadn’t arrived from the pharmacy yet. She told me this may take a little while. I really didn’t mind. I had a book that was keeping me company. She brought me a sandwich, a soda, and some cookies. Really. They fed me!
When Chris came back with my meds, she did apologize. It turns out that she hadn’t sent the order to the pharmacy earlier in the day. Again, it wasn’t a big deal to me. I was in no hurry, and I had a book. When you deal with doctors as much as I do, you learn to bring a book.
As she started the IV drip, it was completely uneventful. The infusion takes an hour. If you’ve ever had an IV infusion, this was just like any other. At one point, I fell asleep. I vaguely recall someone coming by and putting a blanket on me.
After the infusion was done, I had to stay in the unit for an hour for observation. I guess in the initial trials, a few people got light headed after their infusion. Again, I had a book and took a bit of a nap.
The whole situation was uneventful, and I do love the nurses at BIDMC’s infusion unit. They’re all incredibly friendly.
Saturday, I was a little tired, but nothing too bad. I love not having to give myself an injection anymore.
I have a lot of things going on, yet at the same time, my life is pretty quiet.
Last Monday was the Boston Marathon, and we cheered on my friend Jamie. I’m so proud of him .
We’re in the middle of a project at work that’s keeping me pretty busy. I’ve put in a lot of hours the past week.
I’m still absolutely loving my new camera. I’ve taken almost 2200 pictures with it so far. This one may be my favorite so far.
I went to see my neurologist last week, and I’m not very happy with the meds I’m on right now because of the side effects. We’re going to start the paperwork to get me on Tysabri. It’s the once-monthly IV infusion, opposed to the thrice-weekly injection I have now. I’m happy to be losing the side effects. We have to do a bunch of tests to make sure it’s safe for me to take Tysabri. There have been some deaths related to the medication in the past, but I don’t appear to have any of the counter-indications.
I’m off to NYC next weekend. It’s my friend Jay’s birthday, and we’re celebrating. On top of that, I’m getting a tattoo (on my back) covered. We also have awesome seats to see Avenue Q. I’ve not seen it before, so I’m pretty excited. Reggie will be staying with my friend Ulli and her Yorkie, Mr. Duke. I know he’ll be in good hands.
Reggie and I have had a house guest for the past few days. My friend Chris left his Cocker Spaniel, Oliver, with us. He was such a loving boy. He and Reggie had some dominance issues, but nothing I couldn’t clean up. I didn’t like that rug, anyway.
My neurologist is absolutely amazing. Dr. Marion Stein at the MS Clinic of Beth Israel Deconess Medical Center never ceases to amaze me. She’s kind of old school, and I trust her completely. I’ve been dealing with some issues, and she gave me the option of some heavy steroid therapy.
I’m on my third day at the Infusion Unit at BIDMC. This is my third daily dose of 1 gram of Solumedrol as an IV drip over four hours each day. That will be followed by an 11 day taper of oral Prednisone. I do three days of 80 MG, three days of 60 MG, three days of 40 MG, and two days of 20 MG.
As you look at the article about the steroids, you’ll see there are some pretty intense side effects. My neurologist, being as good as she is, has me on some other stuff to deal with that. First, I’m on a light dose of lithium to help take off the edge and irritability. She also has me on Serax to help me sleep at night. That stuff is amazing.
I start the oral prednisone on Saturday, and Dr. Stein did warn me that I’ll probably crash on Sunday. She gave me out of work until Wednesday, but if I’m out past Monday, I have to use my short term disability, and that means I lose a week of pay. I plan on going back to work on Tuesday, meaning if I miss Wednesday, I use my sick time.
In other news, I have a date tomorrow night.
I went to see my neurologist this morning. She’s awesome. One of the things we talked about is the fact that my liver doesn’t appearing to be functioning properly. It explains why I’m B12 deficient. Before anything else, she ordered another set of bloodwork to confirm her suspicions. If the bloodwork comes back as expected, I’ll be coming off the Rebif. That’s three injections a week I won’t need to deal with. Obviously, this makes me very happy. But there is a catch. I’ll also be starting B12 injections. That means an intial week where I have injections three times that week. After that, it’s a monthly injection. I can handle this. The problem is that it’s an intramuscular injection. While I’m not thrilled about this, it will hopefully get me over this “always tired” thing.
I need to wait a few days before the bloodwork comes back. Then we’ll know for sure.
Having MS sucks. There is no other way to put it.
Yesterday, while Reggie and I were visiting Beth and Paul, I just felt really wiped out. In fact, at one point, I had to go upstairs to lie down for a while. It sucks to always be tired, especially when you go someplace exciting like New York City. But living with MS has taught me to take it easy and not get myself too worn down.
