RITUXIN and DEXAMETHASONE for 1st Tx for 13 y.o?

1st time posting...My son is 13 yo this weekend. He was diagnosed with ITP last May 2011 after testing positive for Epstein Barre virus. Platelets were as low as 9k. I took the "Watch and Wait" approach and his count rose to 154K by December 2011. Counts dropped to 17k with lots of bruising and petechaie during late February and March 2012 (maybe after a stomach bug) and now sit at 13K. I took him for a 2nd opinion in NYC and the recommended tx by a well known hemo MD was Rituxin and Dexamethasone.

Seems like a very agressive tx but there also seesm to be some reseacrh indications that this is the latest combo drug and could have longer lasting effects than other treatments. I see there are at least 2 Clinical Trials still currently recruiting for this approach with adults.

I am concerned over the potential side effects. My son is overweight and has low muscle tone since birth but is relatively healthy otherwise. He has received no tx to date and I am concerned as to what decision to make. 1st MD leans towards IViG.

Anyone with any 1st hand info on Rituxin-Dexamethasone would be greatly appreciated as I am ready to make a decision this coming week. Thanks so much.

It's a hard decision and one I wouldn't presume to step on, but I have noticed that one factor that some parents cite in their decision to treat is the activity level of their children. When the kids are athletic there is more concern about injuries leading to bleeding and changes in the kids' lifestyle if they maintain low counts.
Erica

Hi

To treat or not to treat is a decision we are just making for our 13 year old son after 3 years of ITP. He's done watch and wait for almost all that time with no problems - although his counts are generally under 15, he has few symptoms other than bruising and petechiae and the occasional nosebleed. He's still played sport during all this time, but with some restrictions.

The only reason we are going down the treatment road now is that my son can't live with the activity restrictions and as he grows more independent, we find them impossible to enforce - he's a naturally active risk taker, and we keep catching him doing things that would be dangerous for someone without ITP! :ohmy: His consultant says that he has several teenage boys on his case list where he continues to recommend no treatment because they are not particularly active kids and they don't have bleeding problems.

I have to say that I am still not 100% convinced that treatment is the right thing to do for my son, but if we go down this route, rituximab would have been our first choice. Unfortunately my son had an IVIg treatment in January that has left him really traumatised about drips and he refuses to consider anything that involves one. Rituximab seemed like a good bet to me because it actually offers the chance of a cure or long remission as opposed to a short term fix or an ongoing patch. I think in your position, I might be tempted to wait a few more months to see if his count started going up again by itself, but I don't know your son. his lifestyle, his symptoms etc.

Good luck with your decision and with the treatment if you decide to go down that road. I'd be interested to hear how it works out.

Ali

Thanks Erica and Ali...Fortunately my son has not had any episodes of bleeding but has had major bruises and petechaie. His energy level is low at times but he is rocking great grades at school, good social life at school. He is not an athletic boy becuase of his low muscle tone since birth so there is less worries as he does not play organized sports, Doctor has recommended he doesn't even ride his bike for fear of falling however and I think this type of restriction wears on him, sort of like the boy in the bubble syndrome.

I am certainly on the fence right now as to how to proceed. One day I am ready to treat him, next day I want to wait. I certainly have a few more questins for the MD, mostly concerning dosage if we were to go the Rituxin-Dexamehtasone route as there appears to be some emerging discussions about if a lesser dosage would still be as effective as the outocmes to date.

Thanks for the feedback, glad I found this site, makes it a little easier to take in knowing there is support out there and my son and I are not alone. I will continue to post any updates but in the meantime welcome all posts and suggestions, etc. Thanks everyone.

John - there are some studies that show that the combination of Rituxan and Dex can produce a longer remission than just using Rituxan alone. It might be the best shot at this point if you decide to treat.

Good luck!

thanks Sandi...that is pretty much the conclusion I have come to as well. Took my son to see Dr B in NYC, a well known hemo MD and this is the course of action he has recommended. Unfortuanelty he is out of the office for 2 weeks as of yesterday and my son is scheduled for a school trip to Washington DC 2nd week of May so I may just hold off until he gets back. He currently is at 13K, has minimal bruising, min-moderate petechaie and has never had any wet bleeding. I would worry however, it being a class trip away from me for 3 days. I literally pray every day to make the right decisions. Thanks so much for the support!

I know of Dr. B. He is one of the best!

I know how hard it is to make the decisions. Just go with what makes sense and don't second guess yourself.

When I've read the studies on dexamethasone and rituximab, I've always been surprised that they are saying that the combination treatment is better than dexa alone. I have not read anything that compares the combination to rituximab alone and I don't understand why they don't address that. Of course they may well have done and I've missed it.

Well my sons count was 3K a few weeks ago at an ER visit after c/o stomach pain. We did an IViG treatmetn, count up to 153K for about 10 days and back to 5K. That being said we just finished our 1st round of Rituxinn and Dexamethasone today, he tolerated it well. Will run an update as we move along.

**I would definetly recommend the Tylenol, Benadryl and hydration route that many parents have recommended when doing treatments. My son tolerated the IViG and todays tx without any real complications following this regime**

John - glad you stopped in to let us know. Good luck - I hope it works for him!

I think Rituxan works better with Dex because it might get the counts up faster instead of waiting the full 4 to 12 weeks for Rituxan to kick in. Dex probably gives a huge boost (if a person is responsive) until Rituxan takes over. I can see how the two would work well together. Dex probably also helps with any Rituxan side effects.