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.

Now, my platelets are low and my monocytes are high, which goes along with this:

pubmed.ncbi.nlm.nih.gov/37214993/

Or does it? "Monocyte dysfunction" is not really explained in numbers in this publication, is it?

Well, level line did not continue. Platelets went way down,  possibly due to allergy season. My maintenance dose did not cut it, anyway. Only good thing, I think it will give me a chance to take that thrombopoietin test, which in my estimation, should be taken when platelets are low, and not on any medication. Laying off on papaya leaf extract for a couple extra days, to help the test. 

I have the test ready for if and when I get low platelets again. Now, if you google with AI if papaya leaf extract is a tpo agonist, you get yes, and many other details. So, if you look at papaya leaf extract as a tpo agonist, and since it works for me, it would suggest that my TPO test will suggest a shortage of TPO, away from using the supplemental PLE, of course. But, I guess its still worth doing the test...

Be aware, there are two TPO tests. One for thyroid peroxidase,  which is not the one you want.  You want the thrombopoieitin test.

I would find another hematologist. No one knows your body like you do. If you know that is how your body reacts when you have a virus and you have had counts in the single digits, that is nothing to mess around with. It is imperative to find a hematologist that will work with you.

 Being able to differentiate between the different types of ITP can really help many people avoid unnecessary treatment. It is worth everyone's attention and further discussion with their doctor. 

From  slope game ,

Hey Janet. Thank you! Great I have some allies. I have read your incredible story and hope I achieve remission too 

Itpjourney, thank you too! I see you are quoting an article on that (same as doctor). The argument is that we have a comorbidity. That means other side of the story is suffering a low count and/or being hospitalized. I live alone in another country and it is so inconvenient for me. Understanding all these risks and benefits, I should be the one who decides on that. I have scheduled a trip to my school city to visit my previous (lovely, democratic) doctor to refill some of these quality of life medications.

I can't help you with that as I'm in NB, but I know there are a couple of members from Alberta. Hopefully one of them will see this and let you know.
Good luck.

I'm recently diagnosed - 6 weeks - and have had a roller coaster of 3 hospitalizations in that time period.   Was referred to the on call hematologist at 1st ER visit.  Currently on Rituximab and it seems to be working so far after 2 treatments.  I am wondering if anyone knows of a hematologist in Calgary who is familiar with ITP.

4 papaya leaf extract pills every 4th day has finally given me a level line trend at a good high number in the upper 300's! I got a bit aggressive, thinking my number might be too high, but it worked! First time I have felt that I have found my maintenance dose. 

I tried this same thing in February, 3 months ago, and got a 300 number, but it was up from before and I mistakenly thought that it was too much, or should I say I thought it was more than I actually needed to take? I would rather take less if it would work, but I'll take it. It's been 8 and 1/2 months to get to this point, 7 months using papaya leaf extract and searching for the combination. 

This here may agree with the doctor:  www.sciencedirect.com/science/article/abs/pii/S2468867321000754

I would go with papaya leaf extract, but of course that's just me, knowing it works for me. I would think that going for the prednisone because of illness could be bad timing.

I do certainly believe in having options, though, so you need the right help from your provider. 

If you suddenly see the bruising, petechia and mouth sores etc., you pretty much know your platelets are low. I have even cancelled a trip to getting a blood test once, because those symptoms told me the platelets were low. That would be the time to have your safety net in place, as you undoubtedly know. I'm not that familiar with sickness bringing on low platelets, but it sounds like you have that experience.

Actually, I should state that a month ago, I did seem to have some kind of quick bronchial infection that did coincide with a surprise plummet.

I am in your boat a little bit, too. After using my dexamethasone that was ordered 6 months earlier, I ran it by the doctor that it  would be nice to have a refill, he ignored. I haven't asked again. At least I have the papaya leaf extract as the net, but it would be nice,  even so, to have the dexamethasone on hand, too!

Doctor agrees that the medications stimulating the bone marrow are what's up with the myelocytes, so no problem.

I strongly agree with you on this. You've found a method that works pretty well for you. I personally use a variation of it by taking a short, low-dose course of prednisone to ensure a safe count before an invasive test or procedure. 

Those of us who've been dealing with ITP for a long time know it doesn't have a one-size-fits-all treatment plan. So, when we find a plan that brings safe counts while causing the least amount of side effects and - not inconsequentially - alleviates the expense of hospitalization, it only makes sense to stick to it.  I've always stressed the value of finding an open-minded, cooperative hematologist to partner in treatment instead of a dictatorial one.

You can try to diplomatically work on changing his mindset. That sometimes works. I hope it will for you.

Hey,

I was once hospitalized in 2021 for a very minor viral infection, where my counts dropped into single digits, and I was sent to the hospital.

Ever since then, I have taken this rescue prednisone regimen. A few other instances of such infections also showed me that counts can drop very quickly, matter of hours. You wake up in the morning, look into your mouth, and see symptoms.

Now this new hematologist does not believe in that. Past two doctors were ok with it. He says it could cause the flu or whatever the ongoing infection is to spread. He wants me to take a test to see if they are dropped, then only to be prescribed prednisone. 

This is very inconvenient since I live alone, and it is very scary to be in such a situation. Also lab currently takes multiple days (yeah, read it correctly) to give results. Even with a fast lab still it is still very inconvenient to disrupt my life and work to do that, as there is no guarantee when they will drop. What do you do? Take a CBC daily when you are sick to avoid a bit of prednisone?

His other suggestion was taking IVIG, but again very inconvenient due to the administration time and insurance approval for a viral infection. 

