Thank you everyone who so kindly replied to my query. What I always thought was that ITP is only diagnosed when your low platelets are assumed - by elimination - to be caused by an auto-immune reaction in your body. Should another cause be found instead I thought you simply have low blood platelets for that particular reason, AND NOT ITP.
Am I wrong?
What my hematologist told me was that ITP is a diagnosis of elimination, meaning they had to rule out any other causes before it could actually be called ITP. After an abdominal ultrasound and many blood tests that ruled out other causes, I have ITP due to autoimmune disease (lupus). I think you are correct. There are different variations of ITP, one is idiopathic which means there is no known cause for the low platelets. Hope this helps.
My ITP was finally diagnosed by a bone marrow biopsy 15 yrs ago. I have no other autoimmune disease, my platelets vary between 20-70 during the year.
Yes itp is foreverFrom what I understand had it since july17 drsaid I’ll will have it forever and probably have a secondary or even third immune something.
They don’t know why and neither does anyone else. It is frustrating. And $$$ to keep up t heconstantlab tests and dr appointments good luck
Just 4 days ago I was diagnosed and am terrified. Otherwise healthy 69 year old woman. They gave me IV steroids and next day a platelet transfusion and then another 6 bags of something I didn't listen to very well. Too emotional. I went in with 4,000 and out in 2 1/2 days with 60,000. Put me on dexamethasone 40 mg/day. Also something to protect stomach but it made my gut worse so they told me to stop. I believe mine could've been caused by too many NSAIDS - not daily but over 4 years of use because of a car accident the pain clinic I think has finally taken care of with ablation. I was on opiods all this time but have gone off vicodin. It is very scary for me - Spleen is fine and so are white and red cell counts - no markers but they did do a bone marrow biopsy to cover all bases. They told me sometimes they just do not know why this happens.
It helps to share. Doc will take me off steroid if my level is up tomorrow but I definitely can see the frustration of now have to be continuously checked. I did not feel bad but had outward signs something wrong. Blood blisters in mouth and unexplained bruising with red dots all over legs and arms. The blood blisters disappeared before i left hospital. I am not coping too well emotionally and if anyone has ideas please share.
Thank you so much.
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