33 Y/O Male with ITP, Intro

I have to start reading all the threads again, I didn't even see that Gort had posted. I thought, what is Julia talking about, and scrolled and scrollled, AHA.

Steve, also let me add to what you said the (immortal?) words of Frank Herbert:
I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain

Erica

itp has definitely changed my outlook on life. as of right now i have a count of 218000 last week i had 3000. now we are waiting for the ivig to weAr off and to see if im acute or chronic. keep your fingers crossed!

How are you going to tell if you are acute or chronic?

if my levels drop again within the next month or two or not.

Ian, levels can go up and down several times, but what determines chronic is the length of time that happens. If you still have problems keeping counts up and have to treat after a year, then you'd be considered chronic. It takes time to know that.

oh. ok thank you...im still confused about everything. like if i have the child form or adult form etc. i guess it all takes time to figure it all out. i see my hematologist on tues so ill ask him everything

My sister had ITP when she was about your age. She did Prednisone a few times and after a year, went into remission. She is now 44 and has never had a recurrance. You just never know.

hopeing thats the case for me. im on 60mg of pred and ive had an ivig. now we are just waiting,

This is all so amazingly encouraging and helpful!! God bless this website and all of you!!!

Kate

Hello Mark.

Certainly understand your frustrations. I've been dealing w/a diagnosis since March 2009. Was on steroids from July to November. Now I am on Nplate. It's a weekly injection. My platelets are holding steady, thank God. ITP is a roller coaster. Talk to your Doc about Nplate.
Take care,
Mordii

Hello Mark - i had chronic ITP for 10 years, i think my avg count was roughly 7k. Last March i was hospitalized w 1k count and went through all the treatments steroids, IVIG, Rituxim, etc. Nothing really helped until i started doing extensive research. I started to see a naturopath, i realized my Vit D & Vit B levels were extremely low. The most important thing is to get your immune system strong again! Your body can heal itself just feed it the right things, here's what i take it's mostly a vitamin regimen:

Wheat grass (i buy mine at whole foods, powder form)
2 capsules of astragulus (chinese herb been around for 1000's of years- google it)

Lunch i take:
2k mg Vit C
1 vit k
1 vit k2
Vit D
Vit b12
2 omega 3
Vit b complex
Iron ( check your own levels w your doc)
My advice would be to go to your doc and ask for a vit level test, most md's don't like to prescribe vitamins but it's the only thing that's
helped me in over 10 years:) my last count was 90k, no bruises and mouth sores I am truly blessed to have found my own cure. I don't
even get headaches anymore i also workout 4x's a week which also helps. Best of luck and i was in your shoes please whatever you do try and reduce your stress and get your immune system healthy:)
Coconut oil (in my morning coffee) also google it, there are many health benefits

I forgot to mention i also take 1 potassium supplement before bed (helps w sleep too)

My naturopath also recommended melatonin and sesame oil, again i encourage you to do all your own research. I am not a big fan of some of the heavy drugs that are prescribed by most MD's to treat ITP. When in ER of course i will do anything they tell me but living day-to-day w any autoimmune disease it's important to stay healthy, whatever your disease may be.

I know most people can increase their own platelets naturally.. Best of luck:)

Itp does put a damper on things I'm 26 and been diagnosed for nine years no treatment my platelets are 5 or under I can't always do what everyone else does but I just learned to do other stuff I enjoy I still walk my dog everyday work out go out on a boat do t let it control your life I'm sometimes just glad itp is all it is you will learn to adjust it takes time keep your head up and don't let itp ruin your fun

Welcome Mark. After reading Steve's post, I do not have much more to add. He explained this whole thing Very well!!!
Good Luck on thes "rollercoaster" ride!!!