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N Plate verses Spleen removal

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14 years 2 days ago #19091 by taftad
N Plate verses Spleen removal was created by taftad
Our son has been in and out of the hospital for 13 days out of 21, he had a zero blood platelet two times, the first time was treated with four days of pill steroids got it up to above 20, four days after release platelets went to 12, 14, 32, to zero, bleeding in urine and mouth, had blood platelet transfusion, ivig 4 days, and bone marrow biopsy. ct and ultra sound showed no internal bleeding, and normal except for enlarged spleen 15.3 in size, biopsy showed he was producing his platelets, and other cells normally. Went home with platelets at 121, went to have blood work 3 days later and they dropped to 8, went back in hospital had 1 ivig, and 250mg iv steroids every six hours for 3 days, platelets read 8, 14,47, 46 went home. Had blood work today they are at 57 very good. One doctor wanted to start him on N Plate, and one doctor is want to do a removal of spleen. N Plate seems more dangerous to me, than most other treatments, possible bone marrow fauilure, blood clots, and it is long term and if it is stopped, it can more serious than before you began. It is scary to me. Removing the spleen is a surgery but it could lead to long term remission, especially if other things have failed. I hate to see our son this way he has been through allot, We just are not sure what to do....any suggestions...PLEASE HELP....Thanks
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 2 days ago - 14 years 2 days ago #19092 by Sandi
Replied by Sandi on topic Re: N Plate verses Spleen removal
Two totally different ways to approach treatment. How old is your son?

N-Plate: will not cause bone marrow failure, but can cause fibrosis which is reversible when the drug is stopped. I have not seen any reported problems with this, and patients are monitored carefully. Blood clots are a possible side effect, but again, I have not read of many problems with this. There have been a few people who have actually needed less and less of the drug as time goes on, and seem to be headed toward a remission. Suprisingly, patients are getting off of this treatment without the problems that were expected (serious low counts). It's worth looking into and reading the experiences on this Forum.

Splenectomy: Remissions are less common than reported statistics. Splenectomies can also cause blood clots; this is newer research that is not well known. Some people end up on blood thinners and have low platelets; one thing to consider. Some people do very well after splenetomy and have a normal life. Others do not.

Honestly, you can always quit N-Plate and persue the splenectomy, but you can't reverse the splenectomy once it's done. If he has the surgery, it doesn't work and he needs N-Plate, he will be at a larger risk for blood clots.

I'm not trying to talk you out of the surgery, just giving you points to ponder. Being newly diagnosed, it wouldn't be a bad idea to buy some time to see if he can achieve remission without going to the most drastic option so soon.
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14 years 1 day ago #19115 by Elaine
Replied by Elaine on topic Re: N Plate verses Spleen removal
had he doen IVIG;S/predinsone..you should view other drug treatments out there and give them time..ive itp for 6yrs..and all failed..so i had my spleen removed.. i have loads fo platlets since..and NO DRUGS..so at last im giving my other organs a rest from dealing with all the drugs i have been on.xxx..its only u and your doc..can decide..at the end of the day xxx