24 y/o male, diagnosed w/ ITP last week

Hello all, happy to have found this site.

A bit about me:
24 years old, college graduate, construction project manager, married, kid #1 on the way.

I was hit with ITP last week by a Hematologist I was referred to by my family doctor.

My platelet count was 5, the hema had me get drawn again, still 5.

Tomorrow and Friday I go in for a loooooooong drip of IVIG and pred. Has anyone seen long term success from this? I'm nervous about all of it.

I have never had a single health issue in my entire life until this.

I can recall having extreme bruising as far back as November and those were bad bad bad bruises.

Also, if it matters at all, here's a timeline of events in my life in the last 8 months or so.

10/1 I made an offer on our new house
10/8-10/14 Florida vacation
10/15 an old man ran a red light and totaled my car with me in it, I was OK
10/16 our house goes up for sale
10/20 our house sells
11/27 earliest recalled bruising, bad ones!
12/5 we move in with my mom and dad for a month
1/6/14 we move into our new house
minor symptoms throughout this time, bruising, some petichae, blisters inside lip
5/14 trip to family doc, cbc, platelet 5
5/23 appointment with hema, cbc, platelet 5

ffwd to today, with my infusion etc tomorrow and oral pred starting saturday.

What makes me most nervous is the lack of other people in my age/sex bracket.

n8huckins wrote: What makes me most nervous is the lack of other people in my age/sex bracket.

Hello there! That shouldn't make you nervous. While it's true that men are less likely to acquire autoimmune disorders, the board has many of them. As for age, ITP does not choose a person based on that. We have babies, children and teenagers with ITP. My sister had it when she was 16. People of all ages can be affected.

It looks like you had a lot going on prior to diagnosis, but doesn't look much different than the normal stressors in most lives. Stress can contribute to the triggering or exacerbation of autoimmune disorders, but there is normally a genetic predisposition to acquire it in the first place.

IVIG is a very long, expensive treatment and is mostly used as a rescue to get counts up quickly. It does not last long for most....about a week on average. Some have had better luck, but it is not used often as a way to manage ITP unless you don't respond to much else.

Welcome to pdsa! I was 27 when I was diagnosed two years ago at a count of 2. I think I had itp for longer. Actually in the past week I think there have been about four newly diagnosed people in their 20's who have posted on here, so you are def not alone. One of them was a male. Good luck with your IVG treatment. There are people who have responded to pred. My best advice is read and research everything you can me familiar with treatments etc. I will be honest itp is a rollercoaster ride emotionally, especially at first. Being knowledgeable and having a support system is essential. However, it will get better and easier! Most of us are living productive active relatively normal lives!

Hello & welcome to PDSA.
I am one who responds to IVIG well. Have had it twice & reasonable counts lasted several months.
I have had ITP 10 years & live with counts <30>. The first IVIG was ordered when I had a nose bleed & counts had dropped, the 2nd when I needed to raise counts for a medical procedure.
Make sure you are well hydrated, pre medicated for headache, & it is administered slowly.
Best wishes,
mj

Hi sorry to hear about the itp know it does take some time at first to find your treatment I'm 28 and have had itp for 11 years it is manageable there's worse things to have so don't lose hope when something doesn't work or last. Easier said then done you can have a normal life I do. No treatment my counts are 5 and under and I'm actually pregnant right now with my first baby, sitting in the drs right now getting my ivig. Ivig for me doesn't lady very long I get it once a week with my pregnant but before I was on nplate which was much easier! A shot a week and done you will find your treatment or maybe even get a remission good luck! Congrats on your baby!

Hey and Welcome.. 34yr old Male here

Men do get ITP, just not as often as women. Also it is more likely to be picked up early in woman, I know it can have an effect on periods and it can also be picked up during pregnancy. Also men are usually quite stubborn about going to the doctors.

On top of that when I think about my own ITP, I was diagnosed at 17 after knee surgery, if I hadn't had that surgery it may of been years before it was picked up.

I played a lot of sports during my teenage and early/mid twenties and would of attributed any bruising to that.

It can be daunting when you are first diagnosed, I remember waiting for the results of a bone marrow test to rule out a number of very scary things. I was actually glad when they can back with ITP.

Treatments, well they are varied and effect each person differently.

The first time I had to be treated I was put on 85mg of Preds and given 5 days of Ivig. I seem to be one of the lucky ones as I had no side effects, actually I felt great after my Ivig. I was like a cat/dog that had just been given their boosters lol. This put my ITP back into remission.


2nd Time round (now) They went with just Preds (didn't work) and then a combination of Preds and Promacta which so far has been doing a great job of raising my count.

Side effect suck but are not so bad that I can't carry on as normal.

For me personally, major prolonged stress appears to trigger my ITP. In the 17 years I have lived with ITP I have only had to be treated twice and both times it was after a prolonged period of major stress.

I will also add remember that with ITP do not get too fixated on your count. Many people manage absolutely fine with low counts (15-30). Each person is different.

no need to be worried, i'm a male and turning 20 in a few months. I felt the same when I was diagnosed at 17, best of luck and stay strong. Do your research is all I have to say

Hiya

Just wanted to let you know a lot of people 'get over' their ITP within 3 months and some a year. From there it is a gamble. I had my ITP for 10 years and then that fateful day my specialist told me 'I hope that I won't see you again' with a smile. REMISSION was a word I thought i'd never hear

Just some pleasant advice in hindsight:
I have recently undergone some counselling just because i think i never let myself be scared or contemplate the situation, i was the 'strong' one and scoffed it off even when my parents were in tears. Keep track of yourself emotionally and mentally because only four years later did I realise i'd have to go back and try and remember and work through some old fears that may have contributed some anxiety I feel now.

All the research and searching and my family will never know why I got it. We have a few theories but I believe it might be a combination of a virus the spurred it on, I already had autoimmune illnesses in my family (so a hereditary link) and I had a lot of stress and emotional things going on in my young self at the time.

I'm 20 now and a female.

If I can give you some advice;
Obviously do what the doctors tell you when it's critical but otherwise try and live your life as normally (and safely!) as possible. Don't let the treat prednisone as a casual treatment. I had massive issues on it- yes the platelets soared but they depleted as soon as i went off them. I was super hyper and dreadful to be around, i was puffy and ate any wheat and yeast in site and gained weight too quickly etc. This goes for a splenectomy (which is usually a longer term treatment if it becomes chronic) My family was really cautious because it wouldve changed my future lifestyle drastically and I am so glad they hesitated because now I am free from ITP anyway.

A few things;
A specific formula- the blood well/restore immune herbal remedies (which are known for ITP sufferers) definitely assisted a rise in my levels after being stagnant at 20 for years. Then i was at about 50 and that was 'safe' for me (better than 1!) I do reccomend
I believe diet and exercise were key, once i had enough platelets to be stable for the huge increase in my immune system strength and for my eventual wellness. Might sound odd, and this might be contested but my platelets only improved after i lost a lot of weight (perhaps an overhall detox of any stagnancy in my body?) and trained each year I did rowing competitively. It was odd.
Cutting out sugars is major for me. in conjunction i got an allergy test and a lot of interesting things came up which should be avoided - this will help your system in general which always helps.
and getting intravenous's before holidays is a good idea if you're really low. You can still go and feel more secure- i had a few scary holiday experiences - broken bones dont help!
The likelihood of ever bleeding too much was low with me even when i was at a very low level- the thing to watch is the head.

Good Luck, don't fear and listen to your body! :kiss: