I said earlier that papaya leaf extract may have let me down, unless my count might have gotten really low. Well, I expect that is what happened, because second "pulse" of papaya leaf extract brought my number from 41 to 465 in one week. It just works, for me. I'm guessing its not the production of platelets that is a problem for me, but who knows. This will keep people out of the hospital, or generally keep people from the other drugs,  if said people are like me. The leaves are still a bit a of a challenge digestively speaking, so not without their problems.

Sorry for wrong conclusion, edit:

I actually have cyclic thrombocytopenia, so my huge increases are just part of the cycle and not papaya leaf extract, unfortunately. Took 9 cycles to understand, and my doctor still didn't get it, even after I pointed it out.

If your hematologist can't see you he could at least order a CBC to check your counts!!!
I find it interesting that you are a nursing student but he treats you differently.
You like him, he's friendly but it doesn't sound like he is taking your concern & anxiety
seriously - that wouldn't sit well with me!  If you are not happy with how he is treating
you (feeling overlooked) then you might want another hematologist, but if you are fine with him then stick with him.

Yes anxiety & stress has been known to bring down platelets of some patients!    I am
so very sorry about the loss of your precious dog!!   

Good luck and do keep us posted on how you are doing.  

The chewable papaya complex is pretty easy to google it seems. It has papaya but not papaya leaf. It has bromelain which is supposed to be more anti-platelet so, that is not so great. But, the results for the original poster sound good. Maybe papaya leaf extract would be a better choice. It would be great to get results without the leaves, though. Anybody else get results from papaya without the leaves?

"I like my hematologist, he is local and very friendly. However, my actual appointments with him only lasted around 10 minutes. I bring up concerns about my anxiety impacting these drops, but nothing comes of it. I am wondering if others have had similar experiences and I should consider a second opinion, or if this may just be the ride that I am in for."

As far as your last paragraph goes, it's good that your doctor is friendly. He is really just going by your numbers. He probably just figures your anxiety is not something that he can do anything about, and he might just think that you are just pointing out your situation, but not actually looking for an answer to it. If he did give an answer, it might be "talk to your primary about it". 

Yes, people do list stress as a wildcard for platelet drop.

This could be informative:  pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/31306-nplate-information

Promacta I see is like Nplate, both helping production of platelets. You could ask for the TPO test.

So, if you had steroids handy, you could avoid the hospital, right? I guess you need steroids handy, for one thing.

Hi there! 

I am new here and also somewhat new to ITP. I was first diagnosed back in August, so going on 7 months now. I was 21 when I was first diagnosed, and am now 22 in my last semester of college.

When I was first diagnosed in early August 2024, I received an invasive dental procedure that gave me asymptomatic strep, which is the believed instigator for all of this at the moment. I noticed petechiae/bruising and after a few days of no improvement, went to the ER. I was at 15,000. I was given a consult with an outpatient hematology Dr. and was started on prednisone and antibiotics. By late August, I was admitted for 4 days following my levels dropping down to 0. I had no infection this time around, but had just lost my dog and was very emotionally vulnerable (always my assumption for the drop).

Following this, I was started on Promacta (Eltrombopag) 25 mg while still weaning off my prednisone. Ultimately it took me 5 months to get off my Prednisone due to headaches and side effects.

I seem to respond very well to steroids in these events and bounce back up to the consistent 300,000s. But when my levels drop they drop fast and sudden. In January 2025 there were more petechiae and bruising with a level of 66,000. In February 2025 I was admitted for a night at 19,000. And as I currently am writing this in March 2025 I have petechiae and am getting ready to pack up and head to the ER since my hematologist cannot see me.

I am currently on Promacta 50mg tablets once per day. 

My current issue is that I am feeling frustrated and overlooked as a patient. I am a nursing student in my very last semester, so I understand how this process works to an extent and I do not expect a permanent 'solution' or something that will work perfectly. I am just wondering if I should seek a second opinion?

I like my hematologist, he is local and very friendly. However, my actual appointments with him only lasted around 10 minutes. I bring up concerns about my anxiety impacting these drops, but nothing comes of it. I am wondering if others have had similar experiences and I should consider a second opinion, or if this may just be the ride that I am in for.

Nice to find a helpful community!

