Experiences with Rutiximab or Splenectomy

Experiences with Rutiximab or Splenectomy 9 years 7 months ago #39644

locksley
Offline
Posts: 4
Thank you received: 0

My son has had 3 episodes that we are aware of with ITP. 1st at 3 yrs old he went into remission after 6 months. 2nd time at 4yrs old and went into remission after 6 months. This time started at 8 yrs old we are going on a year with no response to any treatments. We've tried IVIG, steroids, and 6MP. Our main reasons for even trying these treatments is our son's want to play football and we won't allow it at lower levels. His platelets have been consistently 5 - 20.

Our doctor is now giving the options of either Rutiximab or Spelenectomy as our options. At the moment we are doing no treatment and going to leave it at no treatment but I wanted to know if anyone has had any experiences with the Rituximab or even a splenectomy. Both have some risks and both are not 100% so it's hard to choose. Especially a surgery that is permanent like that. Would love some opinions. Thank you!

Please Log in or Create an account to join the conversation.

Experiences with Rutiximab or Splenectomy 9 years 7 months ago #39649

alisonp
Offline
Posts: 1052
Thank you received: 119

My 15 year old son tried rituximab last year after nearly 4 years of counts under 20k. It was an easy treatment, although it made him very tired - the doctor said it was the steroids that they gave him with it. It didnt really do much for my son but he is still happy that he tried it. There are other people that its worked well for. We've gone back to not treating which I am happy with for the moment. Like your son, he continues to play sports - basketball, soccer, badminton, table tennis etc. We tried stopping him early on, but concluded that his mental wellbeing was also important. Good luck.
Ali

Please Log in or Create an account to join the conversation.

Experiences with Rutiximab or Splenectomy 9 years 7 months ago #39650

Sandi
Offline
Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
Posts: 12436
Karma: 11
Thank you received: 2375

Hi. I can't tell you what to do, but I can provide you with some information to help you make a decision.

This is a video conducted by one of the top ITP Specialists:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Articles:

bloodjournal.hematologylibrary.org/content/120/5/960.full

bloodjournal.hematologylibrary.org/content/122/21/2310.abstract?sid=0e2b069b-509c-4c60-8472-86e0cdd2d764

www.ncbi.nlm.nih.gov/pmc/articles/PMC3674676/

bloodjournal.hematologylibrary.org/content/104/4/956.full.html

www.ncbi.nlm.nih.gov/pmc/articles/PMC2756197/

Please Log in or Create an account to join the conversation.

Experiences with Rutiximab or Splenectomy 9 years 7 months ago #39917

mazad26 Offline Posts: 5 Thank you received: 0	Sorry, I can't help you with this decision but I just wanted to say that my son has had ITP now for last 5 years. We tried steroids and IVIG early on. The steroids worked temporarily but IVIG did not work at all. He has done fairly well over the years and his counts are consistently between 10-20k. He has had recurrent nosebleeds for a few months now and I am starting to get worried.
	Please Log in or Create an account to join the conversation.

Experiences with Rutiximab or Splenectomy 9 years 4 months ago #41669

tinabug Offline Posts: 1 Thank you received: 0	My 13 year old daughter Gabby has been diagnosed with ITP for a little more than 3 months. We have tried IVIG, ANTI-D, AND DEXAMETHASONE. We were told today that we have 3 options, ritubamax, spleenectomy or to do nothing. All 3 of these options scare me! I think we are leaning towards the spleenectomy. Any suggestions or info would be greatly appreciated. (Please excuse my spelling).
	Please Log in or Create an account to join the conversation.

Experiences with Rutiximab or Splenectomy 9 years 4 months ago #41670

alisonp Offline Posts: 1052 Thank you received: 119	Splenectomy seems way too soon - what happens if you do nothing? This has been a viable plan for my 15 year old son for the last 5 years. His count is nearly always less than 20 but he has a very normal life with few problems. He did try rituximab to no effect but it wasn't a hard treatment either and it works great for some.
	Please Log in or Create an account to join the conversation.

Experiences with Rutiximab or Splenectomy 9 years 4 months ago #41671

Sandi
Offline
Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
Posts: 12436
Karma: 11
Thank you received: 2375