Newly Diagnosed

Newly Diagnosed

Hi there Ive just been diagnosed with ITP rushed to hospital last week with a count of 4 wow what a week its bee had an infusion last weekend if IVIG my levels are now up to 300 & Ive had every test known to man Im still (a bit nervously) waiting for my bone marrow biopsy test results - although one half of it is in and is ok - so its been a roller coaster of a week i have a condition now -that will take some getting used to Im 56 Afro Caribbean/Irish mixed living in London Im looking forward to gaining knowledge and support through this online community

13 Replies

  • Hi Eveplate

    Welcome. I'm here a mum to my 13 year old daughter who has the condition.

    There's fab advice on here for every element of the condition that you can think of. It's been a real help and support for our family.

    Wishing you all the very best with your journey. 🙂

  • Thank you so much for you support

  • Welcome Eveplate.

    The first few weeks following diagnosis are the most bewildering. It usually gets a bit better after that in the sense that coping mechanisms start to kick in.

    This site offers a great support system and I hope that like me, you'll feel less alone and more reassured once you connect with others who are going through very similar experiences.

    All the best.

  • Brilliant thanks so much

  • Hi. Welcome to the club !

    Try not to worry about the bone marrow biopsy. ITP is a diagnosis of exclusion so you will be subjected to a lot of tests to confirm it. The good news is that you responded very well to IVIG. That means that there is an effective 'rescue remedy' available if your platelets should drop down to dangerous levels again. But be warned that for most of us its effect only lasts for 2 to 3 weeks. Don't despair though, there are many treatment options available and it's usually just trial and error until they find the right one.

    There are also many new treatments in development at the moment. Although ITP is a rare disease it is allied to other autoimmune disorders so we benefit from research into Rheumatoid arthritis for example. One final query - have you been tested for H-pylori ? If you have it it's a simple fix and can sometimes bring remission from ITP, particularly in some ethnic groups. Worth asking for sure.

    Good luck. Stay in touch. Life does go on almost as normal :-)

  • Thats super useful info thanks so much

  • Hi we all know what you are going through and will hold your hand whenever you want. My lowest count was zero. But i am still here and smiling. Take care.

  • Great news thanks so much for that

  • Hope you feel better soon

    Sounds like they are taking care of you!!

  • Yes and thanks so much

  • Its scary at first (I got rushed to hospital 15 months ago with a critical count too), take it a day at a time, do lots of research and ask your consult all and every question you're unsure of x

  • Thanks a million Zaff

  • hi x similar to me rushed in.i had2 platelets count lol !!! That was October last yr.

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