Started my battle 5/1

Hello everyone,

I was diagnosed with ITP on 5/1 and the last few days have been really overwhelming emotionally. I'm so glad I found this forum so I can read and connect with others who have my same condition. I've felt very alone which has made me cry quite a bit! :pinch:

Over the last few months I noticed I was bruising easily and have petechiae on my lower legs. I visited a dermatologist who told me the petechiae was no big deal and to wear compression socks. At 27, this was a bit strange but it worked. Then over the next few weeks, the spots would come and go.

Fast forward to last Tuesday, my OBGYN did a blood test and I came back with 7, so I came up to the ER and began a long process. All my blood work looks great except my platelet count, but the most frustrating part was the first hematologist I saw. He told me after 1 dose of prednisone that if I went down it was not ITP and we would have to look else where. So when I woke up Friday morning to a count of 3, I freaked out. Two more hematologists later, I understand this disorder better and how it can be treated. But that first guy made me think I was going to die.

I'm currently waiting for results of my latest platelet count. If they have gone up, I will be leaving the hospital today and continuing the prednisone. If not, the doctors want to do IVIg. I am hoping with the preemptive IV cocktail I do not have any symptoms. The amazing thing is despite my low count I have no bled from my gums or bled excessively from a cut or anything. I feel so lucky that I am not having those issues, I know I could be much worse.

Any advice would be greatly appreciated. I know that I will have to deal with ITP for the rest of my life, I'm still trying to wrap my head around it.

Too many doctors are ignorant about this disease. You need to find someone who specializes in it.

I'm glad you found the Forum. I'm sure it will be helpful in days and weeks to come.

It's too bad that you had some bad experiences with your doctor. Doctors can set the tone for the way a patient deals with ITP emotionally. Having a doctor who is knowledgeable and calm can make all the difference.

Many people do not respond to Prednisone but they do in fact have ITP. IVIG is usually a temporary treatment. It can get counts up but does not last long for most.

You may not have to deal with ITP for the rest of your life. Many people have remissions and sometimes, ITP is acute and goes away in a few weeks or months. I struggled with ITP ups and downs for 7 years, but have been in remission for the last 8 years. I never thought that would happen. It may recur or it may not; I am fine either way.

Having no symptoms is a very good thing. It means that your body is handling the low counts well. People with ITP tend to have large (new) platelets that work well and also tend to have lots of platelet fragments that also work well.

Good luck with your count today. There are many treatment options and it can take time to find the one that works best for you. Patience and knowledge is key.

Finding a doctor who knows and understands ITP is a good suggestion. I also suggest that you try not to freak out until you have been under treatment for awhile. I am one of those lucky people who had an acute case and after a splenectomy in 1974 I seem to have been in remission. I still get very tired, experience a great deal of "mental fog" when exhausted &/or sick, or sleep deprived and also bruise easily when I am fighting an URI or the flu, but otherwise I have lived a pretty normal life.

The worst part is that others who we need for support might not be able to see that we are as sick as we feel. I sleep a lot more than most people, I need to and I am tired of having people suggest that I am merely depressed.

You have found the right place for support and information and I am glad for you. No doubters here.

A lot of us got scared by medical professionals before we learned more about ITP. I remember how the lab techs made me sit in a chair for over an hour waiting for my results and wouldn't look me in the eye or talk to me after they saw my low number.
Erica

Lady Nole,

Welcome to the forum! Your story sounds very similar to mine. I also had the bruises that my doctor didn't really react to when I told her. It took a bruise literally smack dab in the middle of my forehead for the doc to do CBC's. I was at 4 and was sent to the icu. I do not respond to prednisone at all. I did respond to IVIG, but the effects are temporary. I was 27 when I was diagnosed in dec of 2012. I'm currently on Promacta and am living a pretty normal life. I know things can change on any given day, but have learned to take it day by day and live my life to the fullest. If you have questions feel free to ask.

One of my biggest hates in life are doctors who scare their patients or use scare tactics in order to get them to follow a course of treatment not necessary because its the best option, but because its the only option they know off.

All I can say Lady Nolan is that I was diagnosed with ITP when I was 17 and didn't need any treatment until I was 32.

I am now 34 and I am towards the end of my second course of treatment.

After reading peoples dealings with ITP and their experience, its pretty safe to say everybody is different and everybody responds differently.

Also it does seem that those with ITP also suffer from some other auto immune condition.

My advice would be find a Hemo who you are happy with. It may take some time and you might have go though a few of them but you want somebody who you are comfortable with and who you trust.