ITP Support Association
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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 .

thanks:)

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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.??

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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

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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

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Sounds like me : )))))

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Hi Julie,

My platelet count is 60000 and i do have brushed on my skin. Moreover, my haemoglobin is 7.8, please suggest. Also, i am only taking haemoglobin medicine and vitamins.

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

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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

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Is there any specific test for itp ?

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

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

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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

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If the ENA ANA and DS DNA test are clear means u have no antibodies in your blood that destroy platelets. and the platelets producing cell in bone marrow is abnormally enlarged ,it means that we r diagnosed with itp

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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.

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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

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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.

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

i will quit medicine then

its hell expensive medicine . REVOLADE

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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

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I was on vitamin d for While which helped with the fatigue

I partake in various activities to relieve stress -yoga, church, etc

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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

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what type of test u r upto now?

yes. moral support is the best cure for ITP

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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 😀

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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

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

Good luck

May god bless u with health

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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

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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

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Hi Julie.

Did you you ever get an explanation of why you have had quite bad bruising and bleeding even though your count is 49 ? When I was first diagnosed with ITP about 8 years ago I have nose bleeds, bleeding gums, bruising and red dots. Cuts and scratches would bleed and bleed. But my count was around the 70 mark. Now my counts are in single figures but the symptoms are far less severe. I can't understand it.

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Hi /prudencepayes i have not got my results yet from the specialist have to go back to see him on the 30 December so hopefully all will be good I'm hoping I'm not sure but I do think your plallet count can go up and down I haven't had much brusing lately and my nose bleeds have stoped so I do hop it's good new thank you for asking I'm glad you feeling better in yourself

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Yes it all come down to my itp but having less nose bleeds and bruising which is a good thing

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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!

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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

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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

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

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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.

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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

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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 . .

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m 28 years old,

yes its blessing

Hope that god bless u all

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

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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.

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Yes definitely i will consult my dr to tapper revolade

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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.

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Good luck

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Good luck

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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.

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Thats nice to know that yoga n exercise is helping this

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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!!

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Yes girls have peroids issue thats y u need medicine ,

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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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Me. I have had a diagnosis of ITP for over 14 years. When I was first diagnosis, I was treated with steroids, then I had a bone morrow biopsy, then I had a splenectomy and then I was treated with each drug that was available for ITP patients. Nplate was supposed to be the one that fixed me. When it failed to work. I quit all treatments. I could not handle being a walking science experiment. I felt awful and my quality of life was terrible. 5 years ago it was in the 20-30K range. I was Asymptomatic. 2 years ago, I tried Nplate for 9 months as a what the hell, lets see, last chance. I have held steady for over a year averaging around 75k My last cbc was 82K 2 weeks ago.

My rule of thumb is if I am asymptomatic and my count is stable and above 20k, I see no need for any treatment.

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Thats great to hear :) . My counts are are below 10 . and i am asymptomatic too. thats why i quit all medicine . lets now. i have tried steroid , transfusion, revolade , but i m not going for removal of spleen

Only problem with me is that my head is feeling heavy all the time. minor fatigue sometimes.

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I've had ITP for 38 years. My normal is 20-125. My first major relapse was last fall (my fault. I had gotten sick with a cold that required antibiotics and I didn't think about the fact I can only take some kinds of antibiotics and I was put on the wrong one and didn't pay attention). After that, I had 6 weeks of steroids and rituxan which got me back to normal. My platelets are higher then my normal right now still but they are slowly trickling down again to my usual normal. Other than this isolated incident, I am careful, but live on no meds otherwise. You can do it!

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Hello there, I have had ITP for the last 34 years, and do not take any medication at all for it, however I do have to take medication as I had my spleen removed so as to help combat infections. I have had major surgery and at these times was given a transfusions to boost my count, which runs about 20 - 25, I do bruise if I knock myself, and bleed a lot from a tiny nick from shaving. In my case having ITP has not affected me from leading a normal life, apart from not doing any contact sports. I hope this helps.

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Same here . i have tried all medicine. Not from a month and above i m not taking any medicine .only bruise when i rub my skin forcefully

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Hello , I got diagnosed on December 2016 ( still under investigation ) no medication just weekly blood tests I completely trust my hemotologist and we have a SOS plan my platelets never been higher than 60 at the moment 46 I have random nose bleeds for about 30 minutes of an on I also get the purpula at the moment on my eye brow .... someone said to me on this site do not get hung up an platelets and itp it is so right take care .

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Hi there. I have had itp for the last 6 yes. My platelets seem to sit around the 100 / 130 mark so no drastic affects. The lowest i know they've been is 96. I'm not on medication and drs don't seem that interested as it doesn't affect me drastically. (That i know of!) I get tired slot and bleeding gums and bruises sometimes - and then i know my platelets count may be down a bit. I guess just keeping an eye on your count is key? You may not need any meds... X

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Hello I have nose bleeds the little spots all over no meds just monitoring and a SOS plan it is fine as long as you listen to what your body tells you I have learnt my triggers now : ))) one being fatigue then I think here we go again : ))))

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I now have mgus a papaprotaine in my blood

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Yes I am 61 years young and I have had it for at least 8 years. I do not take any medication for the ITP. I have Iron Treatments because my body doesn't store iron. The lowest my platelet have been is 65,000. But the best I have found is to stay away from Toxic environments. being exposed to lots of chemicals is a reactor for me. I worked in a bus garage in Chicago and I was continuing to get sick, sicker, and then I had to leave. So as much as anything eat clean, and stay away from chemicals as much as possible.

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Kwenda, I had bleeding when I was 65000 and I had to have 3 units of blood.

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