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Bruising has returned 1 year 3 months ago #69835

  • CarMarie97
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Hello! My last few blood test have come back with normal platelets after being on prednisone. My bruising had pretty much all gone away during that time they were normal (for almost a month they have been good). The past couple days I’ve noticed my bruising has returned. Should I be worried that my platelets have lowered again? Anyone have experience with this? I was thinking about calling my doctor Monday but wanted to ask opinions on here since they aren’t open until then.

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Bruising has returned 1 year 3 months ago #69838

  • gozorakgogo
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What I find interesting, having been recently diagnosed in July myself, is how everyone differs as to when bruising, bleeding, petechiae, and those horrid black blood blisters on the tongue and in the mouth occur. Those physical manifestations appear to only occur for me when my levels are sub 10 closer to 2 or 3 which is where I was before hospitalization, diagnosis, and treatments. Since my treatments have begun I have bounced up and down from 15 to plus 200 back down to 12 and now up to 386 since late july and I have not noticed any of those symptoms again. I guess I an fortunate not to have to worry about that unless I am at 10 or below again. Which is also good because if the symptoms appear again I will know its back way too low.

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Bruising has returned 1 year 3 months ago #69839

  • CarMarie97
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My first lower test was like 52 when my bruising was bad so mine doesn’t have to get as low as yours to get bad. It eventually got down to 21. I’m also super clumsy so that contributes to it but some bruises are definitely unexplained. My only theory of getting them is when my cat jumps in my lap for some one them. I’m just worried that they’ll get low and I won’t know cause my next scheduled appointment isn’t until mid October.

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Bruising has returned 1 year 3 months ago #69840

  • MelA
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Mid-October isn't far away really. If you feel your count is down call your doctor and say you want a count done!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Bruising has returned 1 year 3 months ago #69844

  • gozorakgogo
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im always throwing myself around on my job and bumping into things and slipping on wet porch decks when its raining and im running parcels or mail up to a house. I can still actually see the outlines of the disturbingly large black bruises I initially had back in early july. I guess it takes time. My legs are not back to looking normal but so what is my new attitude. At my low levels, my cat Sparky likes to play rough sometimes and the slightest scratch would result in streams of blood lol

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Bruising has returned 1 year 3 months ago #69876

  • GrouchoMarx
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I found your comments most interesting.
I have bruises when I am scratch heavily by something. It leaves me a purple line.
But I understand that the main concern are unexplained bruises. My wife has no itp and gets haematoma and bruises quicker than me.
The problem with itp is that is a illness that pushes us to paranoia if we are not careful. To be honest, the people who have been closer to death in this forum were not because an spontaneous brain bleeding event but precisely the opposite, due to a high platelet count caused by the medication.

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Bruising has returned 1 year 3 months ago #69890

  • gozorakgogo
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the only thing about the ITP that concerns me is the extreme fatigue that comes when my level dips below 30 or so. The lower it is, the worse the fatigue. The side effect from the Nplate arent fun either. Apart from all that, Im not worried about anything in regards to the condition. Its just a big pain in the behind

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Bruising has returned 1 year 3 months ago #69893

  • GrouchoMarx
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The same to me regarding fatigue. I can only compensate it with running.

The bright side is that in my views, ITPers will end up having a higher life expectancy. Why?
When on earth I would have done so many blood tests to rule out almost anything. A colonoscopy, gastroscopy, to erradicate the Helicobacter Pylori, to drink occasionally, to exercise more than I ever did before, to take care about my weight, to look our skins permanently for all kind of abnormalities, to stop any sport of contact, healthy food.......etc, etc.....

When on earth I would eat Papaya Leaf, for God's sake?
The following user(s) said Thank You: Chad89, Columbia09

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Bruising has returned 1 year 3 months ago #69894

  • 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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gozorakgogo
What side effects are you getting from NPlate?

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Bruising has returned 1 year 3 months ago #69903

  • gozorakgogo
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Im assuming the soreness in my hips and upper legs are a side effect. I cant run up to houses any longer when mail and parcels cause im so sore. The soreness seems to intensify right after an Nplate injection(once a week) and lessens toward the later end of the week. It could be coincidence I suppose. Its not crippling pain but it is aggravating. It could be old age since im 54. Whatever it is I dont like it and it began right around the time I was diagnosed and began all my treatments

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Bruising has returned 1 year 3 months ago #69910

  • 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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Joint and muscle pain is a common side effect of it. Maybe worth discussing it with haemo.

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Bruising has returned 1 year 3 months ago #69912

  • gozorakgogo
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What would Dr Hackenbush recommend? Actually, during my 7 week absence from work after my diagnosis I must have viewed Horse Feathers, Duck Soup, A night At The Opera, and A Day At The Races 2 times each(having seen them all probably hundreds of times combined over the years) to mitigate my despair.

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Blood Blisters in my mouth 10 months 6 days ago #70867

  • EdwardJacob
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Are these common when you have petechiae on your legs? I am constantly getting these on my tongue, under it, and inside my cheeks. When they break, the wound can be very painful. I worry that they can also be happening elsewhere, like in my brain. My doctor doesn't seem to be concerned, but I am.

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Blood Blisters in my mouth 10 months 5 days ago #70879

  • JJ
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Blood blisters in the mouth is called wet purpura and a sign that the platelet count us very low. It would be unusual not to treat with wet purpura present.

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Blood Blisters in my mouth 10 months 5 days ago #70887

  • MelA
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EdwardJacob not everyone who has petechiae on their legs has blood blisters in mouth - I've had petechiae all over lower legs, belly and horrible bleeding under my skin (when diagnosed I looked like I had been beaten in a back alley with a 2x4) but in 31 1/2 years I've never had blood blisters in my mouth.

Your doctor is a hematologist? Are you comfortable with him/her?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Blood Blisters in my mouth 10 months 4 days ago #70888

  • mrsb04
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I am the absolute opposite of Mel. I sometimes have blood blisters in my mouth with a low count but I have never had petechiae even with a count as low as 2.

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Blood Blisters in my mouth 10 months 4 days ago #70890

  • EdwardJacob
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Thank you. PCP consults with hematologist. Recent CBC above 50. The white inflamed tongue is looking like some kind of post Covid #1 shot autoimmune response. Has not responded to Thrush medications. Does not look like any kind of tongue relating to any known illness. Also got angioedema on legs after second shot. Clearly autoimmune. Will see ENT in a week. It looks like an immune response I will just need to live with a while. There were close to a thousand "tongue" responses to the Moderna shot (whatever they are). I reported it to Moderna. No other bleeding present.

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