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 !

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. 

 

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.

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...

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.

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. 

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

Papaya leaf is very very NON-toxic. You can give it daily, as much as you need. Since your son has a genetic variation predisposing him to ITP, he can take it for life, if he needs to, and as long as it is helping him.

Thank you ever so much for your support, appreciate it!

My best wishes to you and your son. And you genuinely don't have to be afraid of papaya leaf--not because it is "natural", simply because it is an extremely benign plant (unless you have a latex allergy!)

For the past three years, we have been managing with Prednisolone steroids each time he had ITP and his platelet count increases after five days of steroids and we would stop the meds as per Haematologist. As you know steroids are not very nice so trying to see how we could use Papaya Leaf Extract instead of steroids.

Back to papaya leaf extract, pill twice a day during end of dip, after 3 months of not taking. Just had a pretty big platelet drop (420 to 48 in 11 days), and the cycle of CTP has been proven twice without medication, so won't hurt to try to keep count out of the basement.

Not sure how accurate, but I have given myself projected peaks and projected nadirs (since blood tests have not always been at the right time), and going by these numbers; when I have used papaya leaf extract my peaks have been 10% higher, and my dips (nadirs) have been 100% higher (from 4 to 8, so by my numbers, it does look like papaya leaf extract could be helping with my basement numbers. Of course projections of peaks and valleys, when the blood test is sometimes 10 days from the actual, is going to be suspect.

Update: my son’s platelet counts have gone up to normal, but his unconjugated bilirubin counts 4 times more than normal, his eyes and skin are yellowish, his gastroenterologist doesn’t know what’s causing it other than saying could be because of haemolytic. Any thoughts guys?

Yes my son’s haematologist was unhappy when we asked for suggestions on using papaya leaf extract

• Rare Adverse Effects: In one reported case, a 43-year-old man experienced elevated liver enzymes (not necessarily specifically bilirubin) while taking papaya leaf extract, which suggested a possible, though rare, instance of herb-induced liver injury.

        Papaya leaf extract normally helps the liver and goes the other way, but I did find the above. Anything is possible.                Guess maybe lay off the papaya leaf extract for a bit...

        Your son has low red blood cells and low hemoglobin?

        You're used to the cortico-steroids. Another med is rituximab for when immune system attacks red            blood cells,          apparently.

        No sign of gall stones, right?

        

        

Hey all, I hope this finds you well. I had no idea that it's been almost five years since I last checked in, so I thought I'd share an update and ask everyone how they're doing?

My platelets have been stable over 150K the entire time since 2013. I do a regular CBC once a year with my physical, sometime more often if I'm trying to have something evaluated, but otherwise I don't think about ITP anymore, which is something I couldn't have imagined saying in 2012. I am eternally grateful that I was able to solve my issue and I'm equally grateful for all of the help from people who shared on this forum.

If anyone I've interacted with in the past would like to share their update I'd welcome it and I wish you well.

Also, as I haven't followed ITP advances closely, I would like to ask if there has been an increase in the consideration of mold as a proximate cause or if there remains no curiosity on that subject.

Many thanks, Keith 

No, there doesn't seem to be a big curiosity on the effects of mold. It doesn't seem to be widely thought that there is any environmental concern that, when taken away, would end ITP. 

I actually, for myself, have determined, on my own, that I have Cyclic Thrombocytopenia. Interestingly, a person taking annual blood tests might miss having this. Only half the time will a person see lower than normal platelet counts. 

When I had 9 straight cycles, I mistakenly thought that the papaya leaf extract that I was taking was raising my platelets each time, even though I knew I seemed to be powerless to the decline, until the body was ready to fix it. Until I saw the potential for a 39 day cycle, I was surprised each time that it happened. I am on doctor number 3, and due to my research on a rare disease/disorder, I have been superior to all 3 in a heads up on what to do with this. 

If they don't seem to know about CTP, then they don't really understand ITP, in my opinion. They are not ready for the challenges of even ITP due to not spending much time with the disorder. Supposedly less than 100 patients have truly been diagnosed with CTP, mostly women. I'm male, by the way. Of course, given the resistance to a diagnosis of CTP, I can see why the number could be a lot lower than it should be. But, I'm sure it is truly rare, or at least pretty sure...

Anyway, just showing you another side of being your own doctor/advocate. My journey has actually avoided the expensive treatments thus far, except for the initial hospital stay when I was blind-sided. Sure, it would be nice to have the topping off of platelet infusions... That's one way to do it, and I agree that that may help with the brain fog. Of course in your situation, the mold (may have) caused (some of) the brain fog, too, right?