Are all these worth avoiding prednisone for a week? I usually just take 20mg for a week or so. I simply don't buy his argument as I know you guys have prednisone in your arsenal.

lauralordelaure wrote: It’s possible you may not need immediate treatment if your only symptom is easy bruising, but your low platelet counts (19–21) suggest a discussion with your hematologist about risks versus benefits is crucial. Non-steroid options like TPO-RAs or Rituximab could be safer for your bones, and optimizing osteoporosis management (e.g., bisphosphonates, calcium) is key if steroids are used. Share your concerns about bone health with your hematologist to tailor a plan that balances both conditions.

In my opinion, this moment for a new patient should be addressed with a hematologist, like you said.  
 
Then, the thrombopoietin test could be telling, before any medication, to see if there is a shortage of thrombopoietin which is responsible for platelet production. This will help you, I believe,  on second line drug choices down the road if options start running out.
 
Then try papaya leaf extract and adjust dose with the bi-weekly blood tests. If you find this works, then you have your maintenance and your safety net if the number drops further, to keep you away from the steroids, and/or hospital. 

Of course, don't expect complete acceptance of the papaya leaf extract from the hematologist... Its something that can't be denied, when it works, but their curiosity is often limited. You need the blood tests, so hopefully you find a relationship that works. He will watch the numbers, and as long as they are not going into the low serious zone, things should be good.

It’s possible you may not need immediate treatment if your only symptom is easy bruising, but your low platelet counts (19–21) suggest a discussion with your hematologist about risks versus benefits is crucial. Non-steroid options like TPO-RAs or Rituximab could be safer for your bones, and optimizing osteoporosis management (e.g., bisphosphonates, calcium) is key if steroids are used. Share your concerns about bone health with your hematologist to tailor a plan that balances both conditions.

So, a new test, new worries, but maybe still ok. My myelocytes and metamyelocytes were suddenly measured at the lab. This was scary for me because I see these results and they are considered high for existing in the blood at all! 

Well, here is my hope; I hope that these myelocytes and metamyelocytes are being released into the blood because of the stimulation of the bone marrow by the papaya leaf extract (and the recent dexamethasone, which together raised my platelets by 48 fold in one week). My white blood cells and red blood cells are ok.

Hopefully it will be business as usual for my papaya leaf extract maintenance dosing. Anyone else have any experience with their supplement/drug raising their myelocytes as the bone marrow is stimulated?

Never mind, platelets came back up extraordinarily with dexamethasone and papaya leaf extract, in one week. I have seen the dex not work on its own, so I give the credit more to the papaya leaf extract, that I mixed (pills with food) with less food, than I have been lately. Will say that it seems that the papaya leaf extract and dexamethasone do work pretty well together. Numbers came up by almost 50 fold, since my number was only 8, last week.

I try to be clear on this, so, I just raised my platelets but not in the impressive way I have in the past. I only know by my numbers, and, while I just doubled my numbers, they were very low, so going to take dexamethasone. I have avoided this for 6 months, but can't deny the papaya leaf extract is not working as well right now, for whatever reason. Maybe the body has figured out how to fight it, bad batch, can't mix it as much with food, I don't know.

That's great Janet! Were those two steroid shocks Dexamethasone pulses of say 40 mg, 4 days in a row? Just curious, since that's common for ITP. I realize though that you said it was a treatment for something else.

 Yes, I did get a headache when my platelets went down last time, for one night.

Good to know about the sleep number bed! Thank you for sharing your observation!

I’ll give an update to my own thread.  So, best as I can tell (hard to as Anthem and Northside hospital system were fighting at the time of my last treatment) 4 doses of Truxima cost $57k or so  (in terms of what Anthem paid out).  This time around it seems 4 doses of Truxima of 880 mg each are going to result in Anthem paying $64k  (16k each).  Ug.  And the nurses in the infusion center call Truxima a cheap medicine!   If Northside had their way they would be getting closer to $200k or something stupid. I don’t know where they get their numbers as they know what is contracted but still try to bill crazy stuff thinking somehow the insurance carrier might pay it.  

Anyways, no idea how this compares to things like N-plate. Hoping I never have to find out.

Possibly.  I waited too long this time and got all the way down to 2k when I finally tested. Bad, bad of me.  Won’t be doing that again.  Luckily I responded well to Prednisone so they gave me that and sent me home instead of over to the hospital.  Anyways, I did not see any Petachia until just before testing.  So yeah, my main indicator is actually bleeding in my nose that I need to pay careful attention and fatigue. I was very tired the few weeks before and should have taken that as a sign to go get a cbc.  HRV, maybe. Probably. I actually have a sleep number bed that measures that and it did say HRV had changed so… Still so many things affect that that I don’t think it’s anything other than a secondary clue to the more obvious ones like my nose and gums bleeding. I just got lazy about it…

 So I can only offer anecdotal evidence that maybe Truxima is not as effective. You tell me.Here is what I have had:

1st time - 2 doses of Rituxin (basically 1/2 of normal). Remission lasted little over 2 years.
2nd time - 4 doses of Rituxin (ie: full dose).  Remission lasted 5 years.
3rd time - 4 doses of Truxima. Remission lasted 3 years
4th time - 4 doses of Truxima, undergoing now, just finished 2nd infusion.  Remission length? We’ll see.

Like you said though they won’t give me Rituxin just because i ask, it’s all up to the insurance what they would pay for.  I guess if Dr. believed it was better he could try and advocate for it but I don’t know the evidence is there.