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TOPIC: Wife - Low Platelets

Wife - Low Platelets 2 months 1 week ago #66764

  • thomasjohnwood
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Hi everyone,

Back for the weekly update:

Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses): 127K
Week 7 - No Treatment: 33K
Week 8 - No Treatment: 53K

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Wife - Low Platelets 2 months 1 week ago #66770

  • Hal9000
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Second pulse is looking more like the first one, post menses.
With the gradual increase afterwards, it is almost like, would counts rise to normal levels with no menses?

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Wife - Low Platelets 2 months 1 week ago #66777

  • Lman
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Hal
I forgot to mention my response to dex when I was admitted to hospital .
I was given dex 4 times ( as a rescue ) each time it was for two days which I was in hospital .
I think dex pulse is four a four day treatment and I'm not really sure if the dose I was given was high enough (However , I can check from the report).
in both times and by all tests that I gave (including the day and the day later when I was discharged ) and even a week later .
They never rose above 22k ! How people have such a nice response to dex ?
And second thing , I was once given 11 units of platelets with initial count of 1 and a minor bleeding . couple of hours later counts were 2k !!
I read somewhere that each unit gives a healthy person +50k ... That's ironic :)

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Wife - Low Platelets 2 months 1 week ago #66787

  • Hal9000
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lman, the strong Dex response is because of different antibodies, wouldn't you think? Because of different ITP pathophysiologies, and with that, different inflammation pathways. Steroids works for one pathway. Cyclosporine works for another. Recall this one on inflammation and transplants.
"An Update on Immunosuppressive Medications in Transplantation"
www.fmshk.org/database/articles/897.pdf

On platelets. The hospital pumped me full of platelets for my appendicitis surgery. Three bags of platelets before surgery and an additional bag during surgery, to be exact. The first 3 bags got my counts up to 50s. They wanted >50.

I think, because I have a TPO antibody / production problem, and not a platelet destruction problem, it was easier for them to overcome low counts with platelet transfusions then they may have found with you. And so. Because one's immune system can only destroy so much at a time, the first platelet transfusion is consumed quickly. Once the phagocytes are consumed, then counts can rise.
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Wife - Low Platelets 2 months 3 days ago #66800

  • thomasjohnwood
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Hi everyone,

Back for the weekly update:

Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses): 127K
Week 7 - No Treatment: 33K
Week 8 - No Treatment: 53K
Week 9 - No Treatment: 58K

Next week will be interesting to see if the pattern keeps. Part of the reason for logging this is to help those who are newly diagnosed understand one of the many different paths this affliction can take. It's a nail biter, but asking the right questions of your hemo/physician can make all the difference in the world. I never thought I would ever be so "up-to-speed" on hematological sciences, and there's plenty more to learn.
The following user(s) said Thank You: vrushalin

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Wife - Low Platelets 2 months 2 days ago #66808

  • Hal9000
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thomasjohnwood wrote: ... Part of the reason for logging this is to help those who are newly diagnosed understand one of the many different paths this affliction can take. It's a nail biter...

Yes, love that data.

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Wife - Low Platelets 1 month 2 weeks ago #66928

  • thomasjohnwood
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Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses both late in the week): 127K
Week 7 - No Treatment: 33K
Week 8 - No Treatment: 53K
Week 9 - No Treatment: 58K
Week 10 - No Treatment: 60K
Week 11 - Treatment (4 doses of Dexamethasone & Menses early in the week, blood test late in the week): 65K

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Wife - Low Platelets 1 month 2 weeks ago #66932

  • Hal9000
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Was that 65 a turn? Next week will tell. Will it be above 65 or below?

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Wife - Low Platelets 1 month 2 weeks ago #66944

  • thomasjohnwood
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Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses both late in the week): 127K
Week 7 - No Treatment: 33K
Week 8 - No Treatment: 53K
Week 9 - No Treatment: 58K
Week 10 - No Treatment: 60K
Week 11 - Treatment (4 doses of Dexamethasone & Menses early in the week, blood test late in the week): 65K
Week 12 - No Treatment, Infection (Possible Candida Albicans): 16K

Seeing a specialist today to run some tests regarding the infection (which appear to be chronic and appears every couple of months, but has never been clinically treated).

