Newly diagnosed with ITP

Hi everyone

I have recently been diagnosed with ITP after suffering with just a few what I thought were normal bruises on my arms. A work colleague insisted I see my GP. After a blood test, I received a call to go directly to hospital to see consultant. Two weeks later (yestetday) I received my diagnosis. My count was 27, and dropped to 25 five days later. No treatment has been given. I'm really concerned as been told to go back to hospital if symptoms change. What are the symptoms, what do I need to look for. Any information for a newly diagnosed very worried lady would be very much appreciated. Thank you

12 Replies

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  • If you have nosebleeds, or are bleeding from any other part of your body you need to go directly to the emergency room. I have had ITP due to lupus for about 6 or 7 years, not on treatment. My lowest count has been 38. This went on for several years, and last time about 6 months ago it went up to 78. Be careful not to bump your head, intracranial bleeds are VERY RARE, but they can happen. Just be aware and don't do any contact sports. Have you been referred to see a hematologist? I went for a consultation with one and it was just we will wait and see how it goes.

    I know its scary, but just be aware that's all. Bleeding gums, nosebleeds, large bruises, blood in urine or stool, look out for those symptoms. I have lived with ITP for years and have never been on treatment, and never really experienced symptoms except for bruises here and there. What is the plan for your course of treatment?

    Keep in touch if you would like. Will keep you in my thoughts.

  • Thank you for reply.

    I have seen a hematologist twice who said my count was severe at 25 but symptoms mild so no treatment was best as the side effects would be worse than the itp. I had a chest x ray, and am waiting for a brain scan and a tummy scan. I just get a few nasty looking bruises here and there, no bleeding from anywhere other than the odd accidental cut which I've managed to stop after a while.

    So I suppose I'm quite lucky compared to some. I think it's the lack of understanding, the shock of diagnoses and the fear of what could happen.

    It's nice to know that people are in the same boat and have itp with no treatment.

    I would very much like to stay in touch. Thank you

  • It is good you saw a hematologist. I go by symptoms and not numbers, that is why I haven't been treated. The diagnosis is a shock I know, but there are a lot of us here in the same situation, so we all feel supported. Platelets fluctuate as well. Just remember to be aware, as I think we all know our body better than anyone else.

  • Bruising, small red dots on your skin, nose bleeds and blood blisters in your mouth.

    I don't get any symptoms until my count is around 10-15, but I don't bruise easily normally anyway. I would consider 25 a good count, when I was diagnosed I had 3.

    Good luck, hopefully it's just a temporary blip in your immune system!

  • I personally suggest that you don't need to take treatment unless you bleed from gums/ nose/ urine or stool.

    Don't be panic, try to live healthy and happy life. For detail you may visit pdsa site.

    Stay Blessed...

  • Hi I'm impressed with your doctors to do the wait and see as taking steroids is horrible re side effects. I had a count of 7 when mine started a year ago. I'm now at 89, the count has dropped a little but it's still a very good count. I started with all the symptoms of nose bleeds, blood blisters all over and in my mouth, 27 bruises but they have all gone now and I'm steriod free. I see my haematologist every other month but hopefully I will have another good count next month will be able to go longer without seeing him.

    Keep posting, everyone on here are so helpful and there are some that have had ITP for over 20 years with a low count and no meds.

    I hope all will ok with you without meds.

    Take care

    Lin

  • It can be very scary to get this diagnosis! When I got it 20 years ago I was in panic. But since then I've been through a long journey, including a few treatments and a remission of 9 years long. The science has a lot for us with ITP these days compared to 20 years ago, I personally feel quite secure because of that. It's a good idea to not jump into treatment unless you have severe bleeding as many advised above. Hope you get back to normal without any intervention at all. If the treatment is required, they'd try steroids first. However, these have very unpleasant side effects and if they don't work you have all rights to ask for the second line of treatment and so on.

  • My lowest count was 0. I had petechiae at that low count and knew to go to hospital. You will get used to your body and be able to read the symptoms. I had bleeding in my gums where it was only a steady seepage but it kept me awake all night. It is very scary and i wish you all the best. Nicky

  • For the best info in the US see pdsa.org

  • Hi Lynne

    Im a 53 year old and have had itp since 2011, it doesn't affect my life too much. I'm lucky because I don't seem to bleed. My hematologists have been really good and we have got to a point now where I only have treatment when the count is below 10. I am very responsive to steroids and just have a small dose for a few weeks to bring it back up again. I know when the count is low because I find small black bruises, have bleeding gums when i brush my teeth and see blood blisters in my mouth. This I often after a viral illness. I just try to be watchful for these symptoms and would seek advice if I had a bump to my head. Its always better to get my count checked if I'm worried. Hopefully your experience will be similar to this and you will be able to get by with a minimum of treatment.

    Regards. Janet

  • Sorry this has happened to you. I had two scary events over the past 7 years with a count of 2 when I experienced petechiae on my lower legs. The first time the problem was resolved with prednesone treatment and a week stay in the hospital. The second time I was not so lucky. I was treated with decadron for nearly 7 months and the platelets dropped whenever the steroid was stopped. I then had chemo Rituxan infusions and now my body is not killing off the platelets. It is important for your doctor to know the cause of your ITP. It is too easy to throw solutions at a problem without knowing root cause. Best of luck to you.

  • Hi Lynne36 I have just had a email saying that you are following me I see your post went out a month ago hope you are feeling better try not to worry I know it's easier said than done ,I use to have a few bruises and nose bleeds but none of late last blood test about a month ago platelets 165 , but low and behold today a had a nose bleed not much but don't know if it's to do with platelets I am due to have a root canel on Friday so I am going to have to contact the doctor hopefully do a blood test wishing you all the best .... Angela

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