How do you guys cover the costs of drugs like promacta? Nplate? I've been reading up on deductible accumulators (universal co-pay program payments don't count towards your deductible or out-of-pocket-max) and I'm scared I won't be able to afford treatment when I get an insurance plan (I'm on medicaid now). Do insurance plans on the ACA marketplace have deductible accumulator policies?

How much do you spend per year on prescriptions for this condition. 

My daughter was diagnosed in Aug of last year that she has ITP. We were told she has had it since 2020. We have noticed that when her platelets drop a migraine is one of her symptoms. Is this something that happens with others? 

We did talk and he does think it's intriguing. If anyone else is using Samsung Health i'd be happy to share my analysis notes with them once i get the data parsed. (I am trying to determine if there were previous signals correlated or uncorrelated with platelet drops before the watch started reporting to me HRV overnight.)

Hi Judi,
Your idea is plausible but unproven, so consider tracking it with your Samsung watch alongside platelet counts and discussing it with Dr. Kasthuri as a potential early warning tool.

Hi Susie,
You could ask your hematologist if delaying treatment and monitoring your platelet counts is safe instead of starting Dexamethasone.

Hi Coasterdon,
You should consider asking your doctor for a complete blood count soon to monitor your platelet levels, given the past fluctuations and enlarged spleen, rather than waiting until July for the hematologist.

Its difficult, but if you are feeling unusually tired, that is a clue. I just now, with my latest CBC, thought my platelets would be high, but admittedly was feeling like they are low. Well,...they ARE low... Seems like the papaya leaf extract let me down a bit this time, unless my platelet number got lower than I realized, before I had the latest round of pills... And therefore is taking more to bump it back up... Disease of questions...

One thing that I do is speed typing as a hobby. My typing has not been going too well, for me, so that is a clue also. So, if you want to know how you're doing, your wpm might help you to get an idea. Just not the same fluidity. So if you happen to have a hobby that deals with numbers and quickness, that could help. I suppose any video game. Speed typing is like a practical video game.

Hi MommaBear
Sorry to hear your story.
In my opinion, switching to Nplate or Avatrombopag is a great idea if you don't have a medical contradiction. I assume you have good insurance that covers your IVIGs so getting this covered should be possible.

Regarding your concern about ditching prednisone, from what I remember +80% of patients on these meds do so. The few still needing to take pred will usually take less than 5mg as both medications have a great synergy.

P.S: I am just changing care team ...

Yes, my hematologist is also curious whether heart rate variability might be a signal of platelet dropping (not a cause). I hope to find something that might be a useful signal of platelets dropping under 30k before petechiae show up.

Margaret, I agree 89k is a good count!  And that is with a 1/2 dose of your mycophenolate.   Good to hear it has been used 20-30 years without problems!   Let us know when you have another CBC!

Strange reaction your Mom had with #2 Shingrex!   I have that, without the rash, since having Shingles May 2024 - no rash but the post-pain.  Seriously, Shingles is the pits!!

Talk care!
Melinda

So it’s been a few months and my Wife’s numbers have increased above 200 and held, so we dropped down to Doptelet 40mg 3x per week and 20mg 4x per week.

She dropped down to lower 100s, but then started rising again to where her last reading was approximately 190. 

It has now been three weeks since that last reading. After that appointment, we decided to start taking Black Raspberey powder to try and attack inflammation from yet another angle.

Hoping to come down on the Doptelet again, but just very grateful to actually have a life again…huge difference from that whole first year.

That's great to learn, that there is a test to determine  thrombopoietin levels, AND, that if your levels are up you don't need or want a drug that is a  thrombopoietin receptor agonist! My hematologist started that talk, of second line choices,  before I figured out the papaya leaf extract, and he never mentioned a thombopoietin test.

Also great to have the 3 types of ITP explained. Thank you.

Hello All,

I was reading through past posts and just wanted to put this out there. I have personally seen Dr. Kuter in Boston a few times. He was part of the team that developed Nplate and has over 5,000 ITP patients. He told me that there are 3 types of ITP patients:

Those who have a platelet destruction only problem. (The platelets are only being destroyed due to some immune factor, most likely autoantibodies.)

Those who have a platelet production only problem. (Their body does not produce enough platelets.)

Those who have a combination of a platelet destruction and production problem. (Their body destroys their platelets and at the same time can't make the platelets fast enough to keep up with the destruction, which is why they seem to always have a low platelet count despite treatment.)

