Rituximab

I am so sorry that I never updated the events after July!! It has been in my mind every week, and just never had the time to get it updated. So, bear with me as I fill you in. :) At the end of July, we found out that my insurance company approved Rituximab!! YAY!! I did not think that was going to happen, but they came through and there was absolutely no issues. This was great news! I was scheduled to have my first infusion near the middle of August. At that time, I went and told my boss about the situation. I had not told them that I had MS. Only a few people that I worked with knew that I had it. I went into their office and told my 2 managers my situation and that the new drug that I would be starting would compromise my immune system. Immediately they said, "Let's get you working from home then!" I had hoped this is what they were going to say, but I wasn't sure. We had been told that no one was going to go home to work for the rest of year. I wasn't sure what I was going to do. Well, after getting the approval and my computer set up for me to bring home, I started working from home on August 15th. On August 5th I had an appointment with my PCP for a follow up for my anxiety medication that I was started on. At that visit, I told her the new drug that I was going to be started and she had suggested that I get a pneumonia vaccination. I was a little leary about doing that as usually I talk to my neurologist first. But, she reassured me that it was highly recommended. I received the vaccination feeling okay about it. Around the same time I started working from home, Angela with my neurologist office called to confirm everything to set up the time to start my first infusion. At the very end of our conversation I remembered to tell her that I received the pneumonia vaccination. She then told me we would need to wait to start my therapy in order for the antibodies to get to their full potential...or something like that. BUMMER!! So, I had to wait 3 more weeks to start my therapy. September 7th was the day that I started my first treatment of Rituximab. This is a 5-6 hour infusion that has to be done at Bergan Mercy Hospital. I was a little nervous going in because I had completely no idea what to expect. I got checked in and went to the infusion center. Before they started the rituximab, I had to take some Tylenol and they give me IV Benedryl. This is to counter act the side effects that would likely occur with the meds. I tell you what, I don't do well with regular Benedryl, but the IV stuff is a kick in the pants! They put it in real slow but by the end, the room starts to spin and I can barely talk. It basically put me right to sleep like the regular Benedryl does. I just sat/layed there for hours. Tyson was able to come visit me since he works just around the corner from the hospital. That was nice to have him support me like that. By the time my infusion was complete my blood pressure was really low. I usually have a low reading, but this was 92/59 I think. I wasn't real dizzy, but the Benedryl was still making me so tired so I was able to just go home and sleep. September 14th I was required to have a steroid IV treatment. Home health came to my home and completed this for me. I had a friend come take the IV out and it was as easy as pie, except for the side effects of steroids. lol! September 21st I was required to have my 2nd dose of the Rituximab. Same thing that happened on the first treatment except I wasn't nearly as fatigued as the first round and my blood pressure was a little better. I started the therapy at 116/70 and ended at 95/60. I guess the drug can have that effect on some people. I had some amazing support with not only my awesome husband but with friends that I work with. They would text me to check on me and make sure all was well during my therapy. My work has allowed me to call in during meetings with work so I don't have to expose myself to the germs in the office. If I do go into the office, I make sure I wear a mask and sanitize the desks that I may sit at. For Christmas this year, I went home to Utah to surprise my Mom for her 60th birthday and my Dad for Christmas. It was so incredibly awesome but I was nervous to fly on a plane and be exposed to more germs. I sanitized everyone's hands a few times a day and even took some Lysol wipes to clean the seat I was going to sit in on the airplane. I have been doing pretty good since Septembers infusion. On Tuesday, Jan 10th I decided to take a break and take a nap. When I woke up, something didn't feel right. I felt like I was getting sick. :( I took some DayQuil since I still had to work and didn't want to be more sleepy. That night I went to a movie with some girlfriends and my pulse was through the roof. I had no idea what was going on. I came home and went to bed, but I slept horrible that night. I had a cough and a fever and I was so achy! I called into my dr office to see what I can do and they had me come in. They ran an influenza test but it came back negative. She treated me with Tamiflu anyway and sent me on my way. I came home and went to bed. That night was worse then the first. I still had a fever and was more achy than the first. I was shaking and I couldn't control it. I have lost my voice because my cough is so hard that it was irritating my throat. Tyson got another blanket for me and let me snuggle next to him to get me warm. I was able to calm down and go to sleep. That morning, I took some AlkaSeltzer and tried to get more sleep. It didn't do much for me. It was an off and on sleep. But, I just felt miserable, horrible, like I was dying. :( Or as my Dad would say "Like a bear chewed me up and pooped me out over a cliff". I called the dr and they said to just drink lots of Gatorade and IBProfen. My friend who dropped Kayda off from school also dropped off some Gatorade and IBProfen, just what the dr ordered! Her husband is sick with the same thing. Well, as soon as I drank a whole bunch and had some pain meds, I felt so much better! I still had a fever but I think I was dehydrated. Here we are today, and I am still sick with no voice, but my fever broke yesterday so I am feeling a little better. So, I am on my journey of being immuno-compromised. I need to be more careful, especially this time of year. Every 6 months I will receive an infusion unless my blood work states I need to have it more often. I get my blood work done every month to my sure my lymphocytes are at the appropriate level, which is 0 or close to.