Frem

My son was diagnosed in October 2009, with a platelet count of 1500. Imediatly did IVIG platelets rose but 1 week later was back down to 5000. Started high dosage prednisone, good results and tapered dosage over a few months. He was at ok levels for a time, and when they dropped he did pulse doses. In May 2011 his platelets were 25,000 the prednisone did not raise the counts as high or last as long, eventually results were not there and the side effects were not great. On July 6 we tried WhinRho by 7/13 platelets were 276,000 and by 8/8 they were 8,000. We could not get them above that level.In September 2011 his platelets were 1,000. He did a second IVIG, no results. He started the first of 4 doses of Rotuxan 9/16/11. Platelets stayed between 1 and 3 thousand until the middle of October they started to rise. By Christmas they were 122,000 and in January they were 114,000. We are very excited with the results, we have not done a count since 1/9/12. This past week he started with minimal patechia, and a very small bruise. We are watching closely, and are scheduled another visit in March.

My mother and sister were both diagnosed with ITP as middle aged adults, eventually having splenectomies.

My question is: Does any one have any new information on treatments or suggestions, just in case? We have great doctors, but always looking and praying for information.

Promacta or Nplate. Nplate is the only thing that works for my son. Similar story to your child, only he had two remissions and one partial remission, each lasting about a year or less. He's allergic to winrho now, IVIg only gives about 60-80k counts for a few days then back to bottom (right now less than 1k). If his new doctor would stop being a stubborn...um...guy...we could stabilize his counts on a maintenance dose of Nplate. I'm hoping that will begin this week, since his approach has not been working out too well.

My son's paternal grandma and aunt both have chronic refractory ITP, diagnosed in adulthood. Tim's is much worse than theirs. Granny and aunti are both splenectomized (is that word?), but it did not good for them. I won't allow it for Tim unless there is no other choice.

NPlate was mentioned long ago, but Drs. were not anxious to try. We had to push for Rituxan, but are happy with the results. He was able to play basketball this season, and that makes it all worth while. We are praying he stays above 30K, that would be a success for me. He would not be happy because of the limitations. But after battling platelets below 3K for months, we will find other hobbies. I will look into the other medication, Thank you for your response.

It is interesting to see your family history, mine has a history of autoimmune issues. So much for not being hereditary.

We will keep your son in our prayers.

There's an interesting article here about familial thrombocytopenia which they say is often mistakenly diagnosed as ITP. Maybe that is what both of you are dealing with and why the conventional treatments don't work.

asheducationbook.hematologylibrary.org/content/2004/1/390.full

My daughter was diagnosed March 2010. We have done all the normal drugs, IVIG, Prednisone, WinRho. We were approached last summer about doing a trial study for Promacta. We have been on it since July. Her numbers are currently at 220K and have never dropped below 38 since Sept. We are seeing good results it has just been up and down due to study requirements. My daughter hit a low of 2K and a high of 450K. So we have seen it all. She is now 5 and we are hoping it will just resolve itself one day.

Good luck...

Jennifer