Hi, and thanks for sharing. Yes, for sure, I had massive brain fog and it was in many ways the worst part of ITP for me.

That said, and I don't know any more about your situation than you shared, but your ITP being cyclic just screams 'environmental issue to me'.

Have you thought about graphing when you're up and when you're down and comparing it the time of year? That's basically what I did. I'm not suggesting you situation is mold or HVAC related necessarily, but it could be a seasonal allergy that triggers you, or maybe a food that is only available in part of the year, or any stimulus that isn't consistent across the year.

Hi, thanks. No, cyclic thrombocytopenia is not seasonally cyclic, although the highs and lows could be influenced by the seasons possibly. My cycle is 39 days long. It is not affected by the environment at all, as far as cycle length. You can set your calendar to it. Basically 17 days to go from dip to peak and 22 days from peak to dip. 39 days. The body knows the platelets are going down and turns on the thrombopoietin (TPO). So the overwhelming TPO sends the platelets way up until the immune system does its thing, perhaps for survival, since enough is enough,  and brings the platelets down again to extremely low. Endless cycle unless it somehow stops. Last cycle dip I spent about 8 days between 1 and 10. I expect I will try cyclosporine A, but my doctor insists on a conversation first, and we haven't had it yet, unfortunately. 

You are correct, my bad. My father got COPD and asthma from smoking! He did quit but he was allergic to wheat and dairy as am I so he had constant coughing. Removing wheat and dairy was an undeniable change that was so nice. I'm also doing it as I am allergic to both sadly. Why is it the best tasting food is forbidden or I will pay the price in symptoms. Anyway I'm still doing the vitamin c daily uptake of 1 cup of strawberries. It gives me RDA for "c" and I also get some from all the veggies I eat. Still hovering in 50's but check in with hema isn't until 2027 unless something comes up so it's a nice break from the six month check ins. All the good health to you in this new year.

I knew I mentioned CTP somewhere. And how its not something you necessarily want. Well, I have it afterall. I thought my fluctuations were papaya leaf extract-induced, and so did my doctor at the time, but no. After my own attention, and proving it a couple of cycles with no medication, there it was, hiding. Its very predictable and way too low in the dips, Cyclic Thrombocytopenia.

I’m a 70-yr old woman that was diagnosed with ITP 2 years ago. Had four Ritumax infusions in February 2024. Platelets now fluctuate between 60 to 90 now. Is it safe to take Black Elderberry 3000 mg capsules - 1per day?

Seems like you're doing well, but not out of the woods, so if elderberry is anti-platelet, then no.

My platelet count from Jul 24 to Feb 26 are as follows;
15 Jul 24 - 184
16 Sep 24 - 153
16 Dec 24 - 157
7 Apr 25 - 183
14 Jul 25 - 167
3 Nov 25 - 167
12 Feb 26 - 177

The combination of medical treatment starting from 23 Feb 2026

a. Cyclosporine A - 75 mg daily (am: 50 mg, pm: 25 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

 I have cyclic thrombocytopenia, and am interested, especially in the cyclosporine A, and maybe some of the other drugs you are on. I believe I will soon start with the Cyclosporine A. You did mention a year ago that you thought azathioprine may have been key to stabilize platelets. So maybe I should look into that more, too.

It is a bunch of medications different than most are used to seeing. You never saw any indication that you had a cyclic nature to your disorder, right? You might even say that these medications are for cyclic thrombocytopenia.

Like I say, interested especially for my case in the cyclosporine A. Is there something about it not working for a month and a half when starting on it, and maybe it stopping working after a month and a half of not using it? I don't understand if there is this delay, since I believe transplant patients don't start using it until surgery... 

I would love to use it just for the platelet drop phase of my cyclic thrombocytopenia, right after the peak, but it probably is not that reactive, hence the delay factor.

So drbean, you said this a year and 10 months ago: 

"We have tried several times to reduce the cyclosporine A to 25-75 mg daily, but the platelet collapsed after a week.

That's why we stopped at the current level and didn't move forward."

So, the cyclosporine did react quickly when dropping the dosage shortly. Interesting, for sure, thank you. So that was dropping it below 100 mg a day. I think I might start out at 150 mg times 2 (am and pm). I weigh 70kg, by the way. Azathioprine would be the other question. 

Or maybe I could do like you and take 100 mg cyclosporine twice a day and 50 mg Azathioprine. I will discuss with doctor in March. Not sure how he feels about starting 2 drugs at the same time. Probably not so much. I do read though that a side effect of azathioprine is bruising and bleeding, so I'll probably skip that at first.