I could try adding Resveratrol to papaya leaf extract. Its a bit questionable because it has anti-platelet properties, but it can control auto-antibodies, which is what is possibly making my papaya leaf extract inconsistent, without dexamethasone, lately. It may be very questionable as it could delay clotting. So, probably won't dare use it. Maybe curcumin and resveratrol together. They are both blood thinners, so, can be scary, but could work, due to fighting auto-antibodies... Who knows?

Well, 8 days without papaya leaf extract was too much. More adjustments... In fact, the initial pulse didn't work, so back in the basement because of 2 week cbc increment. Took 2 weeks to find this out.

Oh hey Judielanie. Really nice to hear from you. And sorry to hear of your struggles. 

I finally had some good news last week. Apparently the combination of Nplate and Prednisolon managed to get my platelets up again. Now we hope to be able to slowly reduce the Prednisolon and if it does not work might try stopping my antidepressant Paroxetin. So I am supper happy to (at least temporary) be out of Fatigue and imminent ER risk with even couple of strategies ahead to maneuver difficulties.

Though the cortison seems to interfer a bit with my early detection from body symptoms. Currently only in the positive way, I have bruises but my counts are good. Seems like that can be a side effect of cortison although it is rare for somebody as young as I with no prolonged cortison treatment beforehand.

My pets health is also fluctuating. It is amongst others a progressive illness coupled with me needing to go to the vet quite often (blood draws every two weeks). The last week was quite okay, with the excess energy from the prednisolon I could manage those additional stresses quite well. Though I did realize that my cat is on a higher dose (compared to body weith) on prednisolon than me. Explains why she is so crazy with energy sometimes too.

Am also quite proud of having now learned to give myself the subcutaneous injections from Nplate. A year ago I was quite afraid of needles but now after one year of giving subq's to my cat I can even do so to myself!

Hope my upbeat situation helps you to remember that there can be good turns right around the corner. I just try to see it as a "mini holiday" from my chronical illness where I can regain some energy for the next leg of the "adventure".

Feel free to contact me if you want to talk about your hard pet situation.

judielaine wrote: Actually, the lab i use records "undetectable" for  3 and below. They may know that the 10% difference from one source didn't apply to their lab counter.

Oh, didn't know that undetectable can be 3. Thanks.

Actually, the lab i use records "undetectable" for 3 and below. They may know that the 10% difference from one source didn't apply to their lab counter.

judielaine wrote: Yes, the measurements have a margin of error and, joy, it's different at different ranges.  I've been in the single digits (well, single thousands) and variations in that range (undetectable vs 5, for example) weren't considered significant byt the hematologists. One thing i read gave an uncertainty of 4% above 50k, 10% below, with a bias towards over counting in the low range.

If the 4% is right, it seems your numbers still indicate increase.

Also, ITP patients have more natural variability. So a regular series of measurements of an ITP patient will have the variation due to the equipment and due to the natural variation.

A 10 % inaccuracy at platelet count 10 is just 1. It could be one off. Now, 5 to an actual of 0 would be a 100% inaccuracy. A 0 is much worse than 5, because a 0 suggests no clotting factor at all. A 5 could suggest some super-platelets that could get the job done. Not saying that your hematologist didn't suggest otherwise, but I would feel much better about a 5, than a 0. AI agrees, or at least when I just asked. I have yet to see less than 5, though, so...

As far as the original post, yes, the numbers don't sound too bad, at the assumed lack of medication. Doesn't seem like your (Don's) immune system is fighting your platelets.

My numbers, personally, just go down without medication kicking into a response mode. At least as far as I can tell, without daily tests. So, therefore, my immune system is continually fighting my platelets, when not medicated. Which means of course, that I have the exact described symptoms of ITP.

Yes, the measurements have a margin of error and, joy, it's different at different ranges. I've been in the single digits (well, single thousands) and variations in that range (undetectable vs 5, for example) weren't considered significant byt the hematologists. One thing i read gave an uncertainty of 4% above 50k, 10% below, with a bias towards over counting in the low range.

If the 4% is right, it seems your numbers still indicate increase.

Also, ITP patients have more natural variability. So a regular series of measurements of an ITP patient will have the variation due to the equipment and due to the natural variation.

My sympathies on the the loss of your dog. I noticed petechiae as we were getting ready to go to the vet to say goodbye to one of our elderly cats. He'd awakened me in the wee hours of the morning as he was struggling due to loosing control of his back legs. (He had a heart condition and a clot that would do just this was likely.) We went straight from the vet to the lab for a CBC draw, and those numbers came back with undetectable platelets.

I wonder how quickly you are able to get CBCs after noticing the petechiae. When i have gotten the counts at the beginning of a bout of petechiae the numbers have been 6k and undetectable. Last year, when i didn't have standing lab orders, the counts were much higher, but it was well after the onset of the petechiae .

