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Advice, insights, etc :) 5 months 3 weeks ago #72568

  • autumnlsmiles24
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Hello lovely friends
Sorry this is a really long post.
Background:

Firstly, I am so far in my journey not 'chronic'. I have had (that I know of) 3 acute episodes. First one was at 18 years old, following a men C vaccine (symptoms were just feeling very malaise, and petechiae on my chest in clusters, noticed over the course of a few days) I eventually went in to hospital, on the basis that I just felt 'weird', and my platelets were 25k. They didn't treat me, just watched me over night, and discharged without medication, following up with a healthy count a few weeks later and until…

Second episode was October last year (11 years later), contracted covid and after a couple of days of fever and starting to feel better, I noticed a large blood blister in my mouth, petechiae on my feet and legs, and was coughing a small amount of blood (from my throat I believe). I went to hospital- count of 3k, platelet transfusion/prednisolone, kept for 4 days and discharged at 57k (platelets remained stable, and I had a successful taper in January)

Third & (I really hope) final- flash forward to today. I caught covid again a few weeks ago...was very anxious about this of course given the last time. Got through the first couple of days no problem, and the morning I was again feeling much better...I noticed the TINIEST bit of petechiae on my chest...almost invisible. So much so that my boyfriend told me not to worry and just try to sleep. After the last experience, I felt so incredibly anxious that I took myself to hospital anyway, and my platelets were at 4k. I was given 4 day Dexamethasone only (I seem to respond well to steroids) and so far my platelets seem to be recovering.
Over the past 9 months since the October relapse, my platelets seem to average at around 170k.

Now my questions!
Had I not noticed these TINY petechiae a few weeks ago, would this have been a disaster, or is there a good chance I would have recovered? I felt totally fine otherwise, no other bleeding symptoms, fever, etc. I seem to see that there is a distinction between 'bleeders' and people who get very low without many symptoms. I know that serious things can happen under 5k, and it is not necessarily worth taking the risk to stay at home and wait…but I would rather not have to spend days at a time in hospital, on the steroid treatment which had been quite harsh on me (have since developed very severe skin issues, lost a lot of hair, and the emotional side effects of not only the prednisolone but also as I’m sure many of you know, being in a hospital environment).
My biggest concern of course is that I seem to go very low before any symptoms appear, though my haematologist advised that this should perhaps be considered a good thing, as there are other components in the blood that create stability to prevent bleeding!
Does anyone else have experience with these low numbers/little symptoms?
I fear I am starting to become obsessed with numbers, instead of being able to focus on how I feel.
Are there others who only seem to experience drops like this when there is some kind of external immune stimulation involved? What are your patterns?
How do you feel anxiety can contribute to these episodes?

The other question would be about medication, and whether or not anyone believes that perhaps the ‘overwhelm’ of treatments that seem to be thrown at people with ITP in a frantic effort to bring the numbers up, could perhaps be contributing to some of the instability in platelets? Along with the anxiety we all seem to experience with ‘the numbers’, it seems like this disorder is incredibly overwhelming in terms of all of the processing/filtering of information we have to go through.

Sorry I know I’m asking a lot of things here!
I would just appreciate any insights anyone has into my history, or from your own experiences.Thank you for reading xxxxx

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Advice, insights, etc :) 5 months 2 weeks ago #72571

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Each person is unique as is their ITP to them. 
You recognise symptoms of a low count and go for a test.
If 4 days of Dex works for you then that is great. 
Personally if I was in your shoes I would carry on as you are. If you normally have a count of 170 then why do anything else? 
The following user(s) said Thank You: autumnlsmiles24

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Advice, insights, etc :) 5 months 2 weeks ago #72573

  • autumnlsmiles24
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Thanks for your reply!
My concern is that I *don't* recognise my symptoms, because my count gets very low before anything appears (the petechiae on I had at a count of 3k on my most recent hospitalisation was very very faint, and it was more of a 'gut feeling' to go to the hospital than the fact I was symptomatic)...so I find myself scrutinizing my body, or noticing small marks/bruises and becoming very anxious.
Do you have any experience with this?

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Advice, insights, etc :) 5 months 2 weeks ago #72574

  • MelA
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Like you autumn I had a "feeling" my count had hit the gutter after a tetanus booster - I had not one symptom, not even faint petechiae, nothing.   I went in for a count, got a message later from one of the docs in my PCPs office that my "count was low and if you continue to feel bad come in" - WHAT?  I never said I felt bad and there was no mention of what my count was in that message.  Got in the car and drove the 4 blocks to the office and demanded to know what my count was (16k and dropping) and then went home and called the hematologist's office for an appointment.  (I have never felt bad or tired or out of sorts or anything when my count goes down)  

I used to check my arms/legs/belly for red dots - if I bumped into something I'd write down when/where so that if a bruise came up I'd know it was ok.  But I've been fortunate since having one WinRho IV after the tetanus booster dropped my count and have had decent (not normal) counts since.  

You didn't have any symptoms but you knew your count was low - that's a good sign I'd say.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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