Itp came back: hi, I'm new to this site... - ITP Support Assoc...

ITP Support Association

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Itp came back

cristinanicolep
cristinanicolep

hi, I'm new to this site but wanted to know if anyone else had itp that came back after years of having high counts and on no medication. I was diagnosed when I was 11, my platelets were at 7, and then after a year they went up. Now I'm 18 and my platelets have been dropping, going from 230 to 44. Everytime I go to get my blood checked they seemed to have dropped. Just wondering if anyone has experienced this and if they did what did they do?

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I haven't had that happen to me (yet), but it's something my haematologist said is more likely to happen than not. I don't know if it's a comfort to know that a relapse isn't unusual, but at least your doctor should know how to handle it. I hope you back into remission soon!

Ruth

Happened to me few times, i am 33yo, but my drops were sudden and drastic, i went from over 300 to 0 in two days..its tough..you can take corticosteroids- i dont like those and i am not a doctor but wouldnt recommend those for a long run, they do more damage than good especially when you are so young, but they should up the numbers and sometimes numbers stay high for some period of time, ivig is pretty good and fast, but lots of people say that numbers dont last long, for me sometimes they do..eltrombopag(revolade) and romiplostim(nplate) only made things worst for me, but some patients can stabilize count with these pretty good i heard, splenectomy is also an option if you end up in a endless loop with numbers going up and down, i was splenectomised when i was 20yo, and it gave me 5 years of peace without any meds but this is pretty hardcore solution..ultimatively last time i had low counts(0-5) i did nothing and wait it out at home..it took me almoast two years till my count get better. now i have over 400trc and i have been ok for year and a half

Hello cristiancoqep yes sadly ITP can come back at any time. It can also develop in anyone at any time at any age. For general, helpful information I have attached a few links below which will hopefully be of help to you -

1. The ITP Support Association (UK) - all about ITP - itpsupport.org.uk/index.php...

2. The ITP Support Association (UK) - a list of current ITP treatments - itpsupport.org.uk/index.php...

3. The Platelet Disorder Support Association (USA) - all about ITP - pdsa.org/patients-caregiver...

4. The Platelet Disorder Support Association (USA) - Treating ITP - pdsa.org/treating-itp.html

5. My ITP blogs - A) myownpurplepatch.simplesite... and

B) anthonypaulh.tumblr.com

I am based in the UK and have been living with ITP since July 2006.

Hope all this helps.

Best wishes

Anthony

Hi Cristina,I am 60 and had crashing platelets for 8 months until I got rid of undetectable parasites. I got ITP April 2017 when I returned to Colorado from a trip abroad. I will paste detail of my ITP journey below. I hope you might be able to erradicate the underlying cause like I did. But I know sometimes it just is what it is. Good Luck and keep me posted.

My ITP Story with a great ending!

On April 2017 I was first diagnosed with ITP. My body was full of bruises and my platelets were 7,000. It happened within weeks after I returned from a trip abroad where I road horses and did water slides in the jungle. I developed life threatening, crashing platelets so bad that for 7 months I needed IVIG every 10 days along with daily Promacta, Steroids, etc, (except for the month I was on heavy duty antibiotics). The PDSA website was absolutely wonderful helping me sort through the very bad news I was dealt that my life would be forever changed and ITP was my diagnosis. There was one post by a Christina who pointed me in the direction of a possible cure like she had. (Thank you Christina) She spoke of hpylori causing her ITP and once she received triple antibiotic therapy her ITP was cured. Her hpylori was eradicated and her body no longer had the hpylori that was triggering her body to produce antibodies that would then mistakenly attack her platelets instead of the hpylori. I thought this must be what I have and sought out to prove that hypothesis.

Unfortunately hpylori was not my problem but still I was convinced that something foreign had triggered my ITP and I was going to find it and get rid of it. Well, not so easy. In summary, I spent several months trying to rid of whatever foreign organism made my body its cozy home. It was VERY difficult to find the foreign culprit, I came up empty handed after many negative stool cultures, blood tests and even a trip to a well known clinic. I was actually giving up and resigning myself to the fact that I would live with ITP for the remainder of my life.

This is when my guardian angel friend convinced me to get ultrasonic treatment and take parasite eradication medicine to kill parasites (remember there were never any parasites found) and to go to a medical professional who used an Avatar Machine to determine what homeopathics would rebalance my system and help with slow tapering of Promacta and Prednisone. And believe it or not, it worked! I got well within one month after these two treatments and homeopathics and never needed IVIG again. I am ITP free since October 2017.

October 2020, I celebrated my 3 year anniversary since my last IVIG which was on 10/16/17. It has been about 2.5 years since needing to do Promacta, prednisone, etc.

I spent 7 plus months dealing with ITP: life threatening crashing platelets, steroids, Promacta and IVIG and I know how difficult it is. I am sending you all my good thoughts and strength as you navigate your ITP situation. Again, I know this might not be helpful to many of you but just in case anyone can benefit from my story, I am wanting to try and help. Please reach out to me with any questions or comments.

Thank you, i really appreciate that you've written this. It gives me hope to finding a cure!

Hi cristinanicolep, I am so glad to get your message and I hope that you can figure out a way to treat an unidentified bacteria, virus, parasite, fungus, etc and rebalance your immune and adrenal systems. etc. I was so discouraged myself once and I am here to answer any questions you have. Sending great healing thoughts!

Cindy

I am using caripill tablet with wyslone steriods.giving good result.but without doctor concern.

any symptoms i am also suffer from ITP but i dont have any symptoms

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