My initial consult with my hematologist was quite long, but i think i will be seeing a nurse practitioner from here out. My sense from my primary care doctor (who is a director at a "Healthcare Quality Improvement" organization, as well) is that ITP is in some ways routine for the health care system in my area.

Maybe sharing what you need from your appointments and asking what your doctor's purpose for the appointments is might help align expectations?

I hope your rituximab treatment continues to work. My course of rituximab was completed six weeks ago after two drops to hospitalization levels less than two months apart.

Hi, i'm in my mid 50s. I had several rounds of bruising and petechiae with substantial fatigue last summer which seemed to go away when we finally excluded other causes and settled on ITP. This spring i've had two rounds where i had a blood test at the onset of the petechiae. The first time i was in single digits, the second time "not detectable." Each time we responded with a short course of steroids (dexamethason) and an infusion of IVIG. I've since received a treatment with rituximab as the hematologists here think it may be more effective if it is used sooner.

I envy your confidence in observing your body to know your platelet level! So far all i can observe confidently indicates a drop to a dangerous level, and i wish i could catch it before then. I have had a lot of distressing things happen with family and pet health in the weeks since getting the rituximab: learn ing how to listen to my body and correlate with platelet counts has been hard with grief and stress weighing me down.

This forum *is* pretty inactive, and the Thrombocytopenia group on Reddit is inactive also www.reddit.com/r/Thrombocytopenia/new/ . I just checked the Facebook group, which is private but shows "10 new posts today, 244 in the last month'. I too have avoided using Facebook (although i made an account in the dark ages when one had to be invited), and i'm not sure i will start again.

Yes,  these receptors, the ones that tpo receptor agonist drugs turn on, or the ones that papaya leaf extract turn on (I think they are different ones?), are switches that require a certain amount of medication to turn on. This is why the response comes and goes. Its a very sensitive system that will show a roller coaster ride. We're picky about the range, we're picky about not taking more drugs than we need to. It adds to the likely-hood of a roller coaster ride. Yippee! Be happy with the ride. It could be worse. One thing about it, it does make things interesting. And there are certain advantages of taking anti-inflammatory medications.

Don I agree with Margaret, your questions are best answered by your hematologist - be sure you write down all your questions and take with you to your appt in July (I have to do that or I forget them ).

A count of 79 is good in my book - do you have any symptoms of a low count?

Please keep us posted - let us know what your hematologist has to say!! We care about you!

Hi Don,
I think these are all questions for your haematologist. I certainly can't answer them. But with your current and recent counts, there's no need to worry. They're below average but still quite healthy. Many people here have had and/or live with lower counts. As you have an appointment in July you have a good chance of keeping things under control.
Good luck with it,
Margaret

Hi
I was diagnosed in Dec 2024 with a platelet count of 79.  I have a hematologist appt in July.  since then with other blood work my numbers have gone from 79 to 86 to 101.

Could this be a one time thing and I am now heading back to normal?

Do blood counts have a margin of error.  If my hemoglobin is 112 does that mean that's it or is there a leeway of 1 or 2 up and down?
Several of my CBC numbers are below normal of above by only 1 point.

Thanks
Don

Makes sense to stay with it. Once you leave it, you may not want to go back.Official Nplate site lists a lot of common symptoms. Headache is number one and trouble sleeping is number 4.

There is no perfect treatment, in general. I can't really get past the cost to someone myself, yet, anyway. I haven't exhausted my choices,  to try something else yet. 

I stood back, though and looked at my platelet trends, and notice a switch is being thrown. Either I successfully flip the switch with lots of papaya leaf extract, and it goes up incredibly, or I try a small amount and I drop almost as fast back to the bottom. My new decision is to just take the lots of papaya leaf extract once every 2 weeks and see if it drops any quicker without the smaller doses in between.

This could in effect show a level line, with a 2 week cycle of papaya leaf extract and 2 week blood tests, but we know the roller coaster that is behind it. It seems steady dex or prednisone would smooth things out, but trying to avoid that consistent "help".

Heck of a way to live, I suppose, but that's what we get, I guess. I really wanted that ideal steady maintenance dose, but unfortunately it doesn't flip the switch. Not anymore, anyway.

Lets hope your new dose of Nplate works and eventually you take less and it still works, etc.

I think that I will do the 2 week or so high dose pulse of ple, and skip trying on the maintenance, since it doesn't seem to flip the switch anymore. I will try to stay between 140 and 500.

So we are continuing to try Nplate with higher dose and in addition a bit of prednisolon (cortison). Currently I have all my signs of low platelets plus the sideeffects of issues with sleeping and headache. 
As far as I understand we aim for below 200 platelets because the risk of thrombosis gets too high otherwise. 

