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TOPIC: Wife - Low Platelets

Wife - Low Platelets 1 year 1 month 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 1 year 1 month 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 1 year 1 month 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 1 year 1 month 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.
The following user(s) said Thank You: Lman

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Wife - Low Platelets 1 year 1 month 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 1 year 1 month 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 year 1 month 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 year 1 month 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 year 1 month 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): 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 year 1 month ago #66945

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Wife - Low Platelets 1 year 3 weeks 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 year 2 weeks 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 year 2 weeks 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 year 2 weeks ago #67068

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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  • Karma: 7
  • Thank you received: 411
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 1 year 1 week 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 11 months 3 weeks 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 11 months 2 weeks 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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Wife - Low Platelets 10 months 1 day ago #67672

  • thomasjohnwood
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Hello everyone,

Sorry for the lapse - the last few months have been a bit of a whirlwind.

Since week 15, blood tests were changed to bi-weekly. We completed a total of 6 Dexamethasone pulses. The last two dex pulses raised platelets to 60-80k range, before they would drop to 20-30k range a few weeks later. The last two blood tests (conducted on Thursday of last week and Friday last week) were 19 and 21k.

My wife began Rituxan Monday. We got through the first infusion, but my wife had a reaction. In addition to the scratchy throat, there was some abdominal and side pain. The infusion was stopped and restarted, and we were able to get through it. She has a metallic taste in her mouth and lost her appetite to far today, but she's put on a brave face.

We are booked in for Rituxan for each of the next 3 Mondays. Hoping that Rituxan is effective for my wife's ITP type.

I hope that logging this helps someone else who might be starting the journey off, or to the support system of those with a loved one who is going through treatment(s). As you start out, it really does feel like a roller coaster. You really don't have the perspective you need to make informed decisions and to drive treatments like you would want/need to if the affliction lasts long term. But things oddly seem to normalize... I remember the first dexamethasone pulse and how scary it was... By the sixth one, it was just that thing we did every 4th weekend.

Rituxan infusion was hard - as it was much more intense, and was much harder to prepare for... But, next week, at least we know what we are in for...

Thanks again to everyone for their support.

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Wife - Low Platelets 9 months 4 weeks ago #67702

  • Hal9000
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Oh wow, went all the way to six pulses. A valiant try for sure.

I think those that respond to steroids often have that 'roller coaster' feeling as you describe. For others that don't respond, it's more about finding a drug, ANY drug, that will work. More of a 'desperation' feeling. After failing steroids, I went on to respond strongly to IVIG. Thank goodness. But there are other folks, where steroids does nothing and IVIG does nothing or next to nothing. I can re-imagine the desperation feeling I had, and multiply it by two, to imagine how these folks must feel. Probably scared pooh-less.

Anyhow. Glad she made it through the first treatment unscathed. Yes, just reading about the possible negative consequences of taking Rituxan will put a lump in your throat. It probably goes without saying, but anyhow. Her chances of remission via Rituxan are far higher than they were with Dex/steroids. Steroids are just cheap and not that dangerous.

Hoping for the best.

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Wife - Low Platelets 9 months 2 weeks ago #67819

  • thomasjohnwood
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Quick update:

Counts last week (after 1 round of Rituximab), 109k.
Counts this week (after 2 rounds) 50k.

Understand it can take weeks to work fully, but an encouraging start.

Second round was tolerated much better than the first. Round 3 today.

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Wife - Low Platelets 9 months 2 weeks ago #67838

  • Hal9000
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Thomas, just to give you an idea. Those that don't respond will pretty much flat line during the whole thing. No big bumps. Like for me, I think I got a 30 something once and a couple of twenty somethings during treatment. My baseline is 12. So the 109 bump does look encouraging.

Cheers to a great count and long remission !

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Wife - Low Platelets 8 months 4 days ago #68091

  • thomasjohnwood
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Quick update:
- Counts this month (approx 6 weeks removed from first round of Rituxan) = 62k.
- Still mild bruising on occasion, but typically smaller than the size of a quarter and localized to one or two spots on the body (legs, stomach, etc.).

Since the rituxan, there has been some psoriasis, but no major complications so far. Moved to monthly blood monitoring - no treatment scheduled unless levels dip below 20k.

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Wife - Low Platelets 8 months 1 day ago #68094

  • MelA
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62k is a good count don't you think. I hope she continues to do well.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Wife - Low Platelets 7 months 3 weeks ago #68137

  • Hal9000
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Hoping for a great count on next check Thomas.

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Wife - Low Platelets 5 months 4 weeks ago #68467

  • thomasjohnwood
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Finished Rituxan in November. Last few checks have been between 50-70. Still suspect counts drop around menses, but hasn't happened to correspond to a blood test date.

Worried about the blood test today. Been bruising the last few days, and a bit of teeth bleed. Wouldn't be surprised if counts are low.

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Wife - Low Platelets 5 months 3 weeks ago #68481

  • thomasjohnwood
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57k - guess you really cant predict this stuff

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Wife - Low Platelets 5 months 3 weeks ago #68535

  • Hal9000
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thomasjohnwood wrote: Finished Rituxan in November. Last few checks have been between 50-70...

Looking through my forum notes, there's been a few folks achieving a partial remission after Rituxan. FWIW, here they are. Not unexpectedly, they are all steroid responders.
- hairball01, 6 mo partial, no resp to further repeated Rituxan, wildly fluctuating counts on Nplate, treating with steroids
- poseymint, 6 mo partial, fluctuating counts on Promacta, treating with Nplate
- KittieG, 1 mo partial, living with 10-30 counts
- tkine, 30-40 counts, stopped posting
- penlyn63, fluctuating counts, stopped posting
- barrelgal, 3 consecutive partial remissions from Rituxan, splenectomy remission

My opinion. I can only assume that two antibodies are at work and this is a row '1/2' situation in my ITP treatments table. Though, I suppose it is possible that some of these cases are actually secondary ITP and something else is driving the noted fluctuations.

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Wife - Low Platelets 5 months 2 weeks ago #68548

  • MelA
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57k is a good count - I like mine above 60k but 57k and 60k are really the same thing.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Wife - Low Platelets 5 months 3 days ago #68602

  • thomasjohnwood
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Quick update: Last two counts were both in the 50-60k range.

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Wife - Low Platelets 4 months 3 weeks ago #68686

  • Hal9000
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If this partial remission collapses, one thing that comes to mind would be to combine with Promacta during Rituxan treatments. This combination is what user Carcamoc10 did. After a very rocky count ride, she appears to be in full remission now.

Cheers to record length partial remission !

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