The other thing is that you need to become a pro at navigating the insurance system. I work for a great company, and we have outstanding health insurance. But you have to know how to work navigate the system. I started the process of ordering my prescription last week, and today I got a letter from the insurance company that stated my Rebif had been approved. The prior authorizations for medication are always a pain in the ass, so having that taken care of is a huge relief. So tonight I called the pharmacy to find out the status of the order. I have enough on-hand to last me another three weeks, so I’m in decent shape, but I don’t dare let them know that. They think I’ll be out early next week, and that causes a sense of urgency I need to get this process moving without running out of meds. When I called, a very nice woman named Carolyn explained that they requested the prescription from Dr. Stein but hadn’t received it back yet. This means tomorrow, I’ll be calling my doctor’s office to poke them. After they send in the prescription, then I’ll have to call the pharmacy again, who will tell me it’s held up for insurance reasons, at which time I’ll fax in the prior authorization letter from the insurance company.
Yeah, I’ve been around this block a few times. It’s a pain in the ass, but I absolutely have to do it.
I take Rebif for my multiple sclerosis. It’s a thrice-weekly injection that I give myself.
Several weeks ago, I saw that I was running low. So I called the pharmacy that fills it, and they found the first problem. My prescription had expired and they had to get a new one from the doctor’s office. That took a week or so. My doctor’s office is terribly inefficient. Then I got in touch with the pharmacy and they tell me that the insurance is rejecting it because they need a prior authorization. The doctor’s office took forever getting that done, too.
Everything seems to depend on getting the doctor’s office to move, and these people just suck. I’m seeing the new neurologist in a few weeks, and for that, I’m very happy.
I’ve mentioned before that my old doctors’ offices were at the BU Medical Center. It’s not in the best neighborhood. The doctors are decent but their support staffs suck. A friend of mine referred to it as “hiring girls from the neighborhood.” Unfortunately, he has a point.
At this point, the meds will ship tomorrow, and I’ll be injecting again on Wednesday night.
I’m going to London in a few weeks. This will be my first trip abroad since being diagnosed with MS. Since I travel periodically with my job, I’ve had to deal with injecting while in a hotel. It’s not really that bad. Getting through security isn’t usually that big of a problem. I did have a situation when I was going through Washington’s Reagan National Airport and the TSA dude started taking my cooler with the meds off the belt while I was still waiting to go through the metal detector. I started making a huge fuss and screaming that an agent was taking my medication out of my sight. I had a supervisor by my side in no time.
This trip will be a little different in that it’s a long flight and a long layover. Once I get to London, putting the meds in Steve’s refrigerator will be the easiest part of the whole thing. Depending on how my med schedule falls that week, I might end up giving my injection on the flight over. I’m not sure I like that idea, though.
I spoke to a US Airways agent, and they said to let the flight attendant know when I got aboard the aircraft that I had meds I needed to keep cold. She said they would at least be able to provide some ice. I’ll take a few plastic bags along for that. I’m sure we can make this work out okay.
My real concern is getting through airport security since my meds are a liquid. However, I also have the prescription label. And duh, they’re in a syringe.
MS Lifelines is sending me a new portable sharps container for the trip. That will certainly come in handy, too.
One of the other things I’ve done, just to be on the absolute safe side, is to register my trip with the US Embassy in London. You can do that via the US State Department’s website. God forbid something happen to me while I’m there, but if the US Embassy gets word that I’m in any trouble, they’ll see that I have multiple sclerosis and take Rebif three times a week. This may sound like overkill. It probably is. The United Kingdom is hardly a third would country. It’s just that the last thing I’d want is to be lying in a hospital in any world country where the doctors don’t know why I have no feeling on the left side of my body.
I was on my heath insurance company’s website this morning, looking at some things. I have spent $745.44 in the past 12 months in co-pays for my meds. That’s what I paid. So I did a little more digging. My health insurance has spent $21,130.41 on my prescriptions. My Rebif is $1576.01 every month and the Strattera costs them $82.51. That’s a huge chunk of change. And it’s exactly why I can’t be without health insurance.
My primary care doctor has me taking about 1800 MB of Ibuproffin daily right now due to an issue with my back. It’s not MS related. However, that heavy dose of ibuproffin is causing a different reaction in my injections. I’m bleeding and bruising more, now.
It’s not that big of a deal, but I’m seeing more bruising this week and it’s worth noting.
When one is on a drug therapy that’s injected, one of the things heard from doctors and nurses is to look out for any injection site reactions. In my three years on inject-able therapies, this has never been an issue—until last week.
When I was doing my weekly injection of Rebif, immediately after pulling out the needle, I saw blood, and it wasn’t the usually little dot. I actually had a little more than usual. I must have hit a vein because I don’t usually bleed much. Over the next few days, I found myself with a bruise and some soreness at the injection site, indicating that I’d most certainly hit a vein.
If that’s the only injection site reaction I’ve had in three years and it’s because I wasn’t careful enough to avoid hitting a vein, I think I’m doing okay.