 
You know, what's really interesting, is that if I look at my platelet trends, the up-slope angle is always nearly the same (except that my papaya leaf combined with dexamethasone was slightly less steep than without dexamethasone, which doesn't speak so well of dexamethasone). And my down-slope angle with my papaya leaf maintenance dose efforts, is nearly the same.

Sooo..., its like a switch is turned on and off. I only had one good level line in 10 months. So, how do you keep the switch on is I guess the question. How much papaya leaf extract does it actually take, for maintenance? Its that switch! My effort now is 4 pills every 3rd day. Its a constant battle, as they say.

Put a slightly different way, when I am gaining, I always gain at the exact same rate per day gain of platelets, and when I am losing, I lose at the same rate per day loss of platelets. But, I gain quicker than I lose, fortunately. One time though I went from 4 platelets to 8 platelets in a week. So maybe there I did a little more losing, and then toward the end of the week, the switch was thrown and it started to gain. Maybe.... Its a little surprising that the gains are so consistent, since I often don't have the full week to make the gain, since I start the papaya leaf extract late, but I guess maybe I have been consistent actually with only having 4 days for it to actually increase. So I guess that's why it has been consistent.

Again, how do I keep the switch on? And if the switch is always on, won't that send the platelets sky high? Or will the natural governor take effect. Do I still have a governor??? Maybe the dexamethasone is more of a balancer than an impressive increaser. Interestingly, when combining dex with papaya leaf extract, the next period has been more of a level line, both times. So maybe the answer is a low dose prednisone with the papaya leaf extract. But are the side effects actually worth it, when I can get along with the up and down of papaya leaf extract on its own?


 

Well, since you're wondering about what's next, my super-reactive (for me anyway) "drug"  (supplement, sounds weaker than it is) is papaya leaf extract.

Oh yes,  now I see that Nplate shoots for 50 to 200. Good to know. And I see eltrombopag has the exact same rules for platelet range. My "drug", at this point anyway, does not have such rules. I'll take that as a plus. Although some will say that papaya leaf extract is too "unknown" to have  such rules. My "drug" has only shown numbers between 50 and 200 maybe only 2 times. I mean I remember 77, 168 and 202. It seems to like my number between 350 and 477, but who knows if that's higher than it should be. I know I'd rather keep it in range.

I didn't know that you could drop from high to low in one day.

Yes, facebook is a place I stay away from, so far, too.

Thanks for your reply Itpjourney. 

For me my platelets can drop from high to low within a day even with prednisolon or dexamethason. Fortunately I am very good at predicting my platelet level by observing my body. So I know exactly when I need additional blood tests to my currently usual weekly ones.

I am sorry to hear that you seem to have a doctor that doesn't take your concerns ceriously enough.

Which "drugs" do you use?

Currently with TPO we try to reach the range of 50-200 platlets. In an hour I will know if we continue trying TPO or need to change therapy yet again.

This forum seems quiet. There are many subtopics with no new messages in years. Does anybody know of other exchange platforms that are more active? Unfortunately I don't have facebook though maybe this will finally be the thing that gets me to create an account.

Sorry, don't have experience with TPO agonist drugs. I'm certainly used to platelets being hard to control, though. I know what you mean when you say "worked too good, then not good enough". My "drug" has acted like it was letting me down, but then I figured out it was me not taking it correctly. 

Basically, I take the test only every couple of weeks when the platelets are high, but its not really often enough, if you look at my trends. You can drop from high to low in 2 weeks, even with some drugs, if its not enough of the right "drug". And there must be some hidden factors, such as infection that make your body require more. Maybe even seasonal allergies? If you require more than what you're taking, your platelets are going to drop. Its a very sensitive thing, apparently when using TPO agonist type drugs, too, if you're any indication.

My doctor sees my fluctuations, but doesn't suggest I take the blood test more often (when the platelets are high). It's almost like he wants them to go low. I don't feel its life or death, but its not the quickest way to really really figure things out. I do understand if its just trying to keep insurance happy. It takes months, or maybe its so sensitive and having other factors, that you never really get it figured out. Those unknowns will always be the wildcard, maybe. 

One way or another, you're dealing with the unknown, and that is frustrating and a bit scary to think your options are dwindling. Like you say your hopes are dwindling when you see the surprises. I mean the disorder is not always difficult, but it is at times. Maybe it will get easy around the corner, or maybe it won't. 

I've been at it for 10 months. I've figured out some things, as long as a curve ball isn't suddenly coming at me, but its still pretty full of surprises when trying to keep steady. That's the hardest part. Getting the platelets up is easy (for me), but I don't look forward to the times when I have to get them up. Fatigue and frustration are always in the mix at those times. 

