We'll, had my labs and tests done and finally might be able to schedule my Rituxan again after 5-6 years. I remember some of my pre-meds that I had before. I know my doc double's my infusion time. I think I was there 8 hours last time. I also remember getting a benedryl tablet, sol-medrol , tylenol and my doc also runs saline throughout the entire infusion for extra hydration. For those who have had it, can you tell me what protocol was used?
thanks
Gursie
Gurs .....
The first Rituximab infusion I had I was given pre meds of 125 mg Solu-Medro IV, 50 mg Benadryl orally, and Tylenol 650 mg orally. I had a reaction after about 2 hours and had to have additional IV Solu Cortef and IV Benadry.
Because of the reaction, the next time I had my infusion my doctor ordered pre-meds of 150 mg Solu-Medrol IV, 50 mg of IV Benadryl, and Tylenol 650 mg oral. I still had a reaction but it was not as bad as the first time around.
Now, every time I get Rituxan infusions I get pre-meds of 150 mg Solu Medrol IV, 50 mg of Benadryl IV, and Tylenol 650 mg. Then, about 2 hours into the infusion I get another 25 mg IV Benadryl and 100 mg IV Solu-Cortef.
My Rheumatologist feels that the IV Benadryl (instead of orall Benadryl) works better to prevent the reactions. I agree. I do better with all of the pre-medications and by getting extra doses of IV Benadryl and IV Solu-Cortef before I have the reactions instead of waiting for me to have the reactions.
Jasper- How long does it take to recover from the infusion process and return to work after going through the Rituxan infusion procedure?
Thanks so much Jasper! Im trying to remember everything. I only remember everytime they would try to speed up the infusion rate, I felt so sick...I guess that is why it took 8 hours. I didnt care...as long as it seem to minimize the size effects. I felt so toxic though getting this.
I also remember the side effects hit me hard after 2 days, guessing the steriods wore off, so I have extra medrol on hand as well.
Not looking forward to this again, but no other options. My neuro symptoms are getting worse day by day, as well as my joint pain.
I do remember it helped with my fatigue, hair loss and neuro issues somewhat, so Im hoping for a good outcome.
Gursie
Gurs ..... The last 4 infusions I have had I have needed the initial pre-meds and then two more sets of IV Steroids and IV Benadryl. So I have the pre-meds of IV Solu-medro 150 mg and IV Benadryl 50 mg. Then I get an additional 25 mg IV Benadryl and 100 mg IV Solu-Cortef.l again about 2 hours later. Then I get another set of 25 mg IV Benadryl and 100 mg IV Solu-Cortef about 2 hours after that.
In addition, my infusions were taking 9 hours for the infusions with the total time being 10 hours in the infusion center. They had to run my infusion very slowly. The last two times they were able to run the infusions a little faster and the infusions took about 7 hours (actual infusion time). I was in the infusion center about 8 hours. They were able to get my infusion rate up to 200 cc per hour the last time. I am sure that is due to the fact that my Rheumatologist was being proactive with the steroids and Benadryl administration and was not waiting for a reaction.
I wish you luck with your infusion Gurs. I hope you get as much benefit as I have gotten. I feel vastly improved with the Rituximab infusions. They have given me back my life. Not perfect and not back to pre-Sjogren's life, but vastly improved. So I hope your infusions go well and you receive very good benefit from them. I don't mind the infusion reactions because I get such great benefit from Rituximab.
Sharon ..... Recovery time from the infusions is totally individual.
I was in very bad shape prior to my infusions, very fatigued and no energy. I was getting nothing accomplished and everything was a major effort. The infusions added some problems and I felt like I had been hit with a Mack truck for a few days after the first set of infusions. I also had a lot of edema following the first 2 infusions and it took a week each time to clear that up. I started getting some energy after about 4-5 weeks.
Now when I get the infusions, my starting point (fatigue severity and energy level) is never as bad as it was prior to the first 2 infusions so it does not take me as long to get back to feeling better. Still, it's about a month before I am feeling halfway decent and it is at least 6 weeks before I get back to feeling even better. I am 6 weeks out from my 1st infusion of the last set and I am just now starting to be able to accomplish several things in one day. I was able to wash my floors about a week ago (kitchen, dining room, living room - all small condo rooms). I will keep improving for another month or so. Then I will be okay until the last month before I am due for another infusions. Then some symptoms will gradually start to return, albeit at a reduced level.
I am not working. I had to retire early due to fatigue and other Sjogren's related medical problems. I am not sure I could work now even with the Rituximab. I am a registered nurse and I worked in critical care. There is no way I could do that even when I am feeling my best on Rituximab. I possibly could work part time at a desk job in between the infusions, but I would need at least 4-6 weeks off every time I had the infusions.
I think some people may recover from the infusions faster than I recover, but I don't know for sure. Some people don't have infusion reactions like I do. Plus, everyone responds to the infusions at a different rate.
Thanks again Jasper for all the info...You sound like me. I guess we are extremely sensitive. I seem to have reactions to everything these days. I just remember the slower the better. I also felt sick after for about 2 weeks, then things settled down some. The second infusion after 2 weeks went much easier. The dryness from all the medications scare me. No matter how much water I drink, Im a prune. My doc orders the saline IV throughout the entire infusion, but Im allergic to the preservatives in the saline, so I have to see if the infusion center can order it for me.
Its not an easy thing to go through by any means for those who have never had it, but at this point, my quality of life is basically gone, and Im pretty much in bed feeling sick anyways! HA!
Gursie
I'm so glad Rituximab helps you girls
but it's such a shame there are infusion reactions like the ones you both described.
How come Rituximab isn't available in injection form like any of the other biologicals?