Rituxan Protocols and Successess or Failures

[Lightwarrior]

Light, the 3-day pulse steroids are only if you're having a severe flare in which you need the massive pred to save your life--eg lung hemorrhage, kidney failure. It's hard to know if you should do the 2 infusions a week apart or the 4 infusions. If you're experiencing a bad flare I suggest doing the 4 infusions. Also, if you're on the heavier side like me, there is a sizeable dose difference between the 2 protocols since the 2-dose protocol uses 1,000mg for each while the 4-dose protocol is weight-based.

Before the infusion you should be given benadryl and at least 80 mg solumedrol. Dr Seo gives me 100 mg solumedrol but said he wouldn't give less than 80 to anyone.

Thanks, He ordered the 4 infusion protocol (I am most assuredly on the "heavier" side) Still waiting for Insurance pre-auth. He ordered 100 solumedrol, vistiral (benadryl makes me edgy) and tylenol prior to infusion. I want to hurry up so I can taper this 60mg of pred down. The rheumy told me to do the taper because I could probably do it better than he could. Sometimes I get tired of these docs thinking because it is me that I can manage my own care. And yet......if it wouldn't have been for this forum and your advice I truly believe I would be dead.

[Debbie C]

Good luck with yr infusions,Light. I hope u can lower yr preds soon.I don't see how u do it and still work.I'll keep u in my prayers and hope all goes well for u soon.

[mishb]

Good luck Light.
I hope this see's you through to the end of the year, in regards to your work ...... and hopefully beyond.

I couldn't agree with you more in relation to this forum.......we do have a lot to be thankful about.

Take care and as always .......

[Lightwarrior]

Good luck Light.
I hope this see's you through to the end of the year, in regards to your work ...... and hopefully beyond.

I couldn't agree with you more in relation to this forum.......we do have a lot to be thankful about.

Take care and as always .......

Thank you all for your warm wishes and prayers, I truly feel the warmth. I have authorization now so I will get my first infusion this Thursday (day after tomorrow). I feel like I have been drug through the mud and left on the side of the road. (I know, I'm a bit of a drama queen ) i am hoping that I jump up after the infusion, do cartwheels to my car while singing the sound of music. I am broken hearted that I will not be able to get the infusion on Saturday. I had to let go of the notion that it is all about me. This will cost me 8 maybe 16 valuable hours needed at the end though. I need to give up my pity party and be grateful that I get to try a treatment that might put me in remission, perhaps even drug free. Looking at the problem through those lenses makes me pretty ungrateful. So........... I am thankful for the chance to get the infusion even though it may cost me some hours.

MOST of all I am thankful for all of you.

[mishb]

You are definately not a drama queen.........you are the light warrior

I so wish I can be there.....not just for you.......but to see the cartwheels whilst the joyous sound of the hills are alive, are being sung.
If I was capable of doing a cartwheel for, or with you, I would .........but unfortunately, cartwheels escaped my childhood achievements.

Good luck........ and so what if you miss some hours........you are going to have this treatment and be a new woman.

[Lightwarrior]

You are definately not a drama queen.........you are the light warrior

I so wish I can be there.....not just for you.......but to see the cartwheels whilst the joyous sound of the hills are alive, are being sung.
If I was capable of doing a cartwheel for, or with you, I would .........but unfortunately, cartwheels escaped my childhood achievements.

Good luck........ and so what if you miss some hours........you are going to have this treatment and be a new woman.

Awwwwwwww....I have happy tears running down my face. I love our group

[RudiK]

Good luck, Light, and all the best. I hope and pray that the treatment works for you and get you back into remission.
Rudi K.

[Sangye]

Gah! I'm just seeing this. I hope it went well for you, Light.

[KathyB]

I've been off a few days, too, Light! How did it go? Were the "hills alive with the sound of music?" Were "edelweiss" in a vase on your table? Were your "favorite things" floating through your mind during the infusion? Were you "16 going on 17" while you were dreaming? Did an absurd little bird pop out to say "cuckoo?" Did you "climb every mountain" to finish strong and get home?! (If you hadn't noticed, the Sound of Music is my all-time absolute favorite movie!!) Seriously, hope you did well and are back on the forum soon sharing your positive experience!

KB

[blessed2bamommy]

Just now reading this thread. I hope your infusion was trouble free and you are feeling good.

My daughter had the 3 pulse and then Rituximab. It was a do or die situation. She was very, very sick. Unfortunately she did have a bad reaction. Her blood pressure shot up and she ended up seizing and landed in PICU in an induced coma. Scary times. I was home with a newborn and my husband was at hospital with her. She's much better now though still has a long road ahead of her. They said she developed PRES (Posterior reversible encephalopathy syndrome). Honestly can't say if it was the Rituximab that did it or the Cytoxan. She had both and right now I can't remember which one she had the night of seizures.