Does anyone ever solve the mystery...

...of what triggers their crashes?

It's been a while since my last visit.
I've been coasting along just fine in the 60's-90's for around 3 years since my crash to 4 in 2010. As of yesterday, am down to 9. Back to the Prednisone again.

The thing I've noticed... My counts seem to make their deepest dives in mid- to late summer. Was first diagnosed in late August, my other crash was in August, this time it's August. I remember episodes of heavy petechial rashes happening during the mid-summer heat at least 5 years before diagnosis. A definite pattern. So, I'm advancing a theory here: The list of foods that can affect platelets includes blueberries, cherries, various other summer fruits. I've been a fruit junkie all of my life and have really been chowing down on blueberries lately. I mean daily... cherries too, sometimes both. So would it be much of a stretch to think this really could be my personal trigger? Or am I pipe dreaming to think it could be so simple as that?

Of course, it's human nature to ask "why"... And it seems that for people with ITP that "why" is rarely answered. But I'll ask anyway: Has anyone here, or anyone that you've ever met online or off, ever ID'd their personal trigger?

Actually blueberries are on the long list of things someone on this board has suggested will cure itp.

But as for myself, I have discovered that some foods do trigger my platelets to drop - I have a condition called fructose malabsorption and when I eat the wrong things (many fruits, onions, whole wheat - things most people find healthy) I get terrible digestive problems and platelet drops.

So, does all that fruit upset your tummy? Maybe that's part of it.
Erica

If you go to the PDSA web site Blueberries are on the list of items that can lower plateletes.


That said I would ask do you have allergies?

Do you buy your fruit? And do you wash it well? I have been thinking lately when I eat fruit that perhaps I have not been mindful enough and perhaps the pesticides is contributing? Just a thought...

Nope, no stomach upset.
No food allergies... just tree pollen in the spring and sulfa drugs.
I always wash fruit well before eating. Guess organic would be best, but that's out of my budget.

I just knew it couldn't be so simple. LOL

I know you already know this but have to say it.


You do know anything grown in the ground it can be called organic. That is just a new gimmic sales pitch to get people to buy.

If it is in a package it is not organic it is a GMO food. PS: peppers didn't used to come in colours GMO gave them colours.


Just saying I'll shut up now!

You know, I've always thought that "organic" was just a buzz word used to fetch higher grocery prices from scaredy-cat consumers. But, I've just begun researching this... because of my precarious situation ... And have actually found some evidence that pesticide residue is known to exacerbate ITP. I'll keep looking. Have figured out by my own research several medical mysteries in my family that doctors missed [including my own ITP!], so I've got a pretty good shot at figuring this one out.

Am not saying this is causing my ITP, only that it might be worsening it. Repeating, I eat a lot of fruit in the summer, including the ones that have the highest levels of pesticide residue that cannot be washed off... Grapes, berries, peaches. Sure, I might be barking up the wrong tree; but I can't yet totally dismiss this August crash pattern and its potential relationship with diet.

That is why ITP is so frustrating because most people can't find a cause. That said if you feel something might be triggering it. Than look deeper try and find it. If you are seeing a pattern than follow that pattern look for other similar patterns in the same time frame.


One suggestion though if you think it is a food and plan on not eating them anymore. You need to check and see what you get from it. Like oranges; they give you vitamin C so if you remove them you need to find another food that gives you vitamin C to replace it with.



I agree with you 100% if you are finding a pattern than look into it. If you think it is the fruits try cutting out the ones that may or may not cause issues. You need to look at the whole picture what foods do you just eat in the fall? Is there a particular activity you only do in the fall.

Trust your gut instinct!

I have had ITP for nearly 35 years and noticed over the years the same drop mid summer - fall. Even now on Nplate there is a fall in counts (not so drastic as before) I put it down to extra pollen in the flowers and trees (their last hurrah before winter! BTW I live in Canada) I had to see my hemo today and he commented on the slight drop and as I had seen this post I mentioned the seasonal drop. He checked back on my counts for the last 5 - 10 yrs and said "the seasonal drop in counts is something we are looking into" By "we" he meant it is not just him but some researchers.
I always wash my fruit and veg throughly even from my garden where I use no pesticides. I'm interested to know how many other ITPers have noticed this seasonal drop.
High platelets everyone, Christine

Okay, since we are in the realm of crazy unsubstantiated quasi-scientific theories, here is a pet one of my own:

