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thedudos1109
01-19-2016, 07:35 AM
Hello! Anyone here have Rituxan infusions? I'm going for my first one Thursday and I don't know what to expect. How am I going to feel afterward? I have an 11 month old daughter, should I set up child care for her for the day after? I have so many questions.

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Pete
01-19-2016, 09:19 AM
For most people, rituxin infusions have minimal side effects. I was a little tired the day after mine (6 in all), but not enough to interfere with anything I had to do.

Your first one will take the longest - five hours or so. You'll be given an IV steroid (usually solu medrol) and an antihistamine before they start rtx. Once they start rtx, they will flow it very slowly. If everything goes well, they'll gradually increase the flow rate. They check your vitals every hour.

Some people have allergic reactions. In such cases, they stop rtx, treat the reaction, and either start again at an even slower rate or abandon the treatment.

Take something to read, some snacks, and some water with you. The infusion center I go to at Ohio State is pleasant. They have personal TVs and free wifi. I take my headphones and stream music through my phone.

You may want to have childcare on standby until you're sure there aren't going to be any issues.

Hope this helps. Good luck.

Middlesista
01-19-2016, 09:33 AM
Completed 4th Rituxin infusion in December. They watch you very carefully for any reactions so be sure to let the nurses know. It takes awhile, mine took about 5 hours I think the first time since I developed a little itch and they slowed things down. They premedicate with solumedrol and Benadryl -so you will be tired - don't drive yourself. I ended up sleeping which was good since prednisone has recked havoc on sleep patterns . I have read where some folks bring snacks but the infusion center passed out snacks where I was. I was very tired that day and the next so you might want some help at home so you can rest but everyone is different

Make sure you are well hydrated so they will be able to find a vein easily - that was my mistake -I did not do this and they had a hard time getting the IV in

if you have any other questions do not hesitate to ask. There are many folks here that have had much more experience with Rituxin than I have and I have read that many folks do well with it.

Best wishes and may you find a remission and good health in your near future

debra
01-19-2016, 11:08 AM
1109, hi? Never know what to call people, in these cases... Good luck, and I go with Pete, on having a plan for you're children/ child... Alysia, just had hers, so I'm sure she will swing by... Deb.

Birdie
01-19-2016, 11:15 AM
I have so many questions.

This group exists to answer questions... so ask them all.

Ask again if you don't get the answer you needed, or if you don't understand any of the answers.

me2
01-19-2016, 11:42 AM
For me the tiredness doesn't set in until the third day. The second day I am still wound up from the large dose of solumedrol. So, don't let how you feel the second day make you think you will feel that way the rest of the week. I think I would have a back up plan in place for having child care help the next week but you might not need it. Everyone does a little different with
the infusions.
I was scared the first time I went for one but now it is not really a big deal. The infusion clinic allows me to drive myself home. A two hour drive.

doodles2008
01-20-2016, 03:02 PM
Yes, no side effects from Rituxin just ended 6 months of treatment by infusion!! Feeling great!! Praying for full remission!! Best of luck to you!!


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itzymendz
01-20-2016, 08:06 PM
I had my first infusion inpatient at the hospital just this past December it ran a little over 10 hours. My second infusion took 7 and a half hours it wasn't too bad the Los Angeles County Hospital (General Hospital) provides recliners, WiFi, personal TV's, blankets and they also give out lunch as well as snacks. Try not to stress to much I was really nervous and ended up sleeping the last couple of hours. Good luck.

MaxD
01-21-2016, 06:22 AM
I too was anxious before my first infusion. The double whammy came from the solumedrol which made me alert while the benadryl made me sleepy. So the rest of the day was pretty much shot. Fine the next day. As for the Rituxan, I had no noticeable side effects. At the end of the first infusion they gave me a hot pack to put on my arm at the injection site as it felt a little cold, and I felt a little sniffly at the back of my nose (nasopharynx) - very minor indeed. Bring some music along and a book to read (in case the solumedrol/benadryl will let you concentrate), and something to munch. Good luck tomorrow!

tom t
01-21-2016, 10:47 AM
Hello! Anyone here have Rituxan infusions? I'm going for my first one Thursday and I don't know what to expect. How am I going to feel afterward? I have an 11 month old daughter, should I set up child care for her for the day after? I have so many questions.

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I was very leery when I had my first infusion, but it had been years of Prenesone and a year of chemo ( very nasty) before that. I found the Rituxan ( which had not yet been Okay-ed for GPA) to be a breeze. I had no adverse reactions, no side effects and just felt weak from sitting all day for the infusion. I had 8 more over a year or so and now have not had any treatment of any kind for 2 1/2 years. It seems for me, that it was the only thing that worked for me.
I had a huge exposure to mold recently ( no evidence that it causes GPA ) and though all of my tests are negative, I've had sinus problems now for 2 months. ????

