Another family considering Rituxan - ugh.

Hi --

Rituxan on my mind. After a year, and no responses from antiD or any more from Ivig, our hematologist wants our daughter to do Rituxan. We all feel like deers in the headlights: stuck and a bit scared. Would value thoughts from those with experience. Mia used to hover in teens, which we could all live with, including hematologist. Recently more single digits -- 1K (12/19). A bounce after Ivig but 5K on 12/31.

Wondering:
- Mia's had bad reactions to Ivig. Ended back in hospital twice with CT scan and IV's. Does this in any way mean she's more at risk for a bad reaction to Rituxan? (esp as a girl - as females seem to have higher incidence of serum sickness). This is our biggest worry with rituxan. Hematologist and research I've read not very encouraging on this front.

- Is there any treatment we are missing?

- She is struggling psychologically with ITP. Mia hates ITP but also knows she is using it to hang back, opt out of things she could do but doesn't want to (eg. gym, vigorous exercise, etc). We encourage her to take part and esp to work out but it's been a hard go. Hope for a way to get her psychologically back in the game, and physically, if just to be more fit. Also don't want her to miss out on great activities she has planned (an exchange to Canada with middle school in March.)

I know we have to come to our own decision about all this, and there are rarely clear or easy choices with ITP. Still, thoughts from those who've been there with rituxan are appreciated.

Hi,

I'm really sorry about the psychological impact of ITP on your daughter- I can sympathize with that and relate as my daughter seems very sad about this disease.

I am new to this since we have only done IVIG and "watching and waiting," but what are the downsides or side effects of Rituxan?

Hi, thanks for your response. My understanding from research and doctor and this great site, is the responses to Rituxan can vary -- from pretty smooth sailing at one end, to head and body aches, malaise, nausea - to at the worst serum sickness which can be quite dangerous. I think it's not unusual to have some kind of adverse reaction to the first dose -- but often patients can get through that treatment by waiting a bit and upping steroids and benadryl. I've read some people are fine all through; others feel the month of rituxan is awful. No way to predict I guess. Also, doctors seem keen to give all four treatments but I don't think that's always neccy' with ITP - at least from what I've read.

thanks for your response - helpful to me more than you know -- and I really hope you find a good course with Rachel. Sounds like you are on a good track now with your doctor. Prednisone can be helpful we have found in a pinch.

Firkins I wish I could offer you something, but I can't. I know exactly how you feel! 7 months ago Rituxan was suggested and I still haven't decided if I will ever give it a try. I just wanna wish you luck, and hopefully Mia will just go back to a safer number on her own and you won't have to decide ( yeah I do alot of wishful thinking)

Just thought I would share our experience with Rituxan. Brady has had steroids (no response, bad side effects), WinRho (great response, bad side effects), IVIG (great response, really bad side effects) and Rituxan (no response, no side effects). As you know everyone is different but Brady had terrible side effects with IVIG and no side effects at all with Rituxan. He got Rituxan a long time ago - maybe 8 or 9 years ago - and was scheduled to receive the four doses. When we went in for the 4th dose his count hadn't budged at all so the doctor suggested that we just skip the 4th dose. It seemed like the doctor thought Brady's count would have changed by the 4th dose if the RItuxan was going to work, even though many people on here talk about a delayed response.

I know it's a really tough decision and you hate to put the drugs in your child's body but Rituxan was an easy (unfortunately non-effective) treatment for Brady.

Hang in there!

Beth and Crystal Lee,
thanks for your responses -- they are very helpful as we mull this over. Crystal Lee: we are decidely right where you are right now, trying to move through this to some kind of clarity. Beth: I'm sorry Brady had no response to rituxan but glad none of the bad side effects, or any at all. Mia had gotten great responses to ivig until the last try which lasted only a week and was probably due to the steroids given at same time. She also had bad responses twice to the ivig -- scary and very painful for her -- which is what makes us gun shy about rituxan. So Brady's experience is a helpful counter-balance to our fears.

What are you doing, if anything, for Brady now?

Wishing higher platelets for your kids

I just wanted to respond again to the psychological component and the physical fitness. This is something I am very concerned about with my daughter, as she tends to be on the couch potato side of life (especially compared to my two sons. :lol: )

However, the other day she said, "I hate my body," which really concerned me. I struggle with a remitting/flaring pain condition myself, and one thing that saved me was finding a physical outlet like swimming, yoga and pilates that not only gave me endorphins, helped my pain, but also made me feel better psychologically in that my body could accomplish something rather than betray me. I worry about my daughter feeling this betrayal of her body.

Sooo, all of that is to say I am going to encourage swimming again, and try to find safe physical activities. I know your daughter is a little older so she probably has stronger opinions, but it might be so great for her even to take up something safe but physical.

I wish you the best on that- it stinks for them.

When I was a teenager (eons ago) I used to find any possible excuse not to do PE or exercise generally. I don't want to sound cynical, but if ITP wasn't there to blame, your daughters would probably find some other reason for opting out of these things.

I can definitely tell you that a bad response to IVIG does not mean bad side effects from Rituxan. I have seen just as many, if not more, adverse reactions due to IVIG than I have to Rituxan. Most reactions occur during the first infusion, and those can be easily controlled (except for the most severe, which is very rare).

I have had serum sickness from Rituxan, twice. I can tell you that it was a horrible experience, but usually resolves within a few days. Yes, it can be serious, but not normally life-threatening unless the reaction occurs more than once, and that is only if the drug is given again after the initial serum sickness. I went to the ER the first time I had it and was misdiagnosed with a virus. They sent me home with no treatment. The second time when it was properly diagnosed, I was given morphine and steroids before I was sent home. Much better!

Good luck with your decision. When someone responds well, they feel as if they have their life back.

Hi All,
I wanted to check back in first of all to say THANK YOU to everyone who responded. You have no idea how helpful it was as we waded our way through to a decision. So grateful for the good people here, the insights and experience, and the understanding that, in the end, every family/patient, has to come to their own decision.

We are going ahead with Rituxan, probably early next week. Over the past ten days or so, we've read so many articles, talked to people, read stories, and suddenly it just got clear what we needed to do next. Obviously we hope for jaw-dropping results and full remission (hell yeah!) but we are VERY realistic. One day at a time. That's what this disease teaches: living in the uncertainty one day at a time. This is my daughter's illness and I'd do anything in the world to make it mine to bear, not hers, but I can see how despite all the struggle and pain, it's strengthened her too. God knows, it's certainly given mom a run for her money, and I just pray I can use that run to grow a bit in patience and insight.

This said, she DOES struggle emotionally/psychologically from some of the ways ITP has impacted her life generally and her unique self specifically. ALI: I was also always trying to get out of gym, but also loved sports and exercise and was a dare devil. I just hated gym uniforms and Miss O! Mia has become afraid on the on the hand unless she KNOWS her platelets are in a safe zone (say above 30K which is rare) and also knows she sometimes uses ITP to her advantage -- and that just makes her feel crummy about herself. I wish she was jumping off cliffs like Dougie but that just wasn't in the cards for her, ESP after ITP.

Rachel's mom: maybe we should email each other or start another thread on that topic? or just continue here... It's hard to see that kind of knotty psychic pain in Mia around this, on top of all else. She met today for the second time at the hospital with a psychologist who works with kids who have chronic illnesses. Very helpful. I think that doctor helped frame some issues to help Mia, that she can work on with her regular therapist..... It's hard to be 13, in middle school, all of that. ITP just adds another layer......

Best to all and THANK YOU ALL again so much. I'll let you know how the rituxan goes when it happens.
Firkins