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seashells
04-03-2015, 09:44 AM
I go tomorrow for my first infusion. I hate iv's! Kinda nervous cause I don't really know what to expect. They said it would take 6 hours. Can anybody give me a heads up on what to expect?

Pete
04-03-2015, 10:00 AM
Hi Seashells!

If everything goes as expected, the infusion will be a non-event. Before they start the rituxin, you'll be given an IV steroid (probably solumedrol) and an antihistamine. They'll use the same needle for everything, so you'll only get stuck once. They'll wait 30-45 minutes after the steroid before beginning rtx. They will start that very slowly. If you tolerate it well, they'll gradually increase the rate.

If you have an allergic reaction, they may slow or stop. They may give you more drugs to stop the reaction. You probably won't have a problem.

Rtx generally takes several weeks to take full effect, so don't expect to feel dramatically better overnight.

whatthewhat
04-03-2015, 10:16 AM
Hey, I'm glad you're posting, and that you know you're not alone. The first Rtx our daughter had I was super nervous, but glad there was a medicine more targeted for what needed targeting. Anyway. To answer, here is our experience. Our daughter was 14 and had just been diagnosed when she had her first dose. They gave her other meds first through the i.v., like Predisone and Benedryl. When they began the actual Rtx the i.v. had been going on awhile. She developed a very bad headache, and so they stopped the Rtx for awhile and gave her some more Benedryl, I think. After awhile they started the Rtx bag again but this time it went even slower. After the bag was done they ran some saline theu the i.v. I think. The 2, 3, and 4th times she had it was in an outpatient setting. Her Rtx is run very slowly, so all told we are there on Rtx days anywhere from 12 hours (Rtx #2) to 7 hours (Rtx #4). We take a lot of things to do, although there are DVD players & a tv & games where she gets infusions. We take a lot of snacks, although at one of the infusions places they bring her meals as if she were a patient. She can go the bathroom, but it's a hassle. The Benedryl makes people sleepy, from what I hear, but she fights the sleep. She gets drowsy for sure for part of it. She also gets cold during part of it, so she wears comfortable layers and brings a favorite blanket. In the outpatient infusion centers they keep her around a little while after the bags are all done so that they can make sure nothing adverse is happening. After that we are on our way, and she has had no side effects following the infusions. She has been given two sets of two infusions. I hope this helps. We really think RTX is a great drug.

whatthewhat
04-03-2015, 10:22 AM
Oh, also, our daughter hates needles too...but after two years of Wegener's I will say that this morning she actually yawned, and laughed, during this morning's blood draw. The I.v.s have been hard, but she has gotten used to them too, and handles the i.v. Poles pretty well now. I guess I'm saying - hang in there, I've seen it get easier for someone. :hug1:

im so blessed
04-03-2015, 12:01 PM
I will be thinking about you seashells! Im anxious to see what it does for your stenosis as i am also now planning to do rituxan in june for mine. You can do it!!!

mishb
04-03-2015, 11:24 PM
The best of luck Seashells. I'm sure it will be fine.

Think happy thoughts

annekat
04-04-2015, 04:13 AM
Same from me, wishing you the best experience possible! I'm sure it will be fine, and it seems likely it will help your stenosis. :thumbup:

seashells
04-04-2015, 04:28 AM
Getting infusion now. Had reaction so taking a break. Got more benedryl. That was kinda scary.

Pete
04-04-2015, 04:40 AM
Getting infusion now. Had reaction so taking a break. Got more benedryl. That was kinda scary.

Hang in there!!

smith
04-04-2015, 04:49 AM
Good luck today I've had WG with renal involvement since 2002. I annually get the Rtx treatment to avoid any flares. I've never had any reactions to the treatments and sometimes felt tired afterwards but felt back to normal by the following day. Hope it goes better - for me it was best to relax and even sleep if possible.

rebekah
04-04-2015, 05:40 AM
Sorry to hear you had a reaction. I hope the additional Benadryl helps and it goes smoothly from here on out.