I would like to get the steady part right, partly because when the doctor wants me to get the platelets up, I feel pressure to get them up fast, since I'm not using his drugs. So I use far more "drugs" to get them up, than to keep the platelets steady, and I don't want to take more than I have to. Of course, I really don't want the platelets to hang around on the low end myself, either, so I have to take the bull by the horns, at that point. Its an interesting dynamic, for sure;  platelets, real drugs, my "drugs", physician, blood tests...

All to hit that nice sweet spot in normal range, which, with TPO agonist drugs is not something you're necessarily shooting for the middle of, are you? Isn't NPlate supposed to be shooting for 50? I can tell you with my "drug", it would really be  hard to stay around 50. I don't think I could do it. Mine is too reactive. 50 is not a natural number for my platelets on my "drug".

Hi all,

This march I got diagnosed with ITP (again, had it in 2013 already but then responded well to cortison and it went away). I did respond to cortison therapy but my platelets droped again to single digits (I believe in the US you would call it a few thousands) while still on cortison. So we first changed to Revolade (Eltrombopag) which I alternately responded too well or not well enough for a few weeks until stopping to respond at all two weeks ago. Since then we changed to Nplate (Romiplostium) which again I first responded well but now noticed again petechia. My usual low platlets symptoms are bruises, petechia, fatigue, strong menstruation and blood vesicles in the mouth (sorry for the word to word translation from german, don't know the native english word). So the up and downs of hope together with the once to twice a week doctors appointments are quite heavy on my energy and mood.

I was wondering if there is somebody around with a similar journey. I know how much it helped me to talk to other autistic people when I got that diagnosis so trying to get the same benefit here.

Cheers,
Franziska

PS: I am 31 and from Switzerland.

Ok, I understand that what I just said there, "50 fold increase of platelets in 4 days" is considered Extremely UNLIKELY FOR ANY METHOD. So, just tried to show the proof. I had a nice shrunken screen shot of my platelet trends, and it was beautiful, sitting in my new post window, but when I posted it, it was a 100 lines of jibberish. Oh well...

So you're just going to have to believe me (which you probably won't), that papaya leaf extract is very very efficient, going to all the best places (megakaryocytes, etc.), at raising platelets. That's the goal, isn't it? Your mileage may vary.

So, I got the test back in a week, so that wasn't too bad. 76 Thrombopoietin for a normal range of 7  to 99, so I believe that this does not rule out TPO agonist drugs, since it is not seriously elevated. Good to know, in case...



   

Yes, things like this are scary, for sure. A bone marrow biopsy may be helpful...

My MPV is between 10 and 12, which actually doesn't stand out  to me, since my lab considers range up to 12.5.

Not much else to say, except, good luck with your potential bone marrow biopsy! I hope it all works out. You're at a tough time, where things have not been figured out. 

Hello, a cbc a recently revealed low platelets. Platelet counts over multiple tests over 6 weeks were 84k 101k 81k and 103k. Three different manual reviews noted slightly different things: “giant platelets”, “platelets vary in size” and “large platelets present”. The one that noted giant platelets also showed an MPV of 15.3 (range 6.1 to 9.7). All other blood cells were normal. I met with a hematologist who thinks it’s chronic, stable ITP. Has anyone else had ITP present like this?

It worked out waiting to do the test, although I haven't gotten the test back yet. But 4 days of papaya leaf extract, even after waiting 3 days for the thombopoietin test, got me up past range to 477 after being most certainly 10 or less. Potentially 50 fold increase in 4 days. But I do have the emergency dexamethasone if I need it now. Not that I have proven that it even works by itself. So, does dexamethasone work? Not sure. Does papaya leaf extract work? YES. Through the 9 months of having this, papaya leaf extract is the only thing that I have taken on its own, so therefore the only thing that I can say definitely works.

Turns out this thrombopoietin test is like no other. I may have to wait over a month for the result.

Its all somewhat confusing, but the lab does have similar wording to the original idea here, saying that it is a waste of money if you take tpo agonist drugs when you have seriously elevated thrombopoietin. So yes, there is a reason for the test.

Before I take this test, I'll just throw it out there that my doctors seem to think that itp is all about destruction. So, I think they expect the test to show plenty of thrombopoietin, but they think you can still throw tpo agonists at it to balance things out. They are not happy enough with the test to really spell things out for me very well. When you try to make decisions for yourself, this is what you get. I guess you have to expect this when you go against the grain.

Now, if you google "If you have a platelet production problem, is it still ITP?", this is  what you get from AI; 

No, a platelet production problem is not the same as Immune Thrombocytopenia (ITP).  ITP is an autoimmune disease where the body's immune system attacks and destroys platelets, leading to a low platelet count.  While platelet production can be affected in some cases of ITP, it's primarily a problem of platelet destruction.  Other conditions, like aplastic anemia or blood cancers, can cause low platelet counts due to problems with platelet production, but these are not ITP. 

So, this agrees with my doctor saying that he doesn't think my affliction is related to the thrombopoietin test.