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Wife - Low Platelets 1 month 2 weeks ago #66945

  • mrsb04
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Wife - Low Platelets 1 month 1 week ago #66992

  • Hal9000
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Anne, do you think it is possible that fungus is capable of hitching a ride on platelets to distribute, like viruses do?
I'm going to the USA ITP conference here in a couple of weeks. A good question (besides CRISPR technology) for an unsuspecting ITP specialist?

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Wife - Low Platelets 1 month 1 day ago #67055

  • thomasjohnwood
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Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses both late in the week): 127K
Week 7 - No Treatment: 33K
Week 8 - No Treatment: 53K
Week 9 - No Treatment: 58K
Week 10 - No Treatment: 60K
Week 11 - Treatment (4 doses of Dexamethasone & Menses early in the week, blood test late in the week): 65K
Week 12 - No Treatment, Infection (Possible Candida Albicans): 16K
Week 12.5 - No Treatment (Infection Resolved, early blood test): 34K
Week 14 - No Treatment: 39K

We are starting round 4 of high-dose dexamethasone today. Fingers crossed!

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Wife - Low Platelets 1 month 1 day ago #67059

  • Hal9000
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That infection seems to have put a big dent in progress. Like the immune system returned to a more aggressive state with lower counts. Makes me think fungal infections play a non trivial role in ITP.

The good thing about having a steroid response is that there are lots of effective drug treatment options. Lots.

Will the fourth pulse be a charm? Lets hope so.

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Wife - Low Platelets 1 month 14 hours ago #67068

  • mrsb04
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I hope you are not in a Catch 22 situation here.
If the fungal infection is contributing to ITP then please be aware that fungal infections are a know side effect of steroids so concurrent anti fungal treatment may be required.

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Wife - Low Platelets 3 weeks 4 days ago #67133

  • thomasjohnwood
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Week 0 - Diagnosis: 18K
Week 1 - Pre-Treatment: 19K
Week 2 - Treatment (4 doses of Dexamethasone): 165K
Week 3 - No Treatment (Menses): 13K
Week 4 - No Treatment: 30K
Week 5 - No Treatment: 64K
Week 6 - Treatment (4 doses of Dexamethasone & Menses both late in the week): 127K
Week 7 - No Treatment: 33K
Week 8 - No Treatment: 53K
Week 9 - No Treatment: 58K
Week 10 - No Treatment: 60K
Week 11 - Treatment (4 doses of Dexamethasone & Menses early in the week, blood test late in the week): 65K
Week 12 - No Treatment, Infection (Possible Candida Albicans): 16K
Week 12.5 - No Treatment (Infection Resolved, early blood test): 34K
Week 14 - No Treatment: 39K
Week 15 - Treatment (4 doses of Dexamethasone & Menses early in the week, blood test late in the week): 86K

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Wife - Low Platelets 6 days 4 hours ago #67265

  • Hal9000
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Anne, on the subject of fungus.
I was reading about Biotin (aka vitamin B7) and came across this article on Biotin and Candida fungus interaction.
ericbakker.com/biotin-for-candida/
That the fungus can have two forms, a (cell puncturing) mycelial form and a yeast-like form. Biotin forces the yeast-like form.

Then I did a search on PDSA for the word 'Biotin'. Found this thread.
pdsa.org/discussion-group/6-general-itp-discussion/26921-biotin.html#29220
Oh my gosh. Evidence right here on PDSA forum of a possible fungal and ITP connection. 'Kelirae24' comments are most interesting. The first question I would have for her is: was it starting Biotin that triggered the relapse, or was it stopping Biotin? I need to re-read what happened on her relapse some 8 years ago.

Looks like there is a story to be told in regards to fungus and ITP. Just don't know what it is.

Thomas, how are things?

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Wife - Low Platelets 8 hours 39 minutes ago #67306

  • JJ
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Biotin supplements also give false readings on some blood tests. They know it does on tests like thyroid tests but they don't know which others are affected. Best to get more biotin from foods rather than supplements, mind you I believe that about all vitamins.

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