Well I am getting Decadron IV, Ruxience IV and N-Plate shots weekly and my platelets are still only in the 20's Because IR (Interventional Radiology) didn't want to look at my Hemodialysis Graft my Nephrologist ordered a Ultrasound of the Graft. The US showed high pressures on both ends of the graft indicating stenosis. It needs to be addressed to prevent graft failure!! My Neph is going to talk to IR. I will find out what the plan is this week. Nervous. Will talk to my Hematologist about switching from Ruxience to IVIG.

Back to 165, so a worse drop than to 200. Have to try another pulse of papaya leaf extract, and hopefully get a blood test in a week.

I moved to Tokyo along with my husband & sons shortly after being diagnosed with ITP and on 60mg of prednisone.  Once in Tokyo I had a fantastic hematologist who knew my state-side hematologist (small world).  Later we moved to Hong Kong and that hematologist didn't know much about ITP and would panic if my count dropped and would want my spleen removed - no way!  We traveled to Thailand, Mainland China, Macau, Italy, the UK, Singapore and more.    I've also been on various cruises since diagnosis, including a river cruise in the US and Europe, trips to Ireland - and to be honest I didn't know what my count was before o any trip, just the moves.   Know I am not answering your question but just thought I'd let you know that ITP isn't the end of everything - you can still live. 

Is this a river cruise?   Do you have a hematologist, if not you should have one, if you do then talk to him/her about your trip.  The 2 of you can come up with a solution for your trip.    I would think a cruise ship would have medical onboard and probably could do a blood test. 

Your count is within range why do you want to increase it.

Also why do you want to please your doctor?

MelA wrote: Your count is within range why do you want to increase it.

You have to look at where its trending, not where it is. So, its gone from 505 to 165 in 2 weeks. My efforts at turning it back up were unsuccessful. I KNOW that this means that the numbers will keep descending to about 5, which will take less than 2 weeks, if I am unsuccessful at turning the "switch" to huge platelet-increasing mode. My numbers are a big saw-tooth chart where numbers are either going up hugely or going down hugely. I never actually have been successful at turning them in the middle, but I thought that was because I hadn't tried hard enough. Unless some survival mode determines when the "switch" gets thrown, when they are low. Anyway, to keep them from the 5 area, I have to realize that I'm in the danger zone and heading for inevitable basement, if I can't turn it early. This medication does not work, for me, in any way similar to other people's results with other medications. It works, but in an out-of-control way, especially lately, so I don't know if it will be my last medication, by itself, but welcome to ITP, right? Maybe I'm just missing some other natural that can fight the destruction aspect...

MelA wrote: Also why do you want to please your doctor?

Well, that is an interesting question. I guess you tell me. I thought he could always say, if I don't try to please him I should find someone else. I mean he does give me the blood tests that I need, so I don't want to change. Am I worried too much about pleasing him? I mean he is being reasonable. He tells me that I should take dexamethasone, but he accepts that I want to try more papaya leaf extract before I settle for the dexamethasone, which would be an add-on to the papaya leaf extract. He just stays far away from the administering of the papaya leaf extract.

Doctor agreed with the trend pointing to a necessary sooner blood test. Will have one in a week or less. 

The highest my count has been, that I know of, was 401k and that was too high for my liking.  That 505k would have scared me - too high is stroke or heart attack risk.

Sorry it just sounded like you wanted to make your # high before you went to see your hematologist.

How long have you had ITP?     Would it help do you think if you relaxed and quit trying so hard?   We used to have a monthly gathering of ITPers at one of our houses - there was a man who had a count of 5k and never went higher - he didn't let that stop him for living, he & his wife even adopted a child.   A lady went to London to have that test ( can't recall the name of it, can't get it here ) done to see where her platelets were being destroyed - test showed it was in the spleen.  She came back here and had a splenectomy, count went up for a couple months then back the the normal (for her) 5k, so the splenectomy did not work, she was a happy person and didn't let the low count stop her from living.   Everyone in our group had low counts, not as low as those 2 though, most of us said pffffffft to ITP  

   

Well, that's another way of looking at it, I guess. But, 5 count is scary. I have had it about a year at least, 11 months that I have actually known, though. 

I've seen 4 count. So, I don't really see how its an option not to treat it. How do you take blood counts, if you're not going to treat? 

I think I could settle it down with prednisone added to the papaya leaf extract, but I don't really want to get into chronic use of prednisone. And that is what it would become.

I appreciate your feedback, and looking at it from another point of view, that is easy to think is not even an option, sometimes.

So you personally fear high counts more than low counts? I mean over 200 count is supposed to be scary (bad) with TPO agonist drugs, but I'm not sure that max applies to papaya leaf extract. Who knows...

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.

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 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.

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!

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!

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.

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.

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.

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.

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!

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.



 

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.  

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?

 

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.

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

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.

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."


 

Yeah, mushrooms seem to be the anti-platelet. 

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

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...

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 !