Starting Rituxan this week..... What should I be aware of?

[Shane]

Hi,

I am newly diagnosed with Wegeners and am starting Rituxan this week. I have read about the side effects and am wondering if anyone has any tips on what to be aware of. This is all new and a little worriesome and just looking for some advice. Thanks!

[annekat]

Welcome, Shane,

I don't take Rituxan so can't help you there but know that many others on here do, and they will respond. You've come to the right place. We all remember the newness and anxiety after diagnosis, and everyone's story is a little different yet similar to that of others. For most of us, things have gotten much better with treatment. We'd be glad to hear more about your symptoms, feelings, questions, and anything else you want to talk about. Also, explore the different categories of posts, like "Medications", where you will get some answers, and use the search function, too. But it is always nice to get fresh insights from current posts.

[Dryhill]

Shane, welcome to the forum and for becomming a weggy!

I have had two infusions of rtx and experianced no problems whatsoever, yet a lady who was having an infusion at the same time as me experianced an irritation in her throat, so they slowed down her infusion. I must admit that I was not at all bothered about the treatment until they realised that I had not signed some disclaimer form, a senior consultanat was called down and he went through all the things that could happen to me. That was ok by me until he he told me I could have a heart attack then he said "Oh but don't worry they have the crash cart standing by" as he pointed to it - he needs to improve his bedside manner!

The infusion takes about six hours so I took my favourite book and a magazine to read plus a crossword puzzle book and a dvd to watch (the hospital has a portable dvd player and head phones).

Jim

[AmyA]

I did 4 infusions in July of last year a month after dx and I was terrified. It really wasn't that bad for me. They gave me a dose of Benadryl when starting the infusion and within the first hour I was asleep. I also took a book with me for when I woke up and time seemed to go by pretty quickly. I would suggest to take a comfortable pillow and snacks because it does take a long time. Good luck and welcome to the club!

[Sangye]

Hi Shane, welcome. I imagine you've already begun rtx this week-- I've gotten behind on posts and am just catching up!

Most people seem to tolerate rtx just fine, experiencing fatigue the day of treatment due to the Benadryl, and maybe the next day. In a very small number of people rtx causes extreme weakness persisting for weeks. I'm one of those with the uncommon side effect. I hope you do well with it and it works to get you into a solid remission.

[Davey_From_NC]

I've had two of those infusions. No reactions whatsoever. Unfortunately, it didn't do anything for me - they were trying to calm down the vasculitis in my left eye, but it didn't help, and I lost 80% of the vision in that eye anyway.

I've never been drunk off of Benadryl - but I felt it hit my veigns and BOOM - I was innebriated. My wife couldn't stop laughing!

Hope everything goes / went well, and I hope that it has helped you!

[KathyB]

Hi Shane -- welcome to our forum! I've had two rounds of Rituxan. The first was upon diagnosis & the second was six months later. The first was 4x (once a week) and the second was 2x (two week interval). I'm happily one of those folks who had no side effects other than being tired, probably due to the Benadryl. They also gave me a couple of Tylenol. The first treatments were 4-5 hours. The 2nd were closer to 6 hours. The techs will need to make sure you are tolerating the dosage by taking your blood pressure, etc. every 30 minutes. Like others suggest, bring something to do -- iPad, book, puzzles, etc. I had a TV available in the hospital room and slept a bit, too! Good luck! Rituxan has kept WG at bay for me!

KB:cool:

[carriej22]

Hi There,

I have done 4 infusions of rituxan, the worst part is how long it takes! I had a reaction during my first infusion (severe itchy throat.. like coughing fits, etc) and they slowed it down. It was more annoying than anything.

First infusion took 7 hours... Longest day of my life.

Then it went faster, by my last infusion I think I was down to 3.5 hours.

I found it made me flush and sweat... And I always was super sleepy, but I think that was the benedryl they gave me.. Other than that it didn't make me sick or anything. Just bone tired. I also find I just didn't feel right *dizzy* for a few days, however I also received solumedrol (I have no idea how to spell this) so it could have been that too...

[Shane]

Hi everyone,

Thank you all for your posts. My first experience was a scary one as I had a major reaction to the Rituxan. Turns out the infusion center didn't dilute the Rituxan properly. Luckily my Dr. decided to change centers and now I am at a place that has experience with Rituxan. I have done 2 infusions now and have had no problems at all! Such a relief.

Carrie, Yes that first one was the longest day of my life. Because of the previous reaction they started me at 25ml/hr! I was there for 10 hours.

Thank you again to everyone for your posts. It really makes navigating this disease more manageable.

[Sangye]

I'm glad it's going well for you Shane. Good to be at an infusion center that you trust.

[Meredith]

Just got finished with my 2nd round of Rituxan (first time 4 times (once a week), the second time 2 times (once a week). No problem taking it, some brusing the first round. A little dizzy when standing up from sleeping for a few weeks after the first round. Since my doctor did not know how long my remission would be he waited so I was actually out of remission before the 2nd round. He has me on prednisone until my tests show I am completely in remission again. He told me it can take up to 2 months before total remission after you take rituxan. He will now give it to me every 9 months so I do not go out of remission.