ITP Diagnosis: My First 33 Days

Quick intro. I’m 40, male, and until recently, my platelet count was cruising in the normal range. Then — boom — it dropped to 7. Out of nowhere. Lucky 7! Could had been much worse 

The day before that number came in, I was living full throttle: gym, deep-tissue massage, sauna, and swimming against the current in a river. Not exactly what you'd expect before a total immune system plot twist.

Now I’m a patient. Diagnosed with ITP. First month has been a ride. I’ve been through Medrol (metaprednisone), Dex. Also started Endoxan (chemo). So far, no real breakthrough.

I’m extremely happy with my hematologist — sharp, communicative, and grounded. But even he’s said this kind of resistance to steroids is so rare in his practice. 

At this point, I’m exploring options, digging into what’s next. 

If anyone have ideas to , I'd truly appreciate it.



Medical History up to June 2025:

Blood tests consistently normal, platelet count ranged from 232–273 ×10⁹/L.

09.06.2025 — Sudden onset of multiple petechiae following a massage, platelet count dropped to 7 ×10⁹/L (automated count).

Subsequent progression:
Platelet levels remained low (7–38 ×10⁹/L) despite standard steroid therapy (Medrol up to 72 mg
Possible Causes Considered:

Medication trigger:

• From March to May 2025, the patient took venlafaxine, amitriptyline, high doses of omega-3, nimesulide (20 sachets over 3 months), ibuprofen, and various dietary supplements on a course basis.
• The last dose of nimesulide was 10 days before the appearance of petechiae.
• Medications were prescribed to treat tension-type headaches under the supervision of a neurologist.
  

Prolonged immunosuppression/imbalance:

• Possible reaction to the combination of antidepressants with NSAIDs and supplements, or idiopathic autoimmune disorder.

Excluded causes:

• Infectious, oncohematological, and systemic diseases were ruled out (screening conducted; BCR-ABL negative; viral markers and rheumatologic panel — within normal range).
  

Treatment Administered:

• Medrol 72 mg
• Revolade (Eltrombopag): started at 50 mg on 23.06, increased to 75 mg on 05.07
• IVIG course: 24–27.06, 50–100 mL/day
• Short course of papaya extract: 29.06–04.07
• Endoxan (Cyclophosphamide) added on 05.07
• Switched from Medrol to Dexamethasone starting 06.07
  

Laboratory Dynamics:

• Automated/Fonio counts: fluctuating between 7–60 ×10⁹/L, brief increase to 98 on 01.07, then trending downward again (latest result on 11.07: 9 / 30).
• Platelet anisocytosis observed under immunosuppression.
  

Additional Notes:

• General condition satisfactory: no bleeding, hematomas, or infections.
• All standard viral markers, biochemistry, and systemic disease screening — within normal limits.

Well, you see, right?, that your highest platelet level dropped immediately when you stopped taking papaya leaf extract. 

Are you afraid of papaya leaf extract for more than 5 days? I know there is that one warning on the internet about safe for short-term use, 5 days, but I personally don't go by that.  

I think the main issue is that there’s very little evidence supporting the use of papaya in treating autoimmune ITP since most of the existing research focuses on secondary ITP caused by other diseases, especially dengue. So, it's really hard to say whether it actually helped me, especially since I was also receiving IVIG at the same time.

That said, I am considering using it long term. The only thing that concerns me is the possibility yet very little that it could trigger an autoimmune response. Still, there's very little evidence of that, and it wasn’t mentioned in any of the studies I reviewed.

For now, I just want to isolate variables and see what actually works for me. Once I'm in a relatively safe zone—maybe with platelet levels well above 40 I’ll consider trying papaya again. With this condition, it always seems to be a process of trial and error.

And I'm seriously happy it works for you! This thing is strong!

And I just realized it was your post from earlier that inspired me to use it. So thanks again!

I read a lot about it, but those were your words that made me try it

Now, you say that your hematologist is surprised at your lack of reaction to steroids. I see, I believe, you are taking a one-time dose of dexamethasone, first at 9.5mg and another day just lately of 11.5 mg. Which is not much steroid. Am I seeing this correctly? My hematologist believes in the popular 40 mg 4 days in a row pulse of dexamethasone, and doesn't think that 40 would even work for me in a one-day dose, which I suggested could work. 

I find papaya leaf extract goes well with dexamethasone. Especially when I'm getting a little hit and miss with papaya leaf extract on its own. Sometimes though, papaya leaf extract doesn't need dexamethasone. In fact, I rarely use dexamethasone, although it would make things more predictable, it seems.

Sorry for the confusion but those vertical bars mean that I started taking it, so it just marks a start.

I was taking these meds every day since the start, first Medrol then Dex 9.5mg, 11.5 lately.

And yes, I did hear that combination of dexamethasone and papaya worked the best, going hand in hand.

Latest labs from yesterday came with 16/36, going up!

I just raised my platelets from 12 to 505 in the last week. 

