New with a scary situation

Hi everyone, my name is Jessica and I'm very new with the ITP diagnosis. It started 2 weeks ago when I developed a shingles rash and was given 2 different antiviral drugs to treat. Which I'm only 35 so it was weird but my doctors weren't concerned because it was 1 small spot. I had noticed red dots under my skin and bruises that devolved out of no where. I went to the ER where my platelets were down to 5,000. My urin test showed that my blood was so thin my kidneys were expelling red blood cells whole. I was immediately given 2 rounds of IVIG and platelets. Both of which I kept dropping in levels. Then they gave me 40mg of Dexamethasone. There was also talk about removing my spleen. I was in the hospital for 8 days trying to get my levels up. On top of that I started to show signs of TTP and they had me waiting for possible plasma transfers if things didn't change. Oh yeah, my period was due to begin so they started me on meds to postpone until they could get my platelet count up. I was released 4 days ago on a high dose of prednisone and I have blood work every few days until my first hematologist appointment next week.

I'm glad to have found these boards. I've been scared and I don't know who to talk to. I'm still trying to get back to feeling normal. I get tired very quickly but can seem to do more every day.

You came to the right place. You can get a lot of information and support on the PDSA.

Low counts can be scary, but very few people ever die from ITP and it can usually be managed with treatments. There are several options and if one doesn't work, there are others. IVIG is usually a very temporary treatment and doesn't last long. Platelet transfusions are useless and should be used for emergency bleeding situations. Low counts alone are not a medical emergency, but the symptoms can be if there is bleeding.

Hopefully, you will have a Hemo who is familiar with ITP. Some of them are not and tend to go with older methods of treatment. Splenectomy is not a cure and sometimes does not work. There is no reason to rush into that. Sometimes ITP is temporary after an illness or medication so it's a good idea to wait at least a year before considering that.

With ITP, it's not necessary to maintain a normal count; anything over 30k is safe for daily living. ITP can turn life upside down for a while, but things will be normal again in time, whether ITP resolves or not. Everyone eventually learns to live with it and we all have normal lives.

TTP is really scary and hopefully, you don't get that diagnosis. Stick with us and read. You will have to advocate for yourself.

Jessica..It's all very overwhelming to start with. I've been a renal nurse for many years and it hit me like a bolt from the blue. I'm never ill and get annual letters thanking me for 100% attendance at work. Viral sinusitis last May & got sent home from work. Covered in bruises in July, platelets of 12 and admitted to hospital immediately.

This might help. It's booklet for nurses with very little knowledge of ITP. It was a boon for me when I was first diagnosed. Anne

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF