Hi all, my 7 year old son has a rare genetic syndrome called Kabuki Syndrome, he get ITP whenever he has viral infections, sometimes during the infection and sometimes a week or two after the infection has gone.

We gave him 2ml of Papaya leaf extract for the past 7 days, looks like it increased platelet counts and purple dots have faded, but we can see them back again meaning platelet count has gone below 10 again.

We are wondering how long and how much of the extract do you guys give to your child, and when do you stop?

Regards,
Dean

Hello Everyone! Sure its going to take a while before there is anyone here, since personally, I didn't receive an email that the forum can be written on now. Just happened to look. 

Well, a lot has happened personally for me!

Back in October 2025, I was having another dip in platelets. I noticed at the time that I had 9 cycles thus far, going from way under 10 to over 500, and often enough blood tests to see that the cycles may be about 39 days long. That unbelievably consistent cycle was the key for me.

So, my hematologist was telling me that I should get a platelet transfusion. I commented that I, honestly, had been thinking I might have CTP, cyclic thrombocytopenia. His only answer was that it is ITP and my choice of treatment would be Rituximab or Promacta. So obviously, he didn't see it as cyclic, but he never said why. I presume that it was because he was convinced that my papaya leaf extract self-treatment was raising it, but I had told him that the papaya leaf extract was powerless to stop the drop.

So his reaction or lack of one, forced me to a second hematologist, who had never heard of CTP. So, this hematologist gave me the benefit of the doubt and "forced" me to go through a cycle with no medication. I freaked out when the platelets got low next to Thanksgiving, but he held me to the no medication. I survived and that cycle, which went from under 10 to close to 300, was pretty much the proof that it was CTP, but things ended shortly after with that hematologist, due to insurance reasons, so I did not get a lot of words from him or a new diagnosis, or any suggestion of medication.

So Dr. number 3 now. He did have one mentor that had a patient that "maybe" had CTP. So we've gone through another medication-free cycle, from 1 or less, to 420. He wasn't up on medication with my first visit. I have suggested cyclosporine A potentially, but I have to get together at some point to discuss. He does say that the platelet trend is definitely cyclical. Didn't quite say I have CTP, but close enough. Seems, to be a hesitancy to put it into the words, "YOU Have CTP". 

So there you are. My suggestions of papaya leaf extract were at least somewhat wrong, and I'm sorry about that!  I haven't had any PLE since November 10th. It may have been pushing the count higher along with the cycle of thrombopoietin (TPO), but in this case, it may have not been "helping". (It would still be nice to know if PLE keeps me out of the dip somewhat, but its impossible to know that, since the numbers shoot up with the natural TPO cycling). 

So, one thing is more sure, I have a handle on what the cycle is doing. The dip is even more scary though. Last dip, I spent 8 days under 10, down to a count of 1 or less, and am feeling like I have to be careful with it more since I know I'm not taking medication. Still have avoided the hospital, since my symptoms are actually quite minimal.

Of course next thing, since the platelets are going so low, is trying a medication. That will be its own challenge, but many of you know how that goes. 

I don't know if I should start a new forum identity, or just point out every time that I have CTP and not ITP... Of course I can't just say CTP, I would have to say Cyclic Thrombocytopenia. ITP patients can go years before realizing that they have CTP. It is extremely rare, but it still needs to be known its a possibility, when you see fluctuations. Especially fluctuations when not taking TPO drugs. 

Given that Nplate is still maintaining counts above critical levels and you have no active bleeding, it may be reasonable to discuss continued medical management or newer agents before committing to splenectomy Geometry Dash . A second hematology opinion could help weigh long term risks versus benefits.

This does sound exciting;  www.medpagetoday.com/meetingcoverage/ashhematology/113278

To reduce auto-antibodies... Sorry, I had a page that did not require sign-up...

So there you go. You can see how the hematologist thinks. He starts second line with Rituximab because he wants to see remission. Then he tries all the tpo agonist drugs, and still is hoping for remission. After 3 years he thinks its time for splenectomy. This is the formula. 

Of course, it would have been nice if a doctor could consider papaya leaf extract, but yes this is the doctor formula for absolute effort at remission. Just left out one thing...

Interesting stuff.

 

I can't speak of most of the meds you've listed as I haven't taken them.  I have done IVIG, Prednisone and Rituxan.  None of us are qualified to tell you what to do next, we can only suggest.
I had a splenectomy in 2006 and haven't had any serious issues because of it.  The only vaccines I get are my flu shot every year.  Naturally when Covid hit, I was extra cautious and even now when I go into a store, hospital or my doctor's office, I wear my mask.
I did the Rituxan in 2011 and it put me in remission.
I would suggest if you're not convinced about the splenectomy, then don't do it.  It was recommended I do it when I was first diagnosed, but I said no.  It was 2 years before I told my doc I wanted to do it.
Good luck and keep us posted. 

Hi All,

I am a 33 years old male who was diagnosed with ITP (Immune Thrombocytopenia) in April 2022 and since then I have undergone multiple lines of treatment for 3+ years as shown in chronological order below:

1. Prednisone (60mg to 5mg) for 8 weeks.
2. Rituximab IV (Truxima - 720mg dose) for 4 weeks.
3. Promacta (50mg, 75mg) for 5 weeks.
4. Nplate (1mcg/kg to 10mcg/kg) for 3 years from June 2022 till June 2025.
5. Doptelet (20mg/day to 40mg/day) for 5 weeks from June 2025 till July 2025.
6. Tavalisse (100mg - 2 per day) for 3 weeks in August 2025.
7. Received 1 unit of Platelet Transfusion (Plateletpheresis) on August 26th, 2025 as my platelet count dropped to 9000 on August 25th, 2025.
8. Took Dexamethasone 4mg (10 per day) tablets for 4 days from August 26th, 2025 till August 29th, 2025.
9. Resumed back to Nplate (10mcg/kg) on September 2nd, 2025 as it was the most effective treatment to keep my platelet count close to and above 50k for most of the time.

My most recent platelet count on September 2nd, 2025 is 16000.

At this juncture, my hematologist is recommending for Splenectomy as the next step as different lines of treatment have failed and Nplate was not helping with remission effectively even though it's keeping my platelet count above 50k for most of the time. I don't have any active symptoms of bleeding anywhere, apart from slight body weakness or tiredness when my platelet count is low. Also, my other blood parameters are all normal except for the platelet count.

I understand that Splenectomy has only 70% to 80% success rate for platelet remission and post Splenectomy, I may become more susceptible to different bacterial infections and I need to take frequent vaccinations to protect against them. 

Considering I don't have any active bleeding symptoms and the risks tied to Splenectomy, I would kindly need your help in reviewing my treatment, platelet count data and help provide any possible next steps of treatment without Splenectomy.

Looking forward to hearing from you. Thank you and have a great day !

Hi All,

I am a 33 years old male who was diagnosed with ITP (Immune Thrombocytopenia) in April 2022 and since then I have undergone multiple lines of treatment for 3+ years as shown in chronological order below:

1. Prednisone (60mg to 5mg) for 8 weeks.
2. Rituximab IV (Truxima - 720mg dose) for 4 weeks.
3. Promacta (50mg, 75mg) for 5 weeks.
4. Nplate (1mcg/kg to 10mcg/kg) for 3 years from June 2022 till June 2025.
5. Doptelet (20mg/day to 40mg/day) for 5 weeks from June 2025 till July 2025.
6. Tavalisse (100mg - 2 per day) for 3 weeks in August 2025.
7. Received 1 unit of Platelet Transfusion (Plateletpheresis) on August 26th, 2025 as my platelet count dropped to 9000 on August 25th, 2025.
8. Took Dexamethasone 4mg (10 per day) tablets for 4 days from August 26th, 2025 till August 29th, 2025.
9. Resumed back to Nplate (10mcg/kg) on September 2nd, 2025 as it was the most effective treatment to keep my platelet count close to and above 50k for most of the time.

My most recent platelet count on September 2nd, 2025 is 16000.

At this juncture, my hematologist is recommending for Splenectomy as the next step as different lines of treatment have failed and Nplate was not helping with remission effectively even though it's keeping my platelet count above 50k for most of the time. I don't have any active symptoms of bleeding anywhere, apart from slight body weakness or tiredness when my platelet count is low. Also, my other blood parameters are all normal except for the platelet count.

I understand that Splenectomy has only 70% to 80% success rate for platelet remission and post Splenectomy, I may become more susceptible to different bacterial infections and I need to take frequent vaccinations to protect against them. 

Considering I don't have any active bleeding symptoms and the risks tied to Splenectomy, I would kindly need your help in reviewing my treatment and help provide any possible next steps of treatment without Splenectomy.

