Any ITP patient , living without medication?

Hello every one.

Is there any body who has been diagonse with ITP and not taking any medication? and also having no symptoms of ACTIVE BLEEDING

i has been diagnosed ITP , from 4 months. i had no active bleeding nor any spots or anything. Just first time in my life i checked CBC on my dentist advice. after dental surgery. i was living normal life. since i m taking medicine for ITP i m sick. my mind is sick., my life is change so much.

i just wanted to know is there any body living with itp without any medicine .


40 Replies

  • You wrote :- ' Diagnosed with ITP '

    But what was your platelet count.?

    Mine is below 100 and all is fine, no problems whatever, no medicines.

    From the NHS website:-

    ' You are unlikely to have any bleeding symptoms unless the platelet count is below 20 or even 10... An operation is safe as long as the platelets are above 50 '

    Thus the questions are; who diagnosed you with ITP, are they a recognised ITP expert or full time heamatologist, and exactly what is your platelet level.??

  • Mine counts were 2 when i was diagonse itp. Still on 6 n like i said no active bleeding n yeah my dr is haemolotogist fulltime

  • My count is 49 I'm seeing a specialist at the hospital I do have a lot of nose bleeds brusing and spots on my skin

  • I have gone through all test hepatetis, dengue, bonemarrow antibody etc

  • Hi kwenda my plallet count is 49 I do see a heamatoligist I have spots on my skin very bad nose bleeds and I also have brusing all over my legs I have had it for 7 years I am still getting more tests done at my hospital

  • Is there any specific test for itp ?

  • You need to get a full blood count done at you local doctors

  • i did . but im asking is there any specific test for ITP

  • Your doctor can refer you to a heomtoligist specialist they can do more tests on you like more bloods taken urine and blood stool test

  • There is no specific test to determine you HAVE ITP. It is diagnosed by exclusion. It would be nice if there were a test to determine you have or don't have it.

  • I have tried steroid along with imurun n neorol immunosuppress drugs but not effect lik it rose my counts to 14 20 n back to 6, now im on revoalde 50mg a day from week along with same immunosuppress drugs , due to this heavy medicine m so much depress and my life is change my head is heavy dont know the counts at the moment

  • Have had ITP for 21 years now and don't have any meds. I have had steroids three times for GAs within that time, but apart from that, nothing. My count now hovers around 38.

  • yes. me too just wanted that my counts rise upto 20 atleast .

    i will quit medicine then

    its hell expensive medicine . REVOLADE

  • Hi, my count is around 47 no bleeds but i suffer from severe fatigue does any one else get this is and is there anything i can take to help? find long shifts difficult to survive

  • Hi Awsar I have itp for 7 yrs now I'm not on any medication just yes I'm still getting a lot of tests done at the hospital I have spots and very bad brusing try not to worry to much we can fight this there are a lot off support groups online

  • what type of test u r upto now?

    yes. moral support is the best cure for ITP

  • Hi I have had more bloods tests done a urine test and a stool test I have to go back to see my specialist in Dec to get a ultrasound done 😀

  • My count has been from 33 when I first found out up to 108. I found out about 7 months ago I have ITP. At the moment it's 52 I have not had any bleeding only severe bruising but have not had any medicines just regular blood tests

  • thats bravo of u. despite of severe bruising u r living without medicine

    Good luck

    May god bless u with health

  • Thank you I have heard so much about the medication they put you on how people are suffering with bad side effects just hope I don't have to take any be strong keep fighting this

  • My count is 49 but I have had brusing nose bleeds spots so I have been referred to see a specialist at my hospital which are doing more tests on me

  • Hi

    I only display signs of ITP (rash... bruises... blood ulcers in my mouth... no nose bleeds) when my platelet count has crashed (between 2 and zero). You might be like me... your body copes with a low count.

    Medication is rotten... especially steriods... but hopefully they will work and get your count up and stabilised.

    Good luck!

  • yes medication is rotten really. lets see m on revolade . my plan is to complete this course n after that i quit all medicine .

    n leave it on god

  • Hi

    It takes about 6 weeks for Revolade to show results. Once this happens... you could ask your doctor to control your count using only Revolade.

    I don't react to either steriods or immune system suppressants so, my count is only controlled using Revolade. I find the side effects of Revolade few and manageable.

    Hopefully this helps x

  • What if u stop revolade ? Ur count stable at certain point ?

  • This is my second episode of ITP.

    My first episode... after a few months my count was healthy enough to reduce my dose of Revolade and stop taking it altogether.

    My platelets have been slower to increase this time... but hopefully at some point I'll be able to produce enough platelets without the use of Revolade.

  • Hi I do suffer with the brusing badly I have nose bleeds I have a rash on my stomach hopefully I hope I don't have to take the medication but won't know until my tests results come back from my specialist at the hospital

  • Hello Awser. .don't worry too much. It seems ur count is low n ur body can cope with it. . try the medication but if it dsnt suit u . . leave it how old r u. . . my ten year old son is living with below ten for 8 years. . Needs transfusion in case of trauma.this condition needs care but be positive. . not bleeding is a blessing . .

  • m 28 years old,

    yes its blessing

    Hope that god bless u all

  • Be strong all of you think positive and keep fighting 😀😀

  • You should discuss stopping your medication with your doctor BEFORE stoppiing. I've read you can have worse counts stopping. Let your doctor monitor your counts after stopping to be on the safe side.

  • Yes definitely i will consult my dr to tapper revolade

  • Yes I have had low platelets for a year; doing lots of vitamins C, B, K and fish oil with no medication -also Vitamin D is helpful but I have not been refilled on that -still awaiting . Tired out most days, fatigue all the time -I try to de-stress and get some rest.

  • Good luck

  • Good luck

  • I have a platelet count currently of 13k. I had tried steroids, IVIG, revolade, dapsone but the side effects were very bad. For the last 2 months off medicines and no bleeding. Doing some yoga and breathing exercises and that is helping.

  • Thats nice to know that yoga n exercise is helping this

  • Usually my counts will be below 20 and most of the time below 10. I am not actively on medication since nothing worked. 3 or 4 Revolade tablets ill take before periods just for moral support. I don't go for frequent blood checks as i will know the count when i get more bruises. If you are not bleeding actively you can be off of medicines and anyway unexpected injuries we cant stop it if it happens!!

  • Yes girls have peroids issue thats y u need medicine ,

  • Hi,

    My son's count was 3 when he was diagnosed with ITP. He was taking high steroid doses for four days at a time. They worked and raised his levels to about 70, but only for three weeks at the time. After 3 month I took him off any medication and it has been almost a year, when he is not taking any medications. His levels are stable at 10-14. Very low. However, although he does bruise and shows petechiae, he does not seem to have excessive bleeding which is why I keep him of drugs. I felt they were doing more damage then good. I am trying various diets (naturopath). So far, nothing helps but he is fine. Tired but fine. I should mention he is 18.

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