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TOPIC: March 2015, life changed.

March 2015, life changed. 4 years 1 month ago #49109

  • rhoda
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So March 25, 2015, i had routine lab work done for cardiac cath.
i got a phone call from the cardiologist at 6 30 pm. your platelets are low. call the office in the morning.
so, on the way to work the next morning, i ran out of gas. (it's not the first time that the physical world has mimicked happenings in my life.) i've always said, running out of gas only happens because of stupidity, and i proved it that morning.

i called the office after i got to work. your platelets are 17,000. we will give you a referral to a hematologist. i picked the dr that i knew better than the other dr. they got me right in on friday, 27th. i told him that i don't believe the lab work, and that it's his job to tell me the numbers are wrong. he said, i don't ever hang my hat on one single set of labs. we will redo them on monday, the 30th. do them BEFORE you go to work, not after.

of course i was googling numbers. 17. worrisome, but not scary, as i interpreted the numbers. sunday evening, i found petechiae. then i finally decided that maybe the numbers might be right. so i had the labs done monday morning. i got a phone call. go get your prednisone now, and start it now, don't wait until you are done with the days work. go get it now. you will be starting on 100 mg prednisone daily. your platelets are 5000. redo the labs in 2 days. your cath is on hold.

so the prednisone worked. they came right up to 71 in 2 days. the cath was done 1 wk after originally scheduled. no CAD. so i'm not sure where all the symptoms were coming from.

weaned off the prednisone, that stuff was horrible, i ended up on diflucan and nystatin during the process.

may 26, 2015. i did the lab work after work, because i wasn't expecting problems. and so of course, i didn't get a phone call on the day of the lab draw. the morning of the 27th, while getting ready for work, i saw petechiae again. um, ok. the dr office called. 25,000. go back on prednisone. this time, you can start at 60 mg prednisone.

i was really bummed. that was a bad day. i don't want to live on prednisone for the rest of my life. what am i doing that is causing them to go down? dr says, you're not, it's the nature of the beast. i told his nurse, i have a 100 questions, when can i come in for my next appt. he doesn't feel the need. i'm frustrated. i want my information from the official source.

is it an immune issue for me? is it DITP? i'd rather it be DITP, because then i should be able to control this once i figure out what causes them to drop.

so, question number 1. how fast can platelets drop? can they go from ok to critical in 24 hours time? i know their life span is 7-10 days, but if they get killed, can they drop like a lead brick?

#2. what role does aspartame play in all this? i would drink a 2 liter of diet soda on sat and on sunday each, for prob 3 months prior to all this starting. not to mention 1 or 2 of the 20 ounce diet soda on M-F. i have NOT had a diet soda since march 25. i would have thought that if the aspartame was the issue, that the platelets should not have dropped the 2nd time. the interesting thing is, tho, the weekend before they dropped the 2nd time, i craved diet soda. it was awful. i didn't cave, there was no soda involved, but i sure wanted that diet soda.

#3. ibuprofen. that weekend before they dropped again, i used ibuprofen again. prior to all this happening, i had been taking ibuprofen 400 - 600 mg once or twice a day for months for a self dx tendon injury (thanks to the dog :) ) i had stopped the ibuprofen, but then that weekend i had taken another dose. needless to say, it will be a LONG time before i take ibuprofen again.

#4. lymes and doxycycline. i was on doxycycline in august 2014, for lymes disease. are either of them a culprit?

$5. the Definity used for the echocardiogram in november 2014. altho dr j (one of the dr's that i work with) did tell me that he has never heard of definity causing thrombocytopenia. so i've crossed that off my list of possibilities. on the other hand, he shook his finger at me when i told him the weekend before they dropped the 2nd time, i had used ibu again. no more, ever. he said.

#6. diet? gluten? vitamins?

#7. prednisone brings up the numbers very quickly. i know there can be a rebound effect once done with the pred. is that what this 2nd drop was? and if so, does that mean there is an immune component to it, rather than DITP?

so i have many questions, i'm not getting answers from the official source. this time around, even tho the numbers were 25 when checked, the petechiae and the bruising both were worse.


any words of wisdom, other than hunting another hematologist?

what can i do to control this process?

on a side note, i've been bragging that i worked with platelets of 5.

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March 2015, life changed. 4 years 1 month ago #49110

  • Sandi
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Rhoda:

Unfortunately, ITP has few answers. Any, all or none of the things you listed could have triggered ITP. Sometimes people are just pre-disposed to ITP and it takes a cycle of events to set it off. Most of us have no clue as to what caused it. It just happened. There is no way to prove a cause. Even if it was DITP, stopping the drug does not mean that ITP will go away. It's unlikely that your doctor will be able to give you answers. Most of the time they say, "I don't know" and that is an honest answer.

There are other options to try, so you won't be stuck on Prednisone forever. Most people start with that and end up moving down the line of treatments until you find something that either stabilizes counts or causes remission.

It's good that your Hemo does not panic at low counts, some do. A calm Hemo makes a calmer patient. Hang in there, it will get better.

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March 2015, life changed. 4 years 1 month ago #49111

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Sandi wrote: Unfortunately, ITP has few answers. Any, all or none of the things you listed could have triggered ITP. Sometimes people are just pre-disposed to ITP and it takes a cycle of events to set it off. Most of us have no clue as to what caused it. It just happened. There is no way to prove a cause.
It's unlikely that your doctor will be able to give you answers. Most of the time they say, "I don't know" and that is an honest answer.

And that would be why he said, "that's why it's called idiopathic."

Sandi wrote: Even if it was DITP, stopping the drug does not mean that ITP will go away.

See, that's the part that i was hoping i could control :)

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March 2015, life changed. 4 years 1 month ago #49112

  • Sandi
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It is idiopathic, but the "I" actually stands for "Immune" these days. It's been changed in the past few years.

The hardest part about ITP is the feeling of loss of control. You can't really control counts, but you can control which treatments to choose, when you will treat, and how you react to it all. It can be a crazy ride for a while but it will get better. :)

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March 2015, life changed. 4 years 1 month ago #49113

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Regarding Q1, platelets are cell fragments, so strictly speaking they cannot be killed. In an otherwise healthy adults, mean survival time for a platelet is a 7 to 10 days, but in someone with ITP, platelet production may be impaired and platelet destruction may be accelerated. To make matters more complicated, up to one-third of platelets are sequestered in the spleen, held there in case of emergency.

As a result, platelet counts can fluctuate significantly over a period of days. However, it is highly unlikely that a person could go from a normal count (150-450, in general) to a life-threateningly low count in a matter of days.

Also, there are lots of threads here about people who seem to have improved their platelet counts through various dietary of lifestyle modifications. It's certainly worth pursuing blood work to check for micronutrient deficiencies, thyroid dysfunction, etc. Maybe there's something going on that is affecting your counts.

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March 2015, life changed. 4 years 1 month ago #49119

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Aoi wrote: Regarding Q1, platelets are cell fragments, so strictly speaking they cannot be killed. In an otherwise healthy adults, mean survival time for a platelet is a 7 to 10 days, but in someone with ITP, platelet production may be impaired and platelet destruction may be accelerated. To make matters more complicated, up to one-third of platelets are sequestered in the spleen, held there in case of emergency.

As a result, platelet counts can fluctuate significantly over a period of days. However, it is highly unlikely that a person could go from a normal count (150-450, in general) to a life-threateningly low count in a matter of days.

Also, there are lots of threads here about people who seem to have improved their platelet counts through various dietary of lifestyle modifications. It's certainly worth pursuing blood work to check for micronutrient deficiencies, thyroid dysfunction, etc. Maybe there's something going on that is affecting your counts.

my H and H is fine. borderline, but ok.
iron and albumin are both low, but not by much.
i've started taking folic acid and iron.

so what i'm hearing you say, is, 7 - 10 days (maybe 14) for platelets to drop significantly.
which tells me that the ibuprofen that i took 3 days prior to the 25,000 results probably wasn't the issue?

does ibuprofen destroy the platelets already formed? or does it prevent formation of new platelets?

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March 2015, life changed. 4 years 1 month ago #49120

  • Sandi
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Ibuprofen isn't known to affect platelet counts at all, unless someone has a specific sensitivity to it. If you did, chances are your counts would have been low long before this. It can cause problems with platelet stickiness though and shouldn't be taken if counts are down.

Counts can drop quickly when someone has ITP. An example would be if you had IVIG and days later counts went up to 165k; they could drop to 3k in a week or so. Counts generally drop quickly if a patient has had a treatment and it wears off. In that case, the drop can be slow or it can be fast. Everyone is different. Doctors usually place more importance on symptoms and not counts, so even if counts are low, symptoms matter more.

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March 2015, life changed. 4 years 1 month ago #49201

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300,000 as of yesterday. which is what they were one wk ago. so they are staying steady. that's on 40 mg prednisone.
start decreasing prednisone by 5 mg qod.
redraw in a week.

what i'm hearing from reading various threads on here, is that anything over 50 doesn't necessarily need treated. that the up and down numbers do more harm than consistently low numbers. as long of course, as they don't go too low.

what i'm also hearing is that slow and steady tapering off the prednisone works better too.

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March 2015, life changed. 4 years 1 month ago #49205

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Your counts are great. I hope the taper goes smoothing and you stay in the safe range. I think you're getting the right impression. Counts can and do fluctuate but as long as you stay above a certain level (generally regarded as 50, assuming no complicating factors), you just have a routine CBC to check platelet counts.

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March 2015, life changed. 4 years 1 month ago #49227

  • rhoda
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thanks, Aoi.
now i just have to convince mom that i'm not going to bleed to death.
she's much more worried than i am. it's driving me nuts. i figure if she does the worrying, then i don't have to.

hah.

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March 2015, life changed. 4 years 4 weeks ago #49257

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i'm still wondering if the lymes disease isn't a huge factor in all of this?

i've been doing some searching, and it would appear that thrombocytopenia is part and parcel of tick borne illness.

the thing that bugs me is that the dr hasn't looked for any other reason for the thrombocytopenia. just told me "you have itp. here's some prednisone. deal with it."

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March 2015, life changed. 4 years 4 weeks ago #49261

  • Sandi
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Rhoda:

ITP can be the result or symptom of many illnesses. If you do have Lymes, it should be treated. However, treating it may not cause ITP to go away. In that case, about the only thing you can do is treat the ITP.

Most doctors do not search for a cause unless something sticks out, like physical symptoms or other abnormalities on the CBC. Since ITP is considered to be autoimmune, it is generally accepted that it can appear alone, especially in the absence of any other apparent medical issues.

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March 2015, life changed. 4 years 3 weeks ago #49265

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If I recall correctly, Lyme can include low platelet counts. I'm not certain if a low platelet count (i.e.: thrombocytopenia) from Lyme would be considered ITP, but treating the Lyme is of course important, and could lead to better platelet counts.

When my ITP was diagnosed, my PCP just shrugged his shoulders and said "it's immune, you know." My hematologist used more technical language but said essentially the same thing.

ITP is not generally regarded as caused by a specific event or factor, as is the case with most autoimmune disorders. So doctors are often stuck simply saying that "it happened" or something similar.

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March 2015, life changed. 4 years 1 week ago #49715

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does dizziness have anything to do with itp?

the past 10 days, i've been dizzy. mostly in the afternoon/evening. i'm ok in the morning. and i'm ok sitting or after i get moving. but the transfer from sitting to standing makes me dizzy. and not even dizzy so much, as lightheaded. the only accompanying symptom is a pulsation that i can hear. it's not related to heart rate. it's more like a louder and quieter equal pulsation in the noises i hear. not tinnitus.

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March 2015, life changed. 4 years 1 week ago #49716

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Just my thoughts here, your doctor likely has the answer. Doesn't sound like ITP, but you might look into low blood pressure. Or "orthostatic hypotension"- its a type of low blood pressure. Are you dehydrated? Mild dehydration can can low blood pressure. I get lightheaded if I am out in the sun too long. good luck on that

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March 2015, life changed. 4 years 1 week ago #49717

  • Sandi
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I was dizzy when my counts were really low. I'd feel dizzy wen standing up. I also got a weird room tilt thing when I was sitting. The room would tip 45 degrees...only happened when counts were low. It lasted a few seconds and stopped.

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March 2015, life changed. 4 years 1 week ago #49724

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poseymint wrote: Just my thoughts here, your doctor likely has the answer. Doesn't sound like ITP, but you might look into low blood pressure. Or "orthostatic hypotension"- its a type of low blood pressure. Are you dehydrated? Mild dehydration can can low blood pressure. I get lightheaded if I am out in the sun too long. good luck on that

at first i thought it was bp related. and so i either halved or skipped my lisinopril for a few days and watched my bp. it made no difference in the dizziness. i thought maybe it was posture, because it only happens in the afternoon, which is when the desk part of my job starts. so i switched chairs. no go. i thought maybe it was prednisone related, but i've been off of it for 3 days now, and there's been no lessening of symptoms.

actually, about 2.5 wks ago, there was a similar but different episode, in that the dizziness was different. that time the room actually spun and i felt wonky the next day. that one was bp related. 82/40 at noon. that was different than what i've been experiencing the past week. i had been put on fluid restriction for fluid overload. (i sorta increased my fluids on my own after that.)

and then it was fine for about a week. this dizziness is almost more of a head pressure/lightheadedness. i've not spun, nor has the room spun, at all, each time it's happened.

its annoying.

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March 2015, life changed. 4 years 1 week ago #49725

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poseymint could be right: orthostatic hypotension is a side effect of lisinopril.

Orthostatic hypotension is where your cardiovascular system is slow to respond when you go from lying down to sitting or sitting to standing. Too much blood goes to your legs, and too little to your brain.

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March 2015, life changed. 4 years 1 week ago #49729

  • mrsb04
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It never ceases to amaze me how different countries have different terms..over here that is known as postural hypotension

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March 2015, life changed. 4 years 1 week ago #49731

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Orthostatic is usually the medical term, postural the lay term.

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March 2015, life changed. 4 years 1 week ago #49738

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Been nursing for over 40 years and have never heard anyone use the term Orthostatic

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March 2015, life changed. 4 years 1 week ago #49740

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I just looked at the Mayo Clinic website titled "Orthostatic hypotension (postural hypotension)".
One possible cause was adrenal insufficiency, which can result temporarily from tapering prednisone too quickly, especially when you start tapering below 10 mg. In theory that could be the cause of your dizziness, although I have not heard that complaint before. Where are you in your prednisone taper?

Heart problems are listed as a possible cause as well, so you may want to mention it to your cardiologist.

Are your platelet counts still awesome?

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March 2015, life changed. 4 years 1 week ago #49741

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Here is the study done by a clinical academic, Professor Newton from Newcastle (UK). The study is about fatigue in ITP and although the whole report is not freely available I have a copy, and in it she says

"the frequency of fatigue among patients with ITP and its association with orthostatic symptoms..."

clearly linking the two, ITP and orthostatic symptoms. Interesting.

onlinelibrary.wiley.com/doi/10.1111/j.1600-0609.2011.01587.x/abstract

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March 2015, life changed. 4 years 1 week ago #49748

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Rob16 wrote: I just looked at the Mayo Clinic website titled "Orthostatic hypotension (postural hypotension)".
One possible cause was adrenal insufficiency, which can result temporarily from tapering prednisone too quickly, especially when you start tapering below 10 mg. In theory that could be the cause of your dizziness, although I have not heard that complaint before. Where are you in your prednisone taper?

Heart problems are listed as a possible cause as well, so you may want to mention it to your cardiologist.

