Recent Diagnosis

I am currently 16 years old. I got diagnosed with ITP on August 4th, a day after my 16th birthday on August 3rd. Though, I knew something was wrong for months before that.

In the beginning of July, I got a terrible stomach flu. I thought it was a hangover because of the Canada Day drinking I did with my friends, but it lasted a week. Once I recovered that, I got a fingernail infection. I got it popped and was on antibiotics, but then I started to notice these random rashes. Rashes that didn't turn my skin tone when I press down. I knew that was unusual.

I avoided medical attention because I had already seen 2 walk in doctors that week: one to get a doctors note for work when I had the flu, when I had the fingernail infection, and when I got the rash checked out. He told me I was getting bitten by a bug and scratching on my skin!

I avoided it, until one day when I was working the rash spread. I started to get a really itchy leg, and so I went to the washroom to figure out what was going on and I got black, blue, and purple bruising all over my legs. I found out those were purpura. Obviously at that point, I need to go to the emergency.

They tested my blood and admitted me for an IVIG and I was calm because I didn't know what I was getting myself into. 2/3 times I've had meningitis side effects. First time I threw up. Had petechiae all over my face from puking. My platelets were 13 at that time.

Long story short, I've had ITP for the span of a month and I have had 3 IVIG transfusions. I had not tried steroids yet as they do not want to treat me, due to side effects, if I am not bleeding (or below 10). The thing is, at the moment I don't even know if I'm below 10. I'm so rashy, itchy, bruised. I have to wait until Friday, when they are treating me with steroids, because I am getting my period and I loose too much blood.

Last time I got blood taken, I had a finger poke, and I shot blood all over her lab coat. I was at 18.

My platelets have been 13, up to 44 with IVIG, down to 22, up to 48 with IVIG, down to 15, up to 40 and 18 the last time I checked. That was a few days ago and I know it dropped.

Is it chronic because I'm so low? Am I going to die? I'm only 16 and this is all so new to me and it's crazy. I never knew ITP could occur. Let alone to me. I'm so sorry for anyone who is going through this!!!!

9 Replies

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  • Hi, firstly you aren't going to die directly from a low count! I had a count of 3 when I discovered I had ITP.

    It takes time to test different treatments and see what helps. Just hang in there!

    I had bruising, spots, blood blisters in my mouth etc for months before finding a suitable treatment.

    Chronic means it is not going away, not how bad it is. Have they not given you any Tranexamic Acid tablets to help with the bleeding? I think it's also used just for heavy periods, ask about it!

    Good luck, it's a rollercoaster for sure.

    /Jason

  • Hi

    I agree with Jason you will not die directly from a low count, I have had itp for 2 years now and most of the time my count is between 0-5 and i am still alive! The ivig does make your count go up and down as it only lasts for a while. It will take time for them to find a medication that will stabilise your counts. But don't give up as there is loads for them to try. As Jason suggests Visit your doctor to discuss Tranexamic acid as this may help with your heavy bleeding (it's given to women without itp as well for the same reason) if you google itp there are itp associations that will give you loads of information about the condition which may help you. I hope this helps

  • ITP from what I understand is managable. I was told I had ITP in May when I went to emergency for shortness of breath. I had an enlarged heart and they found low platelets. I've had ivig and it didn't work. My platelets went up to 102. And crashed to 17. I have been on steroids now for 3 months and they stabilize me above 12 so I went back to work part time. Try to stay calm cause stress seems to make problems. Look on here for diet changes you can make and do some of your own research. The steroids might be rough at first but they might be the key to make you feel better. I had a gum infection when they found my platelets low but none of the dr. Will say this could have caused it but I know in mind it did.

  • Hi little Friend, don't get afraid but be accustomed with it. There are a lot of people having ITP like you and they aren't gonna die. Be positive with your situation and move on with a good care of your health. God bless you dear !!

  • I would like to stress what has been said already - you will not die because of a low platelet count. I was diagnosed 8 years ago, although I suspect it might have started some time before then. I only discovered I had it during a routine visit to my doctor, when I mentioned that I was concerned at the number of large bruises I was getting mainly on my legs. My blood was taken and the rest, as they say, is history. I was monitored for a few years as my count was around 50-60. But in 2013 it dropped to 29, and that's when I climbed aboard the ITP rollercoaster! I was put on steroids immediately, then iVig, followed by rituximab and finally romiplostim. It was the latter that did the trick, stabilising my count at between 40 and 60. The romiplostim took the form of weekly NPlate injections, which after a few months I was taught how to inject myself. I continued on the injections until February of this year when I asked if there were any tablets I could take. I had just booked a holiday touring round USA, and could not guarantee that the injections could be kept refrigerated. I started to take 50mg daily of eltrombopag (Revolade) and my count rocketed up to 487! The dose was reduced to 25mg and after a couple of weeks my count stabilised at around 120. This is where I am at the moment, visiting my haematologist every two months for blood checks. I must add that I only suffer from bleeding gums and the occasional nose bleed, no fatigue, no bleeding or rashes. I suppose I am quite lucky really. I don't feel ill and refuse to see myself as 'suffering' from ITP, as far as I am concerned I have a blood disorder which I have learned to live with. As you are quite young you might be very lucky and go into remission, but don't get your hopes up. I know it's early days yet, but learn to live with it, refuse to let it get you down and live your life as you want to. Above all, do read posts on this site, you will find a lot support on here. Good luck for your future - you do have one!

  • Its scary at first but its manageable, it does take a wee while to find the right drugs so dont worry too much. My consultant told me any one who has a level above 50 is able to live a perfectly normal life with a few minor precautions, unfortunately mine go to below 10 without treatment but Ritubimax has worked for me and 18 months later my platelet levels are still over 100, I have 4 monthly blood tests and know what symptoms to look out for should they suddenly drop.

    Hope all goes well for you xx

  • Mine go as low as 8. I'm on prednisone now, 150 mg/4 days. Hope it helps.

  • Mine were regularly going down to between 2-5, the Prednisone worked well for me but wasnt a long term answer in my case, it can sometimes take a little time to find the right medication but dont despair, my levels have been well above 100 for over a year now and I only have to get a blood test every 4 months to check everything is still OK xx

  • You will not die, try not to Google search to much about the condition, I have found this website offers the best research about ITP. it is very scary at first because you don't know what has caused it and you have no idea what ITP is. I have come to terms of being one of the unlucky one's that has ITP, but it doesn't get me down and doesn't restrict me from much. I have had to stop playing football but still continue to play golf and go out with friends. it does get easier as time goes on. I have tried every drug to suppress the immune system but nothing has worked for me, the only thing that keeps my platelets up is IVIG but that is only for 2 weeks. I have been for scans on my spleen and it has shown my spleen is destroying my platelets, so the next chapter in my ITP story is to have my spleen out, so hopefully I have some luck with that.

    Tom

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