Looking forward to hearing from you. Thank you and have a great day !

www.news.sanofi.us/2025-08-29-Sanofis-Wayrilz-approved-in-US-as-first-BTK-inhibitor-for-immune-thrombocytopenia

Seems to be only available to "you" if you have failed on another treatment. Does that mean just Retuximab or TPO agonist drugs, as far as other treatments?

It beats the placebo, so sometimes works...

Yeah, mushrooms seem to be the anti-platelet. 

pmc.ncbi.nlm.nih.gov/articles/PMC6950045/

No experience and wouldn't take them!!

"Who shouldn't take cordyceps mushrooms?

Don't take cordyceps if you have: Cancer. Type 2 diabetes. A bleeding disorder (or are taking blood thinners)"
www.webmd.com/vitamins-and-supplements/cordyceps


"Who should not use reishi mushrooms?
AI Overview

Certain individuals should avoid or exercise caution when using reishi mushrooms due to potential risks and interactions. Specifically, pregnant and breastfeeding women, people with bleeding disorders or low blood pressure, those undergoing surgery, and individuals taking certain medications like anticoagulants, immunosuppressants, or blood pressure or diabetes medications should consult with a healthcare professional before using reishi."


 

So, here-in lies the problem. The natural choices have not gone through the same testing and control as the drugs, so therefore, the doctors' hands are tied for fear of getting sued. So the doctors therefore are more limited on what they can do than we are. We can not sue ourselves.

Anyone have thoughts/experience with  green tea extracts, reishi and cordicep mushroom supplements?  

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.

Ok, maybe better than a "treatment".  A do-it-yourself add-on that can possibly give immediate platelets, at sometimes an extreme level of increase. Takes no patience, if the dose is right. Papaya leaf extract. Can definitely cause a roller coaster ride, though, and a laxative effect. Combined with dexamethasone, though, could be even better. Maybe not take the pills together though. I got extreme bruising this last time on the second day of combining them. I really think the dexamethasone pulse is really the way to go, but original poster is in a ween situation with that, so that's a big compromise. I mean, its great if daily dexamethasone makes sense, but does it? Is this common?

 

I realize it is papaya leaf extract (I will try to correct my post) - too lazy I guess to type it out.  No I really don't believe it a treatment - so many things can raise a count for a bit, heck baby aspirin increased my count to a very nice level but I don't call that a treatment, not to mention it dropped it back down.  However it did raise your count for a short time.  

I have no idea where this "doctor" you read on the internet came from, what type of doctor he is or if he is legit or the site you found him on is legit.    I suggested you don't try so hard to increase platelets and don't worry so much as it seemed you were driving yourself crazy to try to get in the normal range, not to be happy with low counts.   What it is about now is not necessarily to get counts into the normal range but to get a decent count that causes no problems.   As I've mentioned, I know 2 people who keep a count of around 5k, not trying to get counts in the normal range because for them it won't happen.   

My hematologist is not like doctors you mention - in fact he knows more about ITP than any hematologist I've had (and due to them retiring, moving out of my insc, or dying I've had a lot of them) and he LOVES blood, I've not had to treat under him but we have talked about what my options would be if I ever got to 20-30k.  

MelA, papaya leaf extract, not papaya, but I guess you know that. Not a treatment? You said yourself that it raises my platelets too high. That is the disconnect that exists in this question of papaya leaf extract. You suggested I be happy with low counts, when I could have high counts. I do realize there are dangers either way. This is no picnic. 

I saw a "doctor" on the internet say that papaya leaf extract does not raise platelets. He is wrong. Should I listen to him? I know he is wrong. 

Yes I prefer to get my weather forecast from a weather professional, if said weather professional is using all the options available to him. That does not seem to be the case with doctors. It really doesn't seem to be the case. 

We both agree, Its just a guess, so I'm going to guess along with the doctors. Its important stuff, but its just a game, I guess. Its not methodical enough for anyone to have a crystal ball. Its craziness. But its real... This is mostly about one number, platelet count. This is the game. Sometimes we're winning, sometimes we're losing. Fatigue and side effects, not withstanding. The only absolute that I have is that low platelet counts cause "bruising" appearance, and CBC platelet numbers do not lie.



 

As Cindy said, we cannot tell you what to do - we can just tell you what we know.
This however should be discussed between you and your doctor - that is where the knowledge is.

How long have you had ITP - were the failed treatments given enough time to work.  (I don't consider papaya leaf extract a treatment).   Were you tested for h.pylori and found to have it?

