New Diagnosis of Acute ITP

Hi Folks. I was diagnosed last week with acute ITP. It came on so quickly that I was taken completely by surprise. Last Tuesday I noticed blood blisters in my mouth. After a few days, I went to my MD and asked if I was having a bleeding disorder. He said it was a virus and gave an rx for acyclovir. The next day I began with petechae breakout on my chest. I went back to the MD and he ordered blood work. An ER doctor called me at 430 am and said to get to the ER for emergency treatment of low platelet count. On Friday, my count was 8000. By Saturday morning my count was 3000. I had to have a platelet transfusion x1 to prevent bleeding in my brain. I'm on 60 mg of Prednisone daily, to reduce the dose 10mg per week. My last platelet count 4 days ago was 48,000. So I improved from 3000 to 48,000 in 3 days. The doctors do not know what caused ITP except for perhaps a virus. My Hemo MD says ITP may resolve and never effect me again. I have type 2 diabetes controlled, otherwise in good health.

Questions: What could have caused this sudden attack? :ohmy:

I have trouble believing it was a virus because I have not been sick. (although I did have a herpes blister on my lip when this started, nothing new to me). I've been taking the same drugs for several years without problems. There are no genetic links. There was nothing new in the way I live and eat.

Can a low Vitamin D level contribute or cause acute ITP? :blink:

Today I learned my Vitamin D level is low at 16 (normal 30). All other labs are normal.


Thanks in advance for your help.

One of the very first questions we often ask is what causes this frightening disorder called ITP? The honest answer is it's completely unknown. You can read here of speculation it's due to this or that but it seems human nature to try to understand why. If we understand why then we can attempt some control and it'll go away. How we all wish that was true because we would be there in a flash! The fear of ITP might be due to our fear of the unknown and/or the frightening deadly outcomes many MD's speak of. However the incident of deadly outcomes is low, real, but low. But once we hear spontaneous brain or internal bleeds it's virtually impossible to forget it.

All of the people here are living with ITP, many have lived with it for years (I'm 10y and many are longer), and many are in remission (I was 10y and now again for 4m). I also received a middle of night order to head to ER and didn't have a clue what was happening! It's generally about the severity and the symptoms which vary by individual. I for example haven't bled other than black&blues and petechiae even with 0 platlets. Some have nosebleeds and cuts are always a risk.

Acute ITP does certainly occur as some here can confirm. For the rest of us it is chronic and generally manageable. However a particular treatment does not always work for everyone and the timeline to find a treatment is longer than we would like (it's not take this Rx for a week and come back if you're not better).

I'll be praying you do have an acute case and it'll soon go away. Know that regardless of acute or chronic, this site is a blessing of compassionate and knowledgeable people to support you. I believe the ITP experience and knowledge here is better than many MD's. It's not medical nor scientific but it's invaluable to help each of us live with ITP. Ask ANY question here because it's very likely someone has experienced the medical procedure, misinformation, confusion, anger or fear.

Hi Critters - I'm glad you found us. As Steve said, very few of us know what caused ITP. I believe it begins with a genetic predisposition and something comes along to trigger it. Do you have any history of autoimmune disorders in your family?

It's been found that low Vitamin D levels can contribute to autoimmune disorders, but recent research also states that Vitamin D can exacerbate autoimmune disorders. Which came first, the chicken or the egg? There are no clear answers yet. I also have a low level of D and have treated with high dose D twice. It hasn't made much difference yet and I can't get my levels up.

Dying from ITP is rare, as Steve said. At 3,000, I was still working and doing my normal thing. A lot depends on symptoms and you learn to look at that instead of the actual numbers. Some doctors are calm and some are a bit more excitable about low numbers. What's important right now is that you are going up and as long as you are responding to treatment, there isn't much to fear. Stick with us and learn - that's definitely the right direction!

Thanks, Steve and Sandi, for your responses. Are there any treatments that works for platelets counts at 3000 besides platelet infusion? I really didn't want the infusion but the doctor and nurses at the ER said I would die without it. How about Prednisone and no infusion? I asked but they poo-pooed it.

Actually, Prednisone would have been the more appropriate treatment. Most ER doctors are not familiar with how to treat ITP and tend to freak over low counts. Just because you had a low count does not mean you would die. People with ITP tend to have larger platelets and those can work quite well. Platelet transfusions do not work because the antibodies kill off the platelets quickly (usually within hours) and you're right back to square one.