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Anyone had three separate instances of Acute ITP and no more? 8 months 3 days ago #70989

  • Vicky14
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I first had ITP aged 15 (1993)...platelet count 2 (UK numbers... think that's 2000 in US money)...after a couple of weeks in hospital with steroids and sandoglobulin I went home...I was slowly tapered off steroids over many months and all good. Normal platelet levels for 5 years. Then another episode (1998)... this time 0 platelets...same treatments...all good again...then a year and a half later another repeat....i've been 22 years without any further incidents of ITP. Wondered if others have had a similar experience of ITP...a lot seem to be chronic....would love to hear from anyone that's had two or three incidents and no others. Would be interested if any theories as to what might cause the incidents.

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Anyone had three separate instances of Acute ITP and no more? 8 months 3 days ago #70990

  • Dave
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  • Diagnosed October 18, 2011 Bloomington, IL
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I had 2 instances if I remember correctly where I bruised really easily, and 1 where a minor cut took way too long to stop in the 6 years prior to my only ITP diagnosis. That was completely abnormal because it takes a lot to bruise me and cuts had always stopped bleeding with no issues.
I never saw a doctor or thought much of the unusual bruising or bleeding after healing. I participated in contact sports during that time frame with no problems so it was not a consistent issue. I went to a doctor 9 years ago with red dots everywhere and ridiculous bruising. I was diagnosed with ITP and hospitalized with a count of 1. I was treated with Prednisone and IVIG and released 5 days later when my count jumped from single digits to 42. It has been over 150 every draw since, usually over 200. I don't know what caused my ITP, but I did test positive for H Pylori a few weeks after ITP diagnosis. I eradicated it with PrevPack.

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Anyone had three separate instances of Acute ITP and no more? 5 months 2 weeks ago #71414

  • jessmeyer
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Me! I was first diagnosed in 2012. I was treated for 9 months and then spend 7 years in remission. ITP came back in 2018. Treated for 3 months and then spent 2ish years in remission. Just got tested today, and ITP is back again. I wonder if my remission time will keep getting shorter and shorter until I just have low counts all the time?

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Anyone had three separate instances of Acute ITP and no more? 5 months 2 weeks ago #71426

  • Vicky14
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Not yay that it has come back, but yay there is someone else! Sorry to hear it has come back, do you have any idea of possible triggers? I think from reading, it seems that about 5% of adults have relapsing acute ITP....so hopefully that means you will get back to remission. What are your counts each time you get it? I have read of people having very long remissions of 20 years etc and then it comes back, but i guess if it responds to treatment each time it's good. Was it covid vaccine that possibly triggered? I hope you have a speedy recovery and a long remission. My remission between 2nd and 3rd episode was only 18 months and I thought rest of my life would be relapses every couple of years, but then never had another, so I had the same wonder ing as you and my fear didn't come true, so hopeully you'll be free from it for a long time. Good luck with treatment

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Anyone had three separate instances of Acute ITP and no more? 5 months 2 weeks ago #71435

  • jessmeyer
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I hear you! I am glad you went from a short remission to a long one. There is hope!

I don’t know about triggers, but I do have CVID. That makes one prone to develop autoimmune diseases and is likely how/why I ended up with ITP.

My Hemo actually mentioned the vaccine piece today. I had my two doses in April. She mentioned that she has had another patient see platelet counts drop a few weeks after the vaccine. She was super clear that she was not saying the vaccine caused it, but it might be something they will / are researching.

The first two times, my counts were undetectable at the lowest. I seem to either have normal counts or no counts! This time, I was at 16k on Thursday. So, that is obviously better than 0. My Hemo wants to monitor for a few weeks, if we can (counts don’t drop, no active bleeding, no new symptoms). I have a Dex prescription to start if any of those things were to happen and am getting labs on Monday. If the counts stay the same, get worse, or other symptoms start up, she is going to schedule another round of Rituxan. It worked the last two times, so I feel oddly at peace with things at the moment.

When in remission, I feel like the idea of ITP coming back is always at the back if my mind. Now, it is back, so it takes away that anxiety … if that makes sense.

Best wishes for your continued remission!!

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Anyone had three separate instances of Acute ITP and no more? 5 months 2 weeks ago #71447

  • Vicky14
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Yes, totally get that it's always at back of mind, and sometimes dealing with it is actually easier.

Although after finishing outpatients appointments I tend to completely forget about it, after being in a french hopsital for 2 weeks with it, a few years later I went to the US without specific travel insurance as had totally forgotten about it. It's only vaccine and a friend having similar treatments for another illness this year that has made me think about it again. Feel if I totally forget about it, that's when life will swing a curve ball and give it back to me.

Sorry to hear about CVID (had to look it up), do you find it is affected by stress at all? I think my 3 instances of ITP, stress was probably a factor. I heard an interetsing view on stress other day by a GP....we each have a threshold....says it's 20 stresses, the last stress (making total 21) can tip you over the threshold and make illness likely to occur...we often look at the last stressor as a culprit but it can be all of them combined.....I think I've always been trying to find the common stressor, but I think it was probably I had reached my threshold and it wasn't one particular stressor but a combo (e.g. poor sleep can be one, poor diet, etc etc)

I don't know with age if I'm a little more careful with stress or if my immune system has improved with age...who knows

I also have normal counts or no count, hope the treatment works speedily and you have a super long remission.

When I had it a third time, I asked my hemo, if he'd had any other patients that had it three times and no more, he said he had one male patient (don't know if he was making it up to give me hope) but I left telling myself I will be his first female patient to have it no more than three times!

Hope you don't get it again and we can be members of the three times only club!

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