Dominique. I was in the same situation this time last year. Healthy, active, energetic, never went to the Dr because I never had the need to go. Had never been a patient in a Hospital other than tonsil removal as a kid. Last June I began developing bruising all over my body, I felt incredibly fatigued and not well. Scheduled a Dr's appointment and the morning of that Appointment I awoke to see that rash(Petechiae) consuming both lower legs. It looked horrible. Blood test as Dr had my platelet level at 2 and I was told to go to the ER Immediately. COnsidering how I looked and felt I assumed that I was headed for my last round up for sure.
I spent 6 days in hospital. I was on Prednisone and multiple IVIG infusions which brought me up to a level of 42. I was released and tested every 3 days. 6 days out of hospital my platelet level was back down to 3. The bruising, the petechiae, looked even worse and on top of it I developed those black blood blisters in me mouth as well as bleeding in the gums. I was back in hospital for 4 more days this time in the ICU where I received a platelet transfusion(which didnt work) The decision was then made to begin 4 weekly Rituximab infusions along with weekly Nplate injections. It took about 3 weeks for my platelet levels to respond positively to those treatments but respond they did.
I was out of work for 7 weeks but eventually my levels were well within normal range. I stopped the Nplate injections last November and my levels have been stable at 100 since that time.
So, I understand your concern. Believe me, the first month or so is nothing but confusion, stress, and concern especially when waiting for the next blood test result. It can be a bit devastating as your platelet levels appear to rise over multiple CBC's only to have the level drop. It happens. It took a few weeks for the Rituximab infusions to begin to register significant increases in my platelet levels but eventually it did.
This site is a great resource. Although there is a great deal of anxiety about ITP when the cause can not be determined there is a lot of helpful info here. The most helpful thing I have found however is that the vast majority of us who have ITP are still around. EVeryone is different and we have all pretty much had different combinations of treatments but here we are. Still alive and kicking. you and your husband will get through this. Its going to take time to adjust to what it all means and waiting for the treatments to kick in but they will.