Green Grass & High Tides
01-21-2016, 02:02 PM
Good Luck tomorrow. Take it one step at a time. There's a real good chance it'll help. I needed some assistance with my kids on the day of rtx infusion. It made me pretty sick but I was very sick already. Many people do well with it. Even being real sick, I was able to help the kids if nobody else was around.
Sending best wishes,
Tom

thedudos1109
01-21-2016, 04:54 PM
Thank you everybody for your responses, they've been very helpful! I'm so excited and nervous at the same time. I'm looking forward to being back in remission and feeling well enough to being a good mommy to my daughter. I'll keep you guys updated. Thanks for everything!

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thedudos1109
01-22-2016, 04:06 PM
Got my infusion today - very long day. I'm very tired so this will be short for now. My only complaint for the moment is I'm having bad bilateral flank pain. Is this normal? Thanks.

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debra
01-22-2016, 06:44 PM
1109?, hi... Just wanted to say, hope it all worked out, and with you're kids, ect. Don't know about the flank pain, I'm sure others will chime in, but do know from people here tiredness is normal and may even last for a week, or two? Again, the members that have experience with rtx, I'm sure will see this... Good luck... And I hope the pain turns out to be nothing... Debra...

Green Grass & High Tides
01-23-2016, 03:33 AM
I would reread the listed side effects for rtx. Wegs can jump a little after infusions for some people. It always does for me.

My back pain increased. Each rtx infusion I had triggered some sort of autoimmune response. It would be worse for the first three to four weeks then i was mostly just run down for about 4 months. It did increase gi bleeding which is a listed side effect.

Back pain and neuritis came and went. I could have taken more prednisone but refused to since i had adverse glucocorticoid reaction. So i would've had to take benzos and sedatives with pred. Which ultimately i had to take anyway since i got much worse.

I have that balanced now but after Rtx infusions i probably should have stayed on a therapeutic dose of pred, like 40mg but instead took a subtherapeutic dose of 10mg which helps and hurts in my case. It reduced some wegs symptoms but aggravates the HPA axis which in turn triggers autoimmune disorders. Rtx wipes out bcells and the HPA axis reproduces healthy bcells, hopefully. But leaving that system in disarray probably was counterproductive to replication of healthy, non self attacking bcells, for me.

TMI...

Tom

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mordeco
01-26-2016, 02:26 PM
Had my 6th one today. 4 in the summer 1 week apart and now 2 doses 2 weeks apart. As soon as the benadryl hit I was knocked out for 4 hours. Couldn't open my eyes. Afterwards was ok. Drove home myself over an hour. It was my birthday today and it was a little depressing spending the day hooked up. But doing fine and hoping for the best.

debra
01-26-2016, 04:16 PM
Mordeco, happy birthday! Sorry, I'm just seeing this now... I hope you start feeling better... Stinks to have to spend you're birthday like this, but next year's will be great! Good luck, and nice meeting you, I'm Deb, I'm a little nuts, but happy to say, there's one here that makes me look totally normal... Debra...

mordeco
01-27-2016, 01:49 AM
Mordeco, happy birthday! Sorry, I'm just seeing this now... I hope you start feeling better... Stinks to have to spend you're birthday like this, but next year's will be great! Good luck, and nice meeting you, I'm Deb, I'm a little nuts, but happy to say, there's one here that makes me look totally normal... Debra...

Thank you for your warm words. what does "there's one here that makes me look totally normal" mean?

Pete
01-27-2016, 03:10 AM
Thank you for your warm words. what does "there's one here that makes me look totally normal" mean?

Debra's little dig at Birdie...

debra
01-27-2016, 03:43 AM
Mordeco, I like to kid, is all... Pete, what up, Pete? I neeeeever, mentioned His name! Funny, you would assume this, though... Pete, how goes it? Deb...

mordeco
01-27-2016, 04:05 AM
I also like to. That's the way to make it thru the rough days.....

debra
01-27-2016, 04:51 AM
Mordeco, true that! Have to laugh, otherwise I'd lose my mind. Well that's up for debate, cause most I'm sure think I've gone beyond this point... Mordeco, where are you from? Would like to hear about you, when you're up to it? Deb...

Birdie
01-27-2016, 07:25 AM
Debra's little dig at Birdie...

Dig? Or bait?

debra
01-27-2016, 08:56 AM
Haha... True, that too, Birdie... Which one is it... La, la, la... Deb...