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Thread: Thrombocytopenia

  1. #1
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    Default Thrombocytopenia

    Hello everyone
    I was wondering whether anybody else had had a diagnosis of ITP or idiopathic thrombocytopenia purpura?
    It was the first major symptom i had that led my doctors to diagnosing lupis.
    In March, i began to develop huge bruises over my arms and legs, so i ended up going to my GP about that, and about some joint pain i had in my hands. He sent me off for blood tests. That night, i got a call from my doctor telling me i had to go to emergency at a hospital straight away as my platelet count was only at 4000 (where it is meant to be over 150 000). By the time the hopsital re did the blood tests that night my platelets were at 0. I was given a platelet transfusion in emergency, then the next day when i was on a ward i was started on 80mg of prednisolone. I then had 3 days of immunoglobulin through IV. The haematologists there told me i had ITP.
    Anyway, i was sent home on prednisolone 60mg per day, and since then i have had blood tests once a week to check my platelet levels to see if my pred can be lowered.
    Fortunately, today my platelets were at 233,000 on 15mg of pred, so i have now been lowered to 10mg per day. Hopefully i can be off pred completely in a couple of weeks.
    Anyway i was wondering if anybody else had had problems with their platelets? Its kind of scary when the doctor tells you with no platelets you could bleed into your brain and have a stroke...nice doctor hey...
    *~* Monique *~*

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    Default hi

    Oh Wow,

    How scary for you.But great news now hey! Im sorry ive not experienced this,and yes its does sound scarey...but the good news was you had a good doctor who looked after you.Lets hope you continue to be well.....you know what i mean...platelets stay good.
    Lots of love
    Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Default

    hi monique,

    what a scary time you have had. I don't have experience with ITP, but i am so glad that your dr. discovered it and made sure that you got the treatment you needed.

    Hopefully, someone will be along with answers for your questions. Please take care of yourself, and keep us posted.
    Phyllis

    share a smile today

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    Default

    Hi Monique..

    Wow, words like that from your doctor would instill fright and fear. I know doctors don't have much skill in bedside manners. I assume they feel it is better to be direct then beat around the bush. I am so grateful they diagnosed it and you received the proper care.

    How are you feeling today?

    I don't have ITP....I don't recall it being mentioned from anyone...but many have had low platelet counts, but I don't recall that low.

    I will be praying and wishing you will be off the steroids too...a few weeks can't come soon enough, eh?

    Enjoy this day..I am.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Default

    Hello! I too have ITP and lupus. Below is the my 1st tread. My platelets have been stable since October. The hard part is predisone causes easy bruising so at first I was always scared my platelets were dropping. I also had 6 sessions of IVIG and a platelet transfusion. I hope your platelet number stays stable. Please feel free to contact me anytime.

    Good luck and take care, Deb

    Tomorrow it will be 1 year ago that all this started.

    ================================================== ==================

    HEllo my name is Deb. I am 36 years old and was diagonised in June 2008 with lupus. I had some unexplained bruising and red and white spots. My local doctor did a blood test and the next day I was in Methodist Hospital in Rochester. My platelets were at 4,000 (normal range would start at 150,000) I was hospitalized twice as in patient and once as an out patient to try to get me platelets back to normal. And dozens of trips back to Mayo Clinic. I was started on a 110 mg of predinose and eventually tappered back to 20 mg by October, today I am at 7.5 mg. I am also taking 400 mg of plaquenil, 1500 mg of cellcept, 1000 mg of tetracycline, 10 mg of Ambien and calcium, Vitron C and multi-vitamins. When my platelets went back to normal I thought everything would be fine ~ OH MAN WAS I WRONG. I have been dealing with extreme faitgue, headaches and joint pain. I really feel all alone. So I am hoping this web posting will help me talk to people that understand. Thank you very much for taking the time to read this, I really apprecaite it. [/b]

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    Wink Me too

    My lupus also started with ITP. I went to a walk in clinic with huge bruises on my stomach, legs, and in my mouth. After explaining that I was not being abused by my husband blood tests revealed my platelet count was 2,000. The nurse practitioner was scared and said she ran my blood twice because the first time it was 0. I had no clue what this meant, but they told me I had to get to a hospital right away and if I did not have someone to pick me up they would have to call an ambulance because I should not be driving or alone. They proceeded to tell me I could be bleeding internally. Talk about scared the sh** out of me! This was just the beginning of 2 yrs with ITP, Lupus diagnoses did not come until 2.5 yrs later. Initially I was treated in the hospital with Decadron (it is like prednisone x3) I was released to the care of a hematologist once my counts were back into normal range. I was stepped down on dosage to none. But a month later ITP returned. I did two more rounds with predisone and after a miscarriage decided to have a splenectomy. Immediately after my platelet count was increasing while my prednisone was decreasing. I have been in the upper 300,000 ever since . Message me if you have any more questions.
    Hope this helps...

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    Default

    Thats what my doctor said to me in hospital - you could be bleeding internally or into your brain and have a stroke. They wouldnt even let me move to the private hospital on the other side of the street because they said it was too dangerous....so i had to stay in the gross public hospital for 5 days!! Was not happy lol. Why do doctors have to tell you the worst outcome of everything to try and scare the hell out of you!!!!
    My hematologist did say when i had my first appointment with him that if my platelets didnt go up with the prednisolone decreasing then he was firstly going to get me into a drug trial that is running at the moment, then if that didnt work i was going to have to have a splenectomy...thankfully thought, I am now down to 5mg, and my platelets are at 230,000. This time next week i should be prednisolone free, and i am sooooooo looking forward to that!! We will see what happens when im completely off though...
    *~* Monique *~*

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    Default

    I also suffer from low platelets. Which has led to HUGE issues after my last surgery. Aside from getting a staph infection, I have two incision that refuse to heal because I have no platelets. I usually take platelets every other monday (as needed). It does get better I promise!!!
    A good friend will help you move, a GREAT friend will help you move a body . . . Let me know if I need to bring a shovel!!!

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