I have now actually completed both of my Rituxan infusions for this round. This was probably the most frustrating round as I was trying to figure out how I would feel after each infusion so I could plan but everyone I talked to seem to have different experiences with the medicine. SO my disclaimer is my experience may be different from yours.
Infusion Day
Both infusions were scheduled for 8AM since this medication takes a pretty long time to infuse and if there are any reactions it takes even longer so I was the first person at the infusion center. The infusion center is the same one I used to go to for IV fluids before I got my port 2 years ago (although it has since moved from a building across the street to inside the hospital) so I knew a good amount of the nurses and it was nice to catch up. One of the new nurses I knew as well because she was an RA in my building freshman year, small world.
For the first infusion my port was already accessed but for the second infusion they had to access it when I arrived. During the first infusion I was also able to get my monthly blood tests pulled off my port which was nice because the outpatient lab refuse to use the port (even though it is already accessed) and complain about my veins. After he port and labs were dealt with they started 125 mg of IV methylprednisone (steroids) followed by 50 mg of IV benadryl and I had to take oral tylenol. These are what is called premeds which help prevent me from reacting to the Rituxan. By the time all the premeds are in my system and the Rituxan is actually started I have already been at the infusion center for about an hour.
I am also super sleep at this point from the IV benadryl but I am not good at sleeping in the infusion chair so I am in an out of consciousness. It was a little frustrating because I couldn't really do anything productive or even follow a movie. At least when my sister came around lunch time I could hold a conversation with her. For whatever reason that seemed to take less energy than even watching a movie.
The Rituxan is started at a really slow rate and they up it every half hour. For the second infusion they start at a slightly higher rate if you have no problems, which lucky I did not. So I finished the first infusion about 1:30 and the second one at about 12:30.
After I went home that day I felt the affects of the IV benadryl and pretty much slept on the couch the rest of the day both times. I was also pretty weak an would get a bit of a head rush every time I tried to stand up.
The Day After
The day after the infusions the benadryl had worn off but I was really starting to feel the effects of the steroids. I was kind of like an energizer bunny on the day after each infusion. After the first one I took advantage of it to cook for Rosh HaShannah and the second time around I got a head on some school work and appointments.
Day 2 Post Infusion
This was the day I crashed about mid day I went from feeling the steroids to what I am guessing was more the side effects of the Rituxan that the steroids were covering up. There was a full body weakness and exhaustion but my mind was still a bit wired so it made it tough to actually sleep or anything. This day after the fist infusion happened to also be the first day of Rosh HaShannah so I pushed through and went to services for an hour and a half and had people over afterwards. I really paid for that on day 3. The second time around I seemed to be weaker on this day but that may have just been me actually listening to my body instead of trying to celebrate a major holiday.
Day 3 Post Infusion
This seemed to be the worst day most times although it was way worse the first time around and I totally contribute that to overdoing it day 2. Day 3 I had trouble waking up, sleeping till about 11 am which is really abnormal for me. When I did wake up I was in a lot of pain especially in my back. I spent the whole day laying on the couch using my heated blanket as a giant heating pad. The first time around I could not move all day, after the second infusion I did manage to leave my house for a potluck for a couple hours but that was about it.
Day 4 and Beyond
After both infusions day 4 seemed to be the turning point of getting stronger instead of weaker. Although I would say after the second one it has definitely a been slower recovery. After the first infusion I actually managed to go apple picking on day 4 but after the second I was still on my couch on day 4. I am now over a week out on the second one and feel like I am getting back to my baseline which is good but hopefully with the Rituxan on board I will start improving really soon!
Infusion Day
Both infusions were scheduled for 8AM since this medication takes a pretty long time to infuse and if there are any reactions it takes even longer so I was the first person at the infusion center. The infusion center is the same one I used to go to for IV fluids before I got my port 2 years ago (although it has since moved from a building across the street to inside the hospital) so I knew a good amount of the nurses and it was nice to catch up. One of the new nurses I knew as well because she was an RA in my building freshman year, small world.
For the first infusion my port was already accessed but for the second infusion they had to access it when I arrived. During the first infusion I was also able to get my monthly blood tests pulled off my port which was nice because the outpatient lab refuse to use the port (even though it is already accessed) and complain about my veins. After he port and labs were dealt with they started 125 mg of IV methylprednisone (steroids) followed by 50 mg of IV benadryl and I had to take oral tylenol. These are what is called premeds which help prevent me from reacting to the Rituxan. By the time all the premeds are in my system and the Rituxan is actually started I have already been at the infusion center for about an hour.
I am also super sleep at this point from the IV benadryl but I am not good at sleeping in the infusion chair so I am in an out of consciousness. It was a little frustrating because I couldn't really do anything productive or even follow a movie. At least when my sister came around lunch time I could hold a conversation with her. For whatever reason that seemed to take less energy than even watching a movie.
The Rituxan is started at a really slow rate and they up it every half hour. For the second infusion they start at a slightly higher rate if you have no problems, which lucky I did not. So I finished the first infusion about 1:30 and the second one at about 12:30.
After I went home that day I felt the affects of the IV benadryl and pretty much slept on the couch the rest of the day both times. I was also pretty weak an would get a bit of a head rush every time I tried to stand up.
The Day After
The day after the infusions the benadryl had worn off but I was really starting to feel the effects of the steroids. I was kind of like an energizer bunny on the day after each infusion. After the first one I took advantage of it to cook for Rosh HaShannah and the second time around I got a head on some school work and appointments.
Day 2 Post Infusion
This was the day I crashed about mid day I went from feeling the steroids to what I am guessing was more the side effects of the Rituxan that the steroids were covering up. There was a full body weakness and exhaustion but my mind was still a bit wired so it made it tough to actually sleep or anything. This day after the fist infusion happened to also be the first day of Rosh HaShannah so I pushed through and went to services for an hour and a half and had people over afterwards. I really paid for that on day 3. The second time around I seemed to be weaker on this day but that may have just been me actually listening to my body instead of trying to celebrate a major holiday.
Day 3 Post Infusion
This seemed to be the worst day most times although it was way worse the first time around and I totally contribute that to overdoing it day 2. Day 3 I had trouble waking up, sleeping till about 11 am which is really abnormal for me. When I did wake up I was in a lot of pain especially in my back. I spent the whole day laying on the couch using my heated blanket as a giant heating pad. The first time around I could not move all day, after the second infusion I did manage to leave my house for a potluck for a couple hours but that was about it.
Day 4 and Beyond
After both infusions day 4 seemed to be the turning point of getting stronger instead of weaker. Although I would say after the second one it has definitely a been slower recovery. After the first infusion I actually managed to go apple picking on day 4 but after the second I was still on my couch on day 4. I am now over a week out on the second one and feel like I am getting back to my baseline which is good but hopefully with the Rituxan on board I will start improving really soon!
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