I can tell you I would not (not saying never) give up my spleen if couldn't be assured that it was a cure.   I have a friend who has ITP probably as long as I have (1989) or longer, had his spleen until last year when it became very enlarged and he had to have a splenectomy - his count now is going over the top range for platelets.   I have another ITP friend who had Rituxan, it brought her count up and it is still doing good, also it helped her RA - this was in the days when Rituxan was given 6 or 8 infusions, can't recall which.   A woman in our ITP group that met monthly had test done & it showed her platelets being destroyed in the spleen so out it went - her count was good for a couple months before it hit bottom again and she was at 5,000 and holding, she's ok with that count.  Unfortunately our group disbanded a few years ago.

You just don't know - the only thing positive about ITP is there is nothing positive about ITP.

You need to talk with your doctor and decide what to do. 
 
Good luck to you and keep us posted please!

I personally wonder what would happen if you weened off of dexamethasone, started somewhat high dose papaya leaf extract, and then pulsed dexamethasone (40 mg for 4 days in a row) as needed. This "requires" no ween when its a pulse. You do feel lousy and maybe potentially unhinged for 3 days though, so that could be bad.

Of course I also personally wonder if your doctor has an agenda about/against papaya leaf extract. I do admit that even my use of papaya leaf extract is not the steady result that anyone really desires, so far. But, that is avoiding dexamethasone. I think if I caved to dexamethasone more often, I would be steadier. I'm on last day of pulse right now, since my lack of it caught up to me after months without. Hopefully the condition doesn't get harder and harder to treat. 

As far as something else, I guess it could be Retuximab, low dose 100 mg. or bio-equivalent, or high dose.

pmc.ncbi.nlm.nih.gov/articles/PMC8514896/   

A good study that delves into the dexamethasone, too. I need to read it more closely, myself.

Guess what? Everything's a guess. I'm  my own doctor that doesn't have an agenda against papaya leaf extract, although I may have an agenda for papaya leaf extract. Everybody likes to keep their favorite for as long as they can. Your doctor may show disdain for the papaya leaf extract. You tend to be on your own to some extent, and that scares some people from using it, I bet.

Is your doctor guessing? I think so. ITP, the guessing game. You will feel good while pulsing dexamethasone, but the rest of the time, so-so. This is a science project, similar to the athletic stuff that we have both done before, and we're not through with (the athletic part, I mean, we're not through with). Of course, we're not through with the ITP, either, are we? No, we're not. Sorry its hitting you at your late athletic peak.

Yeah, Rituximab does have that tempting possibility of remission, that''s for sure. And there is a low dose that works almost as well.

It is strange how papaya leaf extract raises platelets and then drops them. I suppose a 40 increase and a 70 drop could be confused as a net bad thing, but...

Well, actually the papaya leaf extract followed ivig, which is also known for rises and falls.

So you could say that the papaya leaf extract did its thing, but the numbers were bound to find the pre-ivig level, which is exactly what happened.

Not that cost effectiveness is monitored here, the order of cheapest first I believe would be papaya leaf extract, splenectomy, rituximab, tpo agonist. Papaya leaf extract use is like a deer browsing on the fauna.

Remember, none of us are qualified to give you a "second opinion", but can offer advice.
And also remember, what works for one may not work for others.
I was diagnosed in 2004 and had a splenectomy in 2006 which didn't work.  In 2011, I did Rituxan which put me in remission.  
Really, these are questions you should be asking and discussing with your doctor.
Good luck and please keep us posted.

Can't blame you for feeling lost at this low point in your chart. But, you did have reaction from papaya leaf extract. Then it crashed and you quit. It gives me that roller coaster ride, too. But, at least it goes up. Mine goes up much more, but still your count went up 40, and that is the most reaction increase that you have had.

Hey everyone!

I am stuck and struggling mentally, unsure of how to proceed. Feeling lost, looking for advice…

M41 ITP, – failed steroids, IVIG, TPO agonists, cytostatics, papaya, H. pylori eradication. Platelets are at 20 right now after 2 months of various treatments.

