Splenectomy didn't work

My son has had prednisone, IVIG, platelet infusions, three units of whole blood after a 3-day nosebleed, NPLate, and two weeks ago they removed his spleen and an auxiliary spleen. His count only went to 17,000, and now is back to 5000. He doesn't seem to have too many of the petechia and has not had any more nosebleeds. He said his UCSF doctor told him the splenectomy didn't work. So he is on a 4 week course of NPlate. If that doesn't work, what is next for my son, age 30? This whole thing started on June 13 of this year.

I'm sorry to hear that it didn't work. I see that he was on NPlate before the splenectomy, didn't it work? I think you can take NPlate indefinately. And how about Rituxan? Please let us know what happens.

As of today, his count is back up to 30,000! These numbers sure jump around, don't they? He has an appt at UCSF on Wednesday, so we are hoping for similar results from their labs. He has taken Prednisone, IVIG, NPlate, several platelet infusions, and is having NPlate injected weekly again. Hope it is helping. He desperately wants to return to work to take care of his wife and two very young children.

Give it some time: it may take a while for the Nplate to work.

I started in Nplate in December of 2008. It took 8 weeks before Nplate started working for me, with counts as low as zero with all the bleeding and bruising. But then after 8 weeks, my platelet count has been up-and-down, but never below 50,000 with no ITP symptoms or bleeding problems.

best of luck to your son!

Wow! I've had ITP since 2004. My platelets have been as low as 5K. I've been on Prednisone, had two sessions of Rituxan. Although my platelets went up while on the Predisone, I didn't want to be on it a long time. I've been taking Promacta for four days now. If this doesn't work, I'm thinking about the Splenectomy.

Good luck to your son.

Hi
Hang in there and dont give up hope. I was diagnosed with Idiopathic thrombocytopenia purpula in 1994 without a count of 1. After immunogloblin it would go upto 2 or 3 if was really lucky. I had the bruises and the rash and bleeding. After 6 weeks they decided Splenectomy. I was 25 at the time and out it came and was told it would never come back.

18 month later it did return much to my consultants concern and what is more after checking the blood film he found the spleen had regrown. Had that removed. I continued to have ITP at odd periods and for me they were a week in hospital with a five day course of Immunogloblin and Steroids (and a full blood transfusion when I been anaemic at the same time. My system acts very slowely to Steroids but gets there in time.

As far as I know I haven't had ITP for 8 years until this year in August I turned up at A&E not feeling well on a thursday (am extra careful with not having a spleen and had two major illnesses). They did the bloods and a long story short discovered had 10 platelets. After another test they gone upto 37. They contacted my haematologists and an appointment was arranged on the monday. I don't know what the count is because the first one clotted and I got called in before the second one came through.

What next you ask? It will depend on his bleeding. If he isn't bleeding then they will most likely monitor him closely to see if platlets go up in time. If they do they will treat when he shows signs of bleeding - or at least that is what happens for me. I have an annual appointment to give me open ward access. That allows me to turn up at the clinic/ward any time day or night whenever I suspect ITP. I ring first to let them know am on my way.... Things may well be different in USA. But am 43 now. Do the platelets go up in between time or as he always stayed low and always have bleeding issues.

What next, not helpful I know but just take one day at a time:-} Trust the haemo I trust mine and he trusts me:-} I have built up a good working relationship with the team over the 20 years even if my original haemo has retired.

Well, my son's counts have been astronomical the last three weeks! We know he will always have ITP, so he will always have check-ups, but for now we are relieved. His went from 30,000 to 50,000 to 80,000 to 549,000 (not a typo!) to 1.6 million! Last count is 800,000 so they have him taking baby aspirin. Scary to have it go so high, but it seems to be leveling off now. No bleeds or petecheia and he's back to work. After the last 3 counts, they did not give him NPlate again. It must have been the combo of the splenectomy & Nplate. Who knows what next week, month, or year will bring, but we are all glad he is better. He fought off Hodgkins Lymphoma 3 years ago, and apparently the two diseases are not related. Otherwise, he has always been a very healthy, guy! Thanks for all your kind words and thoughts.

1.6M? Wow, if only you could share those precious platelets to us. So did the splenectomy work? Was it just "delayed"? Or is it a combo of NPlate and the surgery?

He may not always have ITP. I struggled for many years until I hit a 6 year remission. I see my hematologist once a year. No biggie. I know it could recur, but then again, it might not. Some people get lifetime remissions. Keep us updated.

I wish it was possible to share those platelets! I remember the sinking feeling we had when Neal's were 7500, then 3000, then none, then 1000, back to none, etc. I don't know if his doctors have confirmed that his counts are the result of the combination of splenectomy and Nplate, but they did discontinue the Nplate for now. I have heard removal of the spleens (he had 2) can take a while to work. Best of luck and prayers to your little boy. I understand in children it usually is short-termed and eventually goes away. My son is 30. Thank you Sandi for letting us know there is a chance of lifetime remission. He deserves to be well to raise his two little boys and have a lifetime of love with his wife. They all do. God bless you.