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Newly Diagnosed and Non-responsive

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9 years 10 months ago #52264 by sig07
Newly Diagnosed and Non-responsive was created by sig07
Hello, I am in the Army and have been recently diagnosed with ITP. During my mobilization process I was given the flu shot. The day after my flu shot I noticed a rash on my arm. I went to sick call thinking it was an adverse reaction to the flu shot vaccine. The PA diagnosed it as ITP. He sent me to the labs to get blood work done. To his surprise my platelet count came back at 3,000. He made me go to the Hospital and told me to not leave without seeing a Dr. When I saw a Dr, he thought it was a false read and had me redo the test. After the 2nd draw, my count came back at 2,000. Having no prior history of ITP, he sent me back to the barracks for the weekend and told me to return after the holiday break for a follow up. He thought it might clear up on its own. When I returned the following Tuesday my count was still at 3,000. At that point panic set in and the DR quickly consulted with a HEM/ONC Dr at a different Army Base. The Base that I was on did not have a HEM/ONC Dr. After a lengthy consultation, I was given platelets and sent to the other Hospital via medevac. I was kept for several days and given IVIG and dexamethasone to stabilize me. I responded very well and my counts went from 3 to 90s to 100s to 200s. I was released, found fit for duty and was cleared to deploy. I thought this was a one time reaction to the flu shot, as did the Drs. Unfortunately, about a week after I was cleared the symptoms returned with a vengeance. My counts dropped back to 3 and I no longer was responding to the dexamethasone. So they tried a prednisone taper, but that also did not work. The Drs. stopped using steroids because I did not respond to them. So after the steroids they moved onto rituximab. I completed a course of 4 infusions but have yet to see any positive results. Now we are using nplate injections weekly and so far we have not seen any positive results. So in short, in the last 3 months, I have been hospitalized 4 times for 3-5 days each time. Have been treated with steroids, rituximab, IVIG, platelets and nplate and have not seen any positive results. I have had 2 bone marrow biopsies and countless labs and blood samples. All with normal results other than ITP. I do not want to get a splenectomy, which the Drs are heavily pushing. Is there something that we are missing? I have a history of Hodgkins lymphoma which is in remission. During my treatment I had a severe allergic reaction to bleomycin which caused a severe rash, swollen lips and MI. A brigade surgeon on our staff who is a radiation oncologist suggested that he believes that the bleo may be the underlying cause of my ITP. Has anyone ever heard of this? Does anyone have any idea what could be impeding my recovery? I am getting desperate and just want to figure this out.
  • 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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9 years 10 months ago #52269 by Sandi
Replied by Sandi on topic Newly Diagnosed and Non-responsive
Hi Sig. When was your last Rituxan infusion? It can take 4 to 12 weeks to work sometimes. When did you start N-Plate? That can also take a few weeks to work.

Sometimes, knowing or fixing the underlying cause does not fix ITP. ITP can be it\'s own autoimmune disorder. Most people do respond to N-Plate. It\'s probably the treatment with the best success rate. ITP can take some time to get under control, but most eventually do. Many people go into remission but it can take some time and you need patience. Most are not hospitalized or given platelet transfusions unless there is bleeding.

You are doing all that you can right now. Hang in there. It will get better. Read some of the stories here and you will see what others have gone through.