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TOPIC: newly diagnosed with ITP or at least coming to terms with having it

newly diagnosed with ITP or at least coming to terms with having it 1 year 9 months ago #60382

  • thaacker
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Hello my name is Tyler and I am newly diagnosed with ITP. I know for most part the story is familiar with everyone who got diagnosed with this auto immune disease. I was diagnosed 3/31 of this year but should signs I did not know beforehand. I did not know it though see I am a car guy in the middle of restoring my dream car a 1968 mustang. And coming bank in to the house after working in the garage meant coming back in with bruises and blood dripping from my hands not big deal to me. But the 29th I came in hopped in the shower and noticed little red dots all up my legs I showed my wife and we decided to see if it changed overnight. The next day I woke up with it on my hands and a couple on my face but I felt fine mind you so I call my boss let him know I am off to urgent care to look at some sort of rash on my skin, urgent care takes a blood sample and send me on my way I go back to work still with the rash but still feeling fine. After work I head to a local diner for my sisters birth day and we are all sitting eating dinner. When I get the call and when I answer it’s the doctor and they state I need to go to the emergency room as soon as possible. So I give my car keys to my brother in law and my wife takes me to the emergency room, there they tell me I was below 2,000 platelets and are amazed I am not bleeding out of me ears or mouth. The put me on extremely high doses of prednisone and sent me home and told me to not do anything entail I go see the hematologist. That following Monday I went and saw him we played with prednisone doses for a while then went to retixumab (spelling) I am still waiting to see the high increase in my platelets since the rituxum was done 4 weeks ago now. I got my lest test last Monday but have not heard back with results yet and its now Friday (9/1/2017) this is the first time they did not contact me a half hour after my blood was drawn. Yes I have called them and asked for an update. But still know news I guess I am taking as if my platelets are not low enough for them to call me right away no news is good news tell I go see my hematologist week after next.

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newly diagnosed with ITP or at least coming to terms with having it 1 year 9 months ago #60383

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi Tyler. Welcome.

Your story is very common. It's horrible to be introduced to ITP that way. Sometimes doctors who are not familiar with ITP can overreact and scare the bejabbers out of you with the call to rush to the ER. Very few people with counts of 2k would be bleeding out their ears and mouth.

Did you have a response to Prednisone at all?

Rituxan can take 4 to 12 weeks to begin to work. Hang in there and hopefully it will kick in soon. I saw a response the week of my fourth infusion, but that is pretty fast. Apparently, I'm a good responder. If Rituxan doesn't work, there are other treatments that you can try that have a better success rate. Hopefully you have a good Hematologist who is familiar with them.

As a group, we have a lot of knowledge and experience. Please feel free to ask any questions that you might have.

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newly diagnosed with ITP or at least coming to terms with having it 1 year 9 months ago #60385

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yes i did my numbers,jumped up into the 40,000 area the highest i have been since the Rituxan was 86,000 then i deeped down to 48 two weeks later i dont know what i am at right now my the doctor i am working with has worked with a couple other people with itp and has stated the last thing he wants to do is remove my spleen (i am thinkful for that) he didnt come stright out and say hey this is for life but hinted at it to me through out my apointments sorta letting it naturaly sink in. they really sucky part about this is before all this i used to play paintball and stuff things were bad bruises are,common but all i can do is home for a remission so i can get back to doing things i enjoy. i mean i have still been working on my car but slowed my pace way down,

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newly diagnosed with ITP or at least coming to terms with having it 1 year 9 months ago #60386

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'd love to see a picture of that car. A Mustang has always been my dream car, but I'm too practical. I always wanted a yellow one.

It's great that your doctor does not want to push splenectomy. It's becoming a very outdated way to treat ITP. It often doesn't work and can cause a whole other set of problems.

ITP is not always for life. I struggled with it for 8 years then suddenly had remission. I've been in remission since 2005. I thought I'd have it for life too. I know that it might come back but if it does, I'm okay with that. I handled it before and I know that I can do it again. I'd ask your doctor what count he would like to see for paint ball. You might be able to maintain a count high enough to be able to do that. It can take some time to get there though. 50k is usually a safe count for things like that but I'd check if I were you. The weeks that you hit the target count, you'd be able to do the things you enjoy.

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newly diagnosed with ITP or at least coming to terms with having it 1 year 9 months ago #60388

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thank you for the advice i will bring that up at my next appointment. ad for a pic of the car i will post that when i get home since i have no pics of it on my work computer

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