But, I suppose that is why you wouldn't want papaya leaf extract at this time, since you're shooting for 200 or less, for fear of blood clots from eltrombopag.

Not all rosy here, either, though. If I don't play my cards right, I could be back to 5 in less than a month. Its getting hard to flip that switch to the high platelet production. And the doctor is pressuring me not to let it get that low, yet I'll have to ask in a couple weeks maybe if I can have a weekly blood test... 

Never have dared ask for a weekly when I'm in range, even though it has become obvious to me that mid-range is just in the middle of a big drop to the basement. I even realized what was going on last time, took a pulse of papaya leaf extract, 4 pills 4 days in a row, but still got fooled. Turned out apparently, that the pulse didn't do anything because it apparently didn't flip the switch. That's the constant roller coaster that I have been on. Dexamethasone has smoothed it, but I don't want the side effects to add up in me.

Here's an update on my progress. Pushing the lever!

What really seems to contribute is chemo + dex. But fingers crossed that's my body starting to realize something too.

Also, talked to two more hematology doctors, both pointed out that Helicobacter is in an active phase and can trigger ITP (well-researched), so here we go, we started eliminating it.

how can I delete a reply on this forum once posted? Accidentally replied twice. 

Itpjourney wrote: I just raised my platelets from 12 to 505 in the last week. 

But, I suppose that is why you wouldn't want papaya leaf extract at this time, since you're shooting for 200 or less, for fear of blood clots from eltrombopag.

Not all rosy here, either, though. If I don't play my cards right, I could be back to 5 in less than a month. Its getting hard to flip that switch to the high platelet production. And the doctor is pressuring me not to let it get that low, yet I'll have to ask in a couple weeks maybe if I can have a weekly blood test... 

Never have dared ask for a weekly when I'm in range, even though it has become obvious to me that mid-range is just in the middle of a big drop to the basement. I even realized what was going on last time, took a pulse of papaya leaf extract, 4 pills 4 days in a row, but still got fooled. Turned out apparently, that the pulse didn't do anything because it apparently didn't flip the switch. That's the constant roller coaster that I have been on. Dexamethasone has smoothed it, but I don't want the side effects to add up in me.

What a ride!

I'd rather want something smooth between 100-200, slow and easy. But not too slow, my current dex can last for 8 weeks, tops. 

Dare to ask, how long rate you on dex? 

You are so responsive to Papaya, I may come back to it, but problem is that I'm already on three meds and it's really hard to isolate them and tell which one is working. So probably papaya is desert, when PLT go above 100.

Hope your plt levels are better now. Mind sharing? 

Your time lines are a little off between charts. Your first chart showed peak platelets at 4th of July., end of papaya leaf extract. Your second chart shows peak platelets at 1st of July, which is in the middle of your stint with papaya leaf extract. 

I have always done 40 mg 4 days in a row of dexamethasone. I have done this 4 times, I think. I have some on hand now, in case I "need" it. I thought the daily would more likely be prednisone. But, maybe it doesn't matter, just take less, since dex is stronger than prednisone. 

I haven't had a blood test since last week's 505. Again, when its high, I try to skip the weekly blood test, since the doctor doesn't get concerned until its low. If next one is in the middle though, then it will have my attention, and I may ask for a weekly then, explaining it to the doctor that mid is always on the way to low. I'm onto what its doing now, so eventually I should figure out a better way to address what its doing.   

Of course, my average platelet count is in the middle, but if I get more aggressive about keeping it out of the basement, that will mean spending more time high. So that is questionable, too. I am starting to take some natural blood thinners, which also may help stop destruction, so they could help when the platelets are high, to fight clotting.

I guess we are examples of opposite ways to fight ITP, if anyone is watching. Your way is certainly better in some ways, but not every way. But even though papaya leaf extract reactivity is not in question, I still haven't proven it to be completely viable in a maintenance kind of way. Thanks to that stupid switch. And your medicine seems to use a different system that doesn't have the sensitive switch. But, I don't think my papaya leaf extract switch is as over-reactive either, if I were using a prednisone.

One thing, I wouldn't like, if I started using the expensive TPO agonist type, is if I still needed a prednisone. If that were to happen, then I would just think that I should be using a prednisone consistently with my papaya leaf extract. That would have to be my next choice, I suppose, using a prednisone WITH the papaya leaf extract. I guess I would not have patience for the TPO agonist if I see myself still needing a prednisone. 

I guess a large part of my game is, what can I do without prednisone (dex, etc.)? Still unanswered...

 

 

 

  

Hi, haven't read all you wrote but thought I'd just chime in and tell about my story in the last few months. I didn't respond enough to cortison either. Revolade worked for a time but then stopped doing so. Now I am on Nplate as well as a low prednisolon dose (10mg) and so far it is kind of okay. still need to increase the dosage every few weeks but the timespan is increasing. My hope is that once I managed to get off my SSRI antidepressiva (which is suspected to be able to negatively impact platelets) I will be able to get stable on Nplate alone.