Are your platelet counts still awesome?

174 after being done with prednisone for 2 days.

i did wonder if maybe it was a prednisone side effect. i was at 20 mg when it started. tapering by 5 mg q 3 days. so i'm done now, sunday the 6th was the last of the prednisone. i've had quite a few more side effects on the lower doses, than i do on the higher doses. i feel GOOD on the higher doses!

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March 2015, life changed. 4 years 1 week ago #49751

  • Sandi
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The lower doses can do you in. Withdrawal side effects can last weeks to months after stopping the drug.

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March 2015, life changed. 3 years 11 months ago #50590

  • rhoda
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here we go again.
round 3 of prednisone since march.

labs were done yesterday, (a day before scheduled day because those stupid petechiae showed up)
2.
2.

2000.

i'm tired of this mess.

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March 2015, life changed. 3 years 11 months ago #50597

  • Sandi
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Yes, it does tend to get old. It's time to look into another treatment option, I think.

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March 2015, life changed. 3 years 10 months ago #51194

  • rhoda
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how helpful is a vitamin k supplement?
vitamin k is given in heparin/coumadin overdosing.

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March 2015, life changed. 3 years 10 months ago #51195

  • Sandi
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Vitamin K aids other clotting factors, not platelets. There are many steps to the clotting cascade and platelets are only one of them.


Vitamin K plays a role in your blood clot formation and bone health. Many types of food contain vitamin K, and it is rare to have a deficiency. Vitamin K is an essential cofactor in the activation of certain proteins within your body. Without the activation step, certain biochemical reactions cannot be completed. A vitamin K deficiency will predispose you to bleeding, and blocking vitamin K prevents inappropriate clotting.

The clotting cascade is a pathway containing many biochemical steps in the formation of blood clots during tissue injury. Vitamin K is important in the steps involving protein factor II, VII, IX and X. Factor II is alternatively named prothrombin. Also, anticoagulation proteins C, S and Z, as well as osteocalcin and the matrix-Gla protein depend on vitamin K. Prothrombin alone needs vitamin K to modify 10 different regions within the protein for functionality.

Blood clotting has several phases. The first phase contains several prothrombin activators, including vitamin K. Activation of prothrombin, or factor II, further activates fibrinogen, which activates fibrin. The fibrin begins to physically repair damaged tissue. It forms a physical barrier to prevent further blood loss. If vitamin K is deficient, prothrombin cannot activate and blood clots cannot form.


Factor VII

When cells are damaged, they increase a protein on their surface called tissue factor, or TF. The tissue factor needs to bind to factor VII in the clotting cascade. Factor VII cannot be bound until it is activated with the assistance of vitamin K. Tissue factor bound to factor VII becomes a protease for factors IX and X in the cascade. Proteases cleave molecules off of proteins to activate them.

Factor IX

"F9" is the genetic symbol for the gene that makes clotting factor IX. Factor IX is made in the liver. If your liver has decreased functioning capability, clotting factor IX may be diminished. Hemophilia B results from deficiencies in factor IX. Clotting times can be severely, moderately or mildly decreased. Low levels of vitamin K can exacerbate problems associated with hemophilia B, but any changes in your diet should be discussed with your doctor.

Factor X

Factor X is also known as the Stuart-Prower factor. It was named after the first two individuals discovered to have a genetic deficiency in factor X. Factor X is an enzyme activated on the surface of your blood platelets with the help of tissue factor, calcium and vitamin K. Once the enzyme is activated it becomes factor Xa, which is responsible for the conversion of prothrombin to thrombin within your clotting cascade.


www.livestrong.com/article/472950-vitamin-k-dependent-clotting-factors/

Some people with ITP can also experience blood clots even with low counts. Seems odd, but there are clotting disorders that can go along with ITP and some people have to juggle blood thinners and low counts at the same time.

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March 2015, life changed. 3 years 9 months ago #51219

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so what are some good supplements to take?
that will be helpful. (ok, might be helpful)

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