We know that prednisone reduces immune reaction and helps increase platelet levels.
We know that prednisone ( or dexamethasone) is a substitute for naturally occurring cortisol.
We know that stress elevates cortisol levels.
So shouldn't we expect (in the short term) that stress would increase platelets?
So what about the reverse?
What if you reduce your stress, and your cortisol declines causing your platelets to drop?
Who, in college, didn't get sick AFTER final exams were over?
Who, who taught school, hasn't gotten sick after turning in grades?
(And by the way, most cold-like illness stem from the immune system going haywire, not from a sudden explosion in the number of cold germs.)
Couldn't the same happen with low platelets?
Couldn't a decrease in stress cause a decline in cortisol causing platelets to drop?

I am curious if others have experienced platelet drops AFTER a period of stress ends or a period of diminished stress or relative relaxation begins.

Now for the more complicated version of the theory:
Stress elevates cortisol levels.
Elevated cortisol causes cells throughout the body to become increasingly cortisol resistant.
Cortisol resistance causes increased need for cortisol just to maintain previous status.
Stressful state ends (vacation, etc.) and cortisol declines.
Body screams, "Where's my cortisol" gets mad and starts gobbling up platelets.
Or something like that...

Here I was wondering if platelet drops were allergy alerted/triggered and first topic I see is something similar.

I walked outside the day before yesterday to water my cows and within a couple of hours my legs are covered in the petechiae from thigh to toes. Just from walking outside to water the cows? Doubtful but aha, its summer. Had to be I brushed up against some weeds that must irritate me.

Personal trigger? Some unknown allergy (that comes with summer) on my land and stress. IMO.
Fix? Move to some place prettier and every day calmer lol. Wishful thinking here. Ready for any season that isnt summer.

Who knows our bodies better than we?

Rob:

I agree that stress can trigger many, many things. Heart attacks, strokes, autoimmune issues, colds, just about anything. Stress can affect the body in ways we don't even realize.

But I have noticed, oddly, that there were many times that my counts stayed up when I've had a lot of stress, and times when they dropped when I had no stress at all. It's hard to predict what goes on with the human body....simply amazing thing, that is.

My first bout with ITP came directly after I was very sick with the flu. I had fever, shaking chills, muscle aches, severe cough, was in bed for over week, 2 or 3 weeks after that I was covered in bruises and platelet count of 60. It was a few weeks after that they went below 30 and I got diagnosed. My other bouts of ITP came at the same time of year....February.

midwest6708 wrote: Has anyone here, or anyone that you've ever met online or off, ever ID'd their personal trigger?

My ITP was triggered by a gamma globulin injection [gamma globulin is IVIg] - a crash was triggered by a tetanus booster. I can no longer get immunizations - but I will continue to get the flu shots, taking a risk, because I have grandchildren who might unknowingly give it to me. Luckily I already got my pneumonia shot before getting my new hematologist who delved further into my ITP & immunizations, and my low IgG

I've no idea how or when the ITP came about. Seemed gradual. Went from my old normal of 220+ to 150 at a yearly physical in July. The next summer it was 79, the summer after that, 33. In late August that year, it was 26 and finally diagnosed.

I'm most interested in what causes the count to plummet to single digits. The last time, exactly two years ago, it fell to 4 after a severe viral illness. I figured - "Bingo"! That's it, that happens. Again the dip has come in August, but there has been no illness. August seems the common denominator.

Christine, thanks for reporting your experience. Glad to know someone is looking into not just treatments, but to prevention through learning the whys and wherefores!

After a Solu-medrol IV last week and 20 mg pred for 6 days, am up to 199 as of today.

I appreciate everyone's input.

But I have noticed, oddly, that there were many times that my counts stayed up when I've had a lot of stress, and times when they dropped when I had no stress at all.

Sandi, that is exactly what I was suggesting... stress INCREASING platelets (at least short term) because of elevated stress hormones; when stress subsides, cortisol declines and platelets drop.

Just curious if any one else has observed this?

Ellen is currently stressed to the breaking point.
Platelets back up from 54k to 73k.
Sample size of 1: my favorite kind of science!

p > .5

Rob:

Stress has been discussed many times over the years. There have not been any true connections. People have reported drops during stress and people have reported no changes during stress. I can't say that anyone has actually reported counts going up and it's all anecdotal and conjecture. It's also hard to say because of normal fluctuations and the fact that the word 'stress' can mean many different things. Some people can take an unbearable amount of pressure before they crack and some people are like Aunt Pitty Pat - they need smelling salts because Scarlett danced before the mourning period was over.

I tend to think that stress has a negative affect on the body and can raise antibody production. I was diagnosed after a horrible period of work stress and a bad cold. I think the combination did me in. My stress was due to months of cramming 12 hours of work into an 8 hour day. I had headaches so bad that I had black spots in my vision for weeks.

Stress can raise the amount of cortisol in the body, but I don't think it's enough to cause platelets to go up. I'm sure it can result in some bodily damage in time, but I'm not real sure about it doing any good. I also hope not; we'd be suggesting that people go out and get themselves some stress to treat their ITP. I'd have to see some pretty solid proof of that. Again, another interesting discussion.

Rob you asked I answer:

Cortisol a hormone naturally occuring in our body. Produced by the body as a protection from stress. Produced in the endocrine system’s secreted from the adrenal glands. It regulates the way your body uses various fuel sources such as glucose. Normal cortisol hormone levels tend to follow a 24-hour circadian rhythm. The highest level in the morning and slowly declines as the day goes on.

#1. Prednisone suppresses it does not reduce so as soon as you stop suppressing it the body doubles production to compensate for the loss it had and stock piles in the hopes to prevent this from happening again. Which explains why after people stop taking it their counts auto drop.

#2. Synthetic steroid yes but hydrocortisone is the actual substitute for cortisol.

#3. stress does trigger production of cortisol

#4. Cortisol works for a few hours, Hydrocortisone works a little longer , Pred works like 12hrs and Dex 12-24hrs. So you would have to be in the middle of the stress or shortly after it happened and get your blood tested to actually see if it made a difference. That said if you compare the strength of Cortisol to Prednisone it is minimal in comparison.

So what about the reverse? took this as a rhetorical question.

#5. When the cortisol declined the platelets would drop because the immune system would not be suppressed and it would start that compensation stage again.

#6. This is common for people to get sick during and or after college exams.

#7. Not me are you nuts teaching kids As for anyone who does far as I'm concerned your a saint!

#8 ??? do not understand "Couldn't the same happen with low platelets?"

#9. I believe this was a repeat question so I refer to above answer related to your questions of increase and decrease.

"Now for the more complicated version of the theory:
Stress elevates cortisol levels.
Elevated cortisol causes cells throughout the body to become increasingly cortisol resistant.
Cortisol resistance causes increased need for cortisol just to maintain previous status.
Stressful state ends (vacation, etc.) and cortisol declines."

#10. Too much stress and the body burns itself out. Now you no longer have cortisol production so off to the doctor you go. He of course doesn't prescribe hydrocortisone which is equivalent to cortisol he jumps right into Prednisone which is like 10 times stronger. Now your on a drug that has short and long term side effects that only get worse as time goes by. Meaning in the long term you will end up with even more medical problems. All because you were put on a drug that you didn't need.

And none of this would of been needed had you just gone to my glass is half empty theory and drank another glass of wine!

Julia, Thank you for your thoughtful reading of my post. You have given me a lot to respond to!
#1. I don't know what you mean by prednisone suppresses does not reduce.
Prednisone suppresses cortisol production and reduces inflammatory immune response.
There are three ways prednisone affects cortisol:
1) Prednisone enters the H-P-A feedback loop and tells the pituitary not to tell the adrenals to produce cortisol
2) The adrenal over long term lack of activity atrophies and loses its ability to produce cortisol. This is what is normally thought of as causing the need for weening.
3) On the cellular level, glucocorticoid receptors become resistant to glucocorticoids like prednisone and cortisol. I assume that this also contributes to the need for weening.
Prrednisone reduces inflammatory immune response by acting on the same receptors that cortisol acts on.

#2 True. Hydrocortisone is an exact substitute but prednisone mimics its action by acting on the same receptors. It is considered to be a more effective substitute than hydrocortisone, because of its lower mineralcorticoid effect, perhaps.

#3 check

#4 I was unclear when I spoke of short term. I was not speaking of short term stress, but more like exam week. What I meant is that in the longer term, elevated cortisol receptors become resistant, and so elevated cortisol levels might have a diminishing positive effect on platelets.

