Splenectomy vs. Rituximab in Tough ITP Case—Seeking Second Opinions

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?

 

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.