This was some roller coaster ride. I have very low base levels. With no treatment they can go as low as 2 or even 1. I then have a lot of petechiae and the lower the levels the higher up my body they are. At 4 I get blood blisters in my mouth. But I was always good even with low levels.
I was on vacation and had low levels. But this time I also got like some nose bleeding. Not actual bleeding more color when sneezing into a tissue. I was on nPlate but somehow this time levels got really low.
I was not worried, been there plenty of time. Just this time the petechiae were really severe. In any case I was relaxed about things.
Then from one moment to the next I lost my ability to speak. I knew instantly that that could only be a brain bleed. Recored the whole incidence while driving myself to the nearest hospital 30 minutes away. Regained my speech 5 minutes into the drive. Checked myself into ER. TC at 2. They give me a platelet infusion and nPlate dosage. Fly me to a near Near ICU. One more speech loss attack next day.
I had a little bit of blood visible under my skull. More medication and after 36 hours out the door.
Flew back to Europe 3 days later. Still low levels. They put me on 40mg DEX and another platelet transfusion. Levels recover.
From there my levels almost normalised. I had full months where I did not take anything. No nPlate, yet TC where between 250 and 500. Almost felt like I was in remission. Then after 6 months of nPlate maybe every 3 weeks or so it all came crashing down again.
Now I asked my haematologist if we could do the same treatment again. Like DEX 4 days at 40mg and a platelet transfusion maybe twice. He said it is not a proven method and therefore he can not support that.
It felt so good to have this hope of remission and it was actually totally different from before. But he refuses to repeat the treatment that actually changed things.
Any ideas what I could do? At the moment on 5mg Spiricort a day and 250 mcg nPlate per week and Tc between 50 and 85. I check daily.
Diagnosed 7/2019 let the fun begin...