Need advice please, its urgent, only 10 thousands platelets, I am a new patient of itp

On 16th Nov. 2015, I have been diagnosed as an Itp patient with only 3000 platelets, after 2times transfusion of platelet in 48 hours I have 40000 platelets, on 18th Nov. My dr. Advised me to take 35 mg prednisone per day. After 2weeks of taking 35mg/ day prednisone my count were 0.4 million. After that my dr. Advised me to take 25mg then 20mg then 15 mg each for two days and 10 mg for 14 days. After 3 weeks my count were 0.26 million. Then she advised me to take 5mg each day for one week n then 5 mg on alternate days for one week. After two weeks my count were 0.25 million. Then she advised me to take 5 mg after two days and today (after 7 days of taking 5 mg after48 hours) on random check my count is only 10 thousands. On 5.1.16 it were 260 thousands and today it is only 10 thousands (with no symptoms). I am so afraid. What is this, why my platelets dramatically down and what should I do now. I can visit my dr. after 1 week cuz she is not here in my city. Please advice me what should I do now, should I admit in hospital and do transfusion or stay home and do pray and take prednisone tablets or . . .?,??

Please guide me, as I am very new in itp and my dr. Is not available at the moment. Your experience may give me a sigh of relief.

Thank you all in advance!

15 Replies

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  • You may want to start taking your prednisone again and go to the hospital and have them treat you with an infusion to get them up quickly. Since you had good counts on the steroid you just may need to be on it a bit longer. I could never get good counts like that on it. Prayers to you.

  • Thank you for your reply n prayers, since I was unaware how to treat itp. I took 15mg prednisone and will visit to another dr. Today

  • Good luck to you. Keep us posted!!

  • Ok My start with ITP. 6 months ago. 3 hundred thousand was given platelets within 6 hours all were gone so still 3 hundred thousand. Was put on 100MG Prednisolone daily and 2 x IVIG transfusions. Numbers improved to 2 hundred thousand. Stayed at 100mg for two weeks then reduced each week by 20mg. Until down to 20mg a day. Then 10mg for a week then 5 mg for a week. Jumping around with these different doses levels is slily. (My count fluctuated wildly got as low as 48 thousand when reducing Prednisolone.) It wont give you a chance. Numbers are usually counted in hundred thousands not point of millions so try to write it that way as can be very confusing otherwise. Normal range 150 000 to 400 000. In Australia they usually only treat you if you are actively bleeding. There are people I know of who have everyday counts of under 10 000! They are still at home just being cautious. If you start actively bleeding seek medical help. Get a Haemotologist and at least a dr who knows more about what to do as yours seems to be unaware of how best to treat you. Most important DO NOT STRESS! It will make it so much worse. Read and research everything. Teach yourself about your condition. We are here. Take care

  • Thank you for your reply, sorry for the inconvenience. 0.4 million mean 400k, then 260 k and now last night I have only 10k with very little bleeding through mouth

  • This is quite normal and I have seen that it takes some time for your p,athletes to stabilize. It may not get back to normal but anything around 50k is ok for a normal life. Also if steroid do not help then the doctor may give you some alternate medicine and you may have to go through some trial before you arrive at a suitable dosage and medicine that will work for you.

  • Mine are now running between 20-40k; I have no meds and have a normal life. I think Sailor who posts on here has a count of about 10k, no meds, and travels for work. I'm told not to worry about it til I get to 10k, then they'll give me meds.

  • There are many different treatments you will be offered. Steroids is only one. If you are bleeding then my advice is to go to hospital. Nicky

  • With a low count like your I would go straight to the hospital.... but when there low you have to take extreme precautions. Well have been thru that roller coaster ride with the prednisone your not alone take care

  • Dear Umar kindly let me know where do you live.

    And about ur situation no need to panic when I was diagnosed with Itp my count were only 2k with 60mg Predisone.

    If ur doctor is not available for a week, why don't you visit another?with ur recent records they will help u.

    And this Itp is just like a roller coaster ride.it keeps changing from person to person and the same way with the platelet count.

    But keep in mind ITP is Conquerable have faith.

  • Thank you dear, I am from Lahore- Pakistan. Today I have an appointment around 3pm with a private dr. Problem is here in lahore 99.9% people don't know about itp including drs. and they don't guide in details. Anyhow good thing is that online help from you people is a great relief. If online communities are not available or inactive then it will great problem. Thank you all people for sharing their experiences.

  • No need to panic. I went through almost the exact same series of numbers as you when I first was diagnosed with ITP. Now, 25 years later, when I have a count less than 10K, I usually tease the technical that the count is within the margin of error of zero. (Hope you can see the humour.) Shocking the system with prednisone is often the first attempt at treatment. Normal platelets in a normal person only last about 48 hours. With ITP the time is shorter. Transfused platelets are destroyed very quickly as well. So transfusions are often reserved for cases where there is active bleeding. Each person is different and reacts differently to the drugs available. When under 10K, I stay at home avoid bruising and watch out for other bleeding. I agree that it is wise to increase the prednisone a little, get another count, and see your doctor as soon as he is available.

  • Thank you Robert for sharing your experience and views, hope it helps me. Today I will visit dr. and will write the updates here. Need lot of prayers. Thank you all.

  • Dear all, yesterday i visited two different hematologists. One dr. Advised me to inject Solumedrol 100 mg (6 injections, one in one month)

    While 2nd one was my old hematologist, she advised me to take 10 tablets of Prednisone(50mg) for 5 days + 1cap. Tranxamin(to prevent from bleeding) and 1tab tenurmin (50mg, for blood pressure).

    Last night I have only 1 k with full bruising and little bleeding from mouth and a bit from nose

    Problem is injection is out ov stock here in Lahore so I decided to take 50 mg prednisone, now after this post I m going to take this high dose but I am very worried if prednisone fail to work then what will I do?

    Weekend start here and no dr. Will be available during weekend, if I have any embergency what should I do.

    Kindly do share your experiences also how much time prednisone take to react on the body, means till when I can wait whether prednisone is affectful or not?

    I am in great tension, your experiences will help me alot, any alternate of solumedrol injection?

    I may take Vitamin c or not, one dr. is saying yes other is saying No?

  • can you contact me at 0321 4699135

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