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petechiae back 5 months 1 week ago #71591

  • gozorakgogo
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So great. Was just out side...still light out..wearing shorts and I noticed on my right shin area and the top of my right foot what appears to be a few clusters of petechiae or at least it looks to be. Im not sure. One of the issues I am having to deal and come to terms with is that the shins of my legs have never completely healed from last year. I still have red marks that are unsightly and havent gone away.

I had a serious case of petechiae last year when at a level of 2 but the bruising showed up first. No serious bruising now, no bleeding of gums like last year either. I feel off but I have felt off since this all began.

Is it possible to have a limited outbreak of petechiae in just a few places on the body? It would seem that if you platelet levels low enough to bring it on it would be all over instead of located in one or two areas of the body

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petechiae back 5 months 1 week ago #71592

  • MelA
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Instead of second-guessing why don't you go in for a count and you will know for sure whether your count is good or has dropped?!

When I started having symptoms I only had petechiae on my belly - bruises came shortly after and all over. We are all different.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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petechiae back 5 months 1 week ago #71593

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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I’ve never had petechiae at all.
Go get a count.
When you say you have felt off all the time what exactly do you mean?

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petechiae back 5 months 1 week ago #71598

  • gozorakgogo
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upon closer examination I thinking it might not be petechiae after all but some minor rash since I can feel raised bumps. Pretty sure petechiae is under the skin surface and smooth to the touch.

As far as feeling off, a total body fatigue and soreness in my upper leg muscles as well as loss of strength in my legs. Not overly tired as in needing sleep but the kind of fatigue that zaps energy. Long hours at work so when Im not working i simply dont have the energy to go anywhere or do anything. Ive basically given up on such things and no longer even wish to do them. Before ITP I was always full of energy, running all the time everywhere, very flexible now not much at all. Im no where near are sure footed as I was last year and I actually have to think about making that jump or leaping over those steps before trying. Running, jogging is too uncomfortable now. It really sucks(pardon my language)

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petechiae back 5 months 1 week ago #71600

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Gozo
I know you had some of those symptoms at the outset but may I suggest you have your cortisol and ACTH levels checked. If I remember correctly you stopped your steroid taper early so you may have a mild adrenal insufficiency. I'd also ask for a thyroid panel too just to rule that out.

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petechiae back 5 months 1 week ago #71601

  • gozorakgogo
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I did, rather foolishly, end my Prednisone taper 5 days earlier than what was recommended(I think it was supposed to be 2 or 2.5 milligram dosages a day those last 5 days of the taper. And it is true that the week after my final dose I experienced fatigue far worse than what Im experiencing now. I was pretty much bed ridden all day for 2 of those days.

I have wondered if that is playing a role in what I dealing with now. I have researched a bit and have found what I am experiencing now can be due to high dose steroid use. I was at 60 milligram a day for about a week and a half before they began tapering me off. The decision was made to go to Rituximab and Nplate because my response to steroids in regards to my platelet level was negligible.

But its been 11 months since I had that final dose of Prednisone. I would have thought that that is far more than enough time for cortisol levels and my body to have adjusted to such a short term use of Prednisone

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petechiae back 5 months 1 week ago #71603

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Your post pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30668-count-up-to-260-from-12-in-one-week-on-combination-rituximab-and-nplate.html?start=0#69619
" I began at 60 mg a day for 5 days then brought down to 40 for around 5 days then down to 20 for 5 days(give or take a day I cant recall) now at 10 mg for 7 days and then 5 mg for 7 days and then off of it. That is the plan."
You started with 500mg Pred over 10 days. That would wipe out Superman's HPA axis let alone us mortals. Then you did a rapid taper and finished it early. Your HPA axis may well have never fully woken up.
I really do think you should get checked out for Adrenal insufficiency. You should not feel like you do purely from ITP.

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petechiae back 5 months 1 week ago #71604

  • gozorakgogo
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oh my goodness...I couldnt remember what that final taper dosage was lol

But wouldnt a year allow the body to overcome Prednisone usage? I guess I am fortunate in that I had to use for only a brief period of time while some of my fellow members here have been on Prednisone for much much longer periods of time. The cumulative dosage (500 mg) over that short period of time however is not something I considered.

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petechiae back 5 months 1 week ago #71605

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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But wouldnt a year allow the body to overcome Prednisone usage? Not necessarily particularly with a badly managed taper. It can last for yonks and may never go away unless treated.
My nursing instinct says he has either got Adrenal insufficiency or an under active thyroid. One quick trip to the doctors to have the blood tests I have suggested will see if I am correct, and if I'm not then your doctor should really try find out why you are like it after all this time.
Do you really want to continue with the substandard quality of life that you say 'sucks' or go back to being yourself?

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petechiae back 5 months 1 week ago #71610

  • gozorakgogo
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made a drs appointment yesterday. Im guessing that adrenal insufficiency wouldnt be something picked up on a CBC result. I do remember the battery of tests I was put through when I was in hospital the first time last year and my thyroid was fine but that was before the prednisone dosages began.

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petechiae back 5 months 1 week ago #71611

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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
  • Posts: 1901
  • Karma: 7
  • Thank you received: 546
CBC will not look for adrenal insufficiency, specific tests are required as I suggested.
Your thyroid levels were fine last year but people with an auto immune condition have a 25% chance of developing others, it is called Multiple Autoimmune Syndrome. My haemo checks my thyroid levels regularly.

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