#5 I have not read of the compensation mechanism of which you write.
Otherwise, BINGO! That's my whole point: When stress diminishes, cortisol drops, and platelets drop along with them.

#6 I always got sick AFTER exams. Good old sample size of 1, again!

#7 I taught algebara for 3 years, inner city. The kids stole my halo and I couldn't teach without it. Not a saint anymore, but great admirer of all who do it.

#8, #9 See #5. You already got my point.

#10 Too much stress does not diminish cortisol production, or at least nobody has been able to demonstrate that effect. What has been proven is that too much stress causes excessive cortisol which causes excessive resistance to glucocorticoids; your body becomes less and less able to use cortisol properly. This effect can be long lasting. Analogy: insulin resistance.

Prednisone has a 4X stronger antianflammatory effect, so 5mg of prednisone has the same effect as 20mg of hydrocortisone. But it's not about how big a pill you have to take to get the same effect. Prednisone has smaller mineralcorticoid effect, and so has fewer side effects (at least in theory). Dexamethasone has no mineralcorticoid effect, which is considered useful at higher anti-inlammatory dosage levels. Presumably that is why it is used for pulsing.

Phew, Julia, you just made me work up a sweat. Better make it a cold one!

As I said on another thread, bottoms up. The next round is on me.

Man was I brain dead!

#1 duh atrophy forgot about that one. 3)that was the section in school a I sucked at. Soon as the word receptors is mentioned I look for the wine! and since on you best bring the credit card!

#4 enough with exams already I'm out of school I need more wine!
#6 there's that four letter word again. glass needs refilling.
#7 wow I'm impressed Algebra scary subject.

#10 Next rounds on me!

Brain dead? My impression was that your comments reflected thoughtful consideration. You certainly made me think, and helped me to clarify my ideas. Now if I can just figure out how to communicate so that people can understand! I remember in college hearing Buckminster Fuller speak. Everyone thought he was so brilliant. My reaction was, if he was so darned smart, why couldn't he figure out a way to make his ideas understandable?

The scariest part of Algebra is teaching it to kids who can't do fractions. I loved the teaching, adored the tutoring, couldn't handle the class discipline and all the paperwork. Do you have the same problem where you are, with kids being passed on to the next level when they haven't learned the material? It causes terrible discipline problems... kids acting out to cover for not understanding the material, and of course, math gets it the worst because everything builds on what went before. I so didn't enjoy being called on the carpet by the principal for failing kids who could not do the work. I really should find a way to do tutoring, though, because I could teach kids where they are, which is how it is supposed to work.

Thanks for making me laugh! That was funny stuff!

Kids getting passed on happens sorta in cycles. For a while they don't believe in failing than they find kids entering high school who are below average so than they start failing them if they can't keep up. They are doing their best to prevent it from happening but the odd kid still makes it though.

I say brain dead because I should of remembered that from nursing school. Your welcome for the laugh! With my job i'm loosing some of my medical knowledge it isn't needed as much as if I worked in a hospital. So the thank you must go right back at you for helping to keep my knowledge fresh.


Now back to the topic at hand!

The answer is YES sometimes the mystery gets solved. There is at least one person on this site who knows the cause of her ITP. In my professional opinion that suggests that there will be others.

Rob,
Thank you - I am always impressed with your comments - & have had similar thoughts over the years of ITP. 'What if', 'how come', 'but then', 'so why', etc. No medical training (or even teaching) but a persistent need for answers! Keep on searching, you never know what you might discover.
mj

Update

I saw Dr. Hemo today, the first chance I've had to point out this specific August pattern of severe dips to him. His eyes brightened, and he at first expressed great interest. Then I mentioned my heavy summer fruit consumption, which he shrugged off. I said, "No? Pesticide residue, maybe?" He was non-committal, leaning toward the negative. By then, I could see his interest waning. I said, "I know very few ever figure this out, but it's human nature to try to."
End of discussion. I guess prevention isn't really his job, anyway.

I have found strong evidence from reputable sources that does support the pesticide link to AI diseases. So it's now up to me to decide what to do about the fruit. Not eat it, eat less of it, eat only the types with low residue, or make the monetary sacrifice to buy organic.

I know that everytime my platelets have dropped its been right after I have gotten a cold. Not with every cold this happens but the four episodes I have had, 4/4 times I have had a viral illness just before. The funny thing is I will be just about over my cold and my platelets drop. Also the cold has to be pretty bad too. Like a cough as well.