My First Rituxan Infusion

Hi Group, my first post as a new GPA patient. I've appreciated the many posts I have reviewed and all the sharing that takes place in this community, thank you!

It took almost a year to determine the source of horrible daily headaches, finally getting the GPA diagnosis in May. Very bad sinus involvement and damage, with septum mostly gone. I've been on 60mg of Prednisone daily for the last three weeks while waiting for the Rituxan to get approved by insurance. Next Monday I finally begin the 4 weekly infusions. Feeling increasingly nervous, but know it simply has to be done because the alternative to the treatment is unacceptable. Hopeful that the treatments are able to reverse the sinus growths to find a pain free life, but fearful of getting my hopes up too high.

Cheers,
Alan

Hi Alan,

Here's hoping your infusions are non-events!!

I just finished my 4 infusions on Friday. No side effects. I actually enjoy them.


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Thanks for the messages and encouragement. Enjoy them was a completely unanticipated perspective to hear! It's certainly a perspective that can only help you.

Welcome to the forum, Alan.
I understand how excited you must be. I was too.
R-Day usually works like that: they will check you first (blood pressure, temp, blood tests if needed etc).
Then they will insert a needle with line. It shouldn't be aching after it is inside. If it is, then it's not right where it should be. Tell them and ask for another try.
Then you will get some pills. In Israel I get phenergan or anti histamin and paracetamol. I think in the US it is benadryl and tylenol.. ?
Then they will start the infusion. First 100mg or 120mg of steroids to prevent an allergic reaction. If you have joints pains you will feel great relief very fast after.
Here, they wait 30min after the steroids IV is done and then they start the rtx infusion. Starting at a very slow rate. Elavating every 30 min while checking your blood pressure every 30 min. Mine become low so I drink a lot and eat some chocolate.
Its going to be a long day. So bring food and something to read. I get a bed so I sleep most of the time.
After its all done you might feel sleepy. Its better to have someone to drive you home.
Prayers for best procedure and results. Please update us.

My experience here in Philadelphia, USA is almost identical to that of Alysia…my joint pain went away almost immediately too…the Dr said that relief was due to the methyl-prednisone drip…I enjoy the drowsiness caused by the benidryl. Both at Penn Presbyterian Hospital and at the Veterans Administration Medical Center we sit in heated reclining chairs.


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I really appreciate the sharing of your experiences and perspective, great stuff! I know the treatment is the only path to moving forward and getting the badly needed relief, so I am anxious to get going.

Best luck with your infusions. They have been un-eventful with no issues for the 16 infusions that I have completed. The Rituximab has been very good controlling my symptoms The benedryl given does normally allow me to take a nice long nap during the infusion.

Same here - Rtx days are not bad at all - but they are long. Our daughter (besides the food and book thing!) likes her own blanket. And a parent to hang out with, although a friend would be even better I'm sure!

Welcome to the forum! I am wish you all the best with your treatments. Please take care of yourself!

Hi Alan,

I hope your infusion went smoothly. I just finished my 4 Rituxan infusions on 6/23/17. I didn't have any significant issues. I was a little nervous on the first one, but after that found the process kind of relaxing--probably because of the Benadryl pre-medication.

Rob

Quote:

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Originally Posted by XnCelt

I just finished my 4 infusions on Friday. No side effects. I actually enjoy them.


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That's good to hear, I get my first infusion on Friday 3/1/2019, hoping mine go so well.

Ken

I get my infusion that same day. Remember to drink plenty of water for a few days before. It helps the needle to go in easier. Also, have a healthy breakfast. If they give you Prednisone in your Rituxan infusion this could cause nausea. So I eat before and take food with me.
Masha