Your body makes a hormone called thrombopoietin (TPO). It is made by your liver and kidneys and stimulates your body to make platelets. Dr. Kuter told me that if you do not have a platelet production problem, NPlate will not help you as the whole purpose of the drug is to stimulate platelet production by mimicking the effects of the hormone thrombopoietin (TPO). 

Before you start Nplate, your hematologist should test your thrombopoietin level. If it is within normal range, this means that your body is producing platelets at a normal rate. Dr. Kuter told me that in this case, NPlate most likely will not help you. In my experience, most hematologists don't necessarily have this knowledge and you may have to ask for this test to be run. 

Perhaps this will help someone from unnecessarily taking Nplate if their ITP is destruction only based. It can come with some nasty side effects.
 

Hi,

Please see my new post on NPlate. I wanted to put it out there for all to see.

Thanks.
 

So research shows it has been used 20-30 years, mainly for transplant patients. My recent blood test showed 89, which is down a bit after halving the mycophenolate dose, but a good count. Today's haemo (I see two, depending on schedules) says long-term use is fine. Some transplant patients have used it for 20 years without problems.
Hope your shingrix goes ok. My mother had her second recently and had a strange reaction - the distinctive burning pain of shingles, but a completely different rash, just on foot and hand. Cleared up after 3-4 days. I didn't have such a dramatic side effect, just a bit achy and fatigued. Better than full-on shingles!

We do tend to blame everything on causing a low platelet count. If your count is good now maybe the wait and see is ok. I did that and then had a tetanus booster that dropped my count to the gutter and had to treat. Have you talked to your doctor about your heart rate?

Yes, if you are concerned get your doctor to have a platelet count done!!!!!   Don't stew over what might be, have it checked out!!!   Why is it taking you so long to see a hematologist?

 I'm sorry you are having this problem, keep us posted and can you see if your doctor can get you in to a hematologist sooner?

Good luck!!

My shortness of breath was before the dex. Thanks for sharing!

I know someone who calls it the shot from hell. She hurts for a number of days after it, plus a headache. But it is the only thing that keeps her count decent, and hers will drop real fast so she gets the shot every week unless the count is good.

I had shortness of breath after dexamethasone.

I don't know about the heart rate variability but I have gotten linear results from Papaya leaf extract, 500 mg pills.

Its been 6 months, and I''m still working on it, though.

First, after 2 months, I added papaya leaf extract to dexamethasone treatment. In fact, the dex was first and I had no platelet response, Then I tried 1 pill a day of papaya leaf extract, and the platelets shot right up.

Then the platelets  went down, without papaya leaf extract. My hematologist wanted to try  second line drugs, and I let him know I wanted to try just papaya leaf extract. Or, actually, he ordered more dex, to do first. He didn't know what I did earlier. He was only giving me a few days, so I took 16 pills papaya leaf extract, by itself, in 3 days. The platelets went way way up, even past normal.

Then I tried one pill every other day, and that wasn't enough.

Then I tried one pill a day, and that wasn't enough.

Next was  4 pills a day, every 4 days, and that worked a little too well.

Then I tried 4 pills once a week, and that didn't work.

Now, I'm going to try 4 pills every 5 days. So still working on it, after 6 months.

Sorry if this doesn't exactly answer your question, but we've been going at this about the same length of time, and it seems like you're looking for a way of staying out of the hospital. I stay out of the hospital, and away from the steroids with papaya leaf extract. When I first had the bad blood count, it was off to the hospital, but no more, as long as the papaya leaf extract continues to work linearly, and predictably. 

As far as when to go for CBC, for me I go every 2 weeks, mostly, until I get things figured out more strategically. It takes a while, for sure.

Hi, and welcome Don!
Do you have any symptoms, like bruising or petechia?  If you are at all worried, by all means get your doctor to send you for blood work.
I had my spleen out in my 40's, not because it was enlarged, I just wanted off the prednisone.  It didn't work.
Try not to worry until you see your hema dr.  Then between the two of you, you can discuss options.
Let us know if you do go for bloods and what your count is.

Charlotte

I've had 2 spells on  NPlate both times my count was up and down like a yoyo. The second time my hip bones ached so much I gave it up as a bad job when my count dropped to from over 100 to 15.