What next? Splenectomy vs. Rituximab? Any other options?
I’d really appreciate second opinions on further management and any alternative options I might have missed. My hematologist is supportive, but my case is getting tough.
Brief timeline and treatments to date:

• March 2025: Platelets normal (240 × 10⁹/L). Physically active, no symptoms.
• April–May: Started antidepressants (venlafaxine, amitriptyline), high-dose omega-3s, brief use of nimesulide.
• Early June: Noticed scattered petechiae, especially after massage.
• June 9: Severe thrombocytopenia (7 × 10⁹/L), diagnosed with ITP.
• June 11: Started high-dose methylprednisolone (72 mg/day). Mild improvement (up to 28–51 × 10⁹/L).
• June 19: Added eltrombopag (Revolade), then increased to 75 mg/day. No significant response.
• June 23–27: Four-day course of IVIG (Bioven Mono, total 350 ml).
• Late June–July: Papaya leaf extract (no effect), then switched to dexamethasone (8–12 mg/day).
• July: Added cyclophosphamide (endoxan) 50 mg qod. Minimal response, platelets stayed <40.
• June–July: Full workup for secondary causes (viral, bacterial, H. pylori, autoimmune, immunoglobulins, complements, iron, B12, folate, vitamin D, toxoplasma, CMV, EBV) – all essentially normal or old infections only.
• July: H. pylori eradication therapy (triple therapy) – completed 9 days ago.
• August: Two courses of IVIG (100–150 ml × 3), again with no response.
• Throughout: Supportive therapy (hepatoprotectors, potassium/magnesium, PPI).

Current status (August 2025):

• Platelets remain 14–24 × 10⁹/L (auto/Fonio), despite maximal therapies.
• No active bleeding, but persistent mild petechiae and severe thrombocytopenia for 2 months.
• CBC otherwise stable. Mild steroid-induced leukocytosis. No anemia.
• Biochemistry: ALT and LDH moderately elevated, bilirubin variable (direct normal, indirect sometimes up), but overall stable.
• **Bone marrow not formally biopsied yet (morphology on peripheral smear: large platelets, rare blasts, no cytopenias).
• Immunoglobulins, complements, ANA, antiphospholipid Abs: normal/negative.
• No splenomegaly on ultrasound.
• No active infection. Vaccinations up to date (would repeat pre-splenectomy if needed).

Now my main question: What should be my next step?

1. Rituximab (I’m infection-screened and ready; hesitant about long-term immunosuppression but open).
2. Splenectomy (I’m otherwise healthy and not opposed if necessary, but would prefer a less invasive option if possible).
3. Any evidence-based alternatives, novel therapies, or trial-eligible options?

Any suggestions for how to maximize the odds of remission, minimize risks, or optimize my management plan would be greatly appreciated.

Thank you all so much for any advice!

Thank you - knees ok now, but peripheral neuropathy for over 20 years is now affecting my legs.  Oh well, I'm waking up in the morning so I'm happy

I like to see my hematologist at least 1x a year, that keeps me in touch with him and then if I have a problem I can get in to see him.  Also I email him questions - like is it ok to take baby aspirin after knee surgery to prevent a blood clot, the answer was yes but needed counts done to make sure ok, actually my count increased.

You do what you feel is right for you that is the only thing we can do!

I don't bleed terribly, but I do have symptoms when its down to 5.

Sorry to hear about your bad prednisone side effects. 

I don't see much reason to see my hematologist. Its just a numbers game. Oh, I think he wants me on tpo agonist, but until I'm ready for that, there isn't much reason to talk, except by email.

I would rather not have a high count - not even the normal high count of 450k.  My lowest count was 11k and dropping so I don't know how low it went or would have gone - I found that scary, definitely.  Not sure I'd like the constant 5k the ones in our ITP group had, but neither had symptoms so I don't know.  

No, you do not want to constantly be on prednisone - I was on it too long, mainly my fault because we lived in Hong Kong and my Brit trained hematologist would panic every time my count went  down from the last count - I did not want a splenectomy there.  So I stayed on a low dose after my count stayed ok on the higher dose, was on it close to 4 years.  I believe I am paying for it now - both knees replaced due to arthritis and now my right shoulder has it and is it every painful!!  Pred as an emergency would be ok but I still said no way am I taking it when my count tanked from a tetanus booster before our son's wedding - my hematologist got approval from my insurance to give me WinRho and my count went up to a decent count.  

I get a CBC every now and then - usually before seeing my fantastic hematologist.  However if I feel my count is off then I just call and ask for an order for a CBC be sent to the lab.  I'm not trying to get to the normal range, I just would like to be over 60k.

You do what you have to do and be true to yourself.    When do you see your hematologist again?

I traveled through Europe on a cruise last year while my platelets were fluctuating between 50 and 80. I made sure to carry a detailed medical letter from my hematologist, travel insurance that covered pre-existing conditions, and identified hospitals near each port - thankfully, I didn’t need them, but it gave me peace of mind.