I did decide to use the resveratrol and curcumin (and quercitin) at the same time as the papaya leaf extract for a couple of days in a row. This may have been what flipped the switch. I did use quite a bit of papaya leaf extract this week. 

12  to 505 platelets in one week. Now I'll be good if I can do a pulse just before my 2 week blood test and shoot the numbers back up (they will be down to middling by then), but that may take some luck. If the switch does flip at 200, how high will the numbers go, or do I somehow have a limit? Will I ever see 600 or more? Not wanting to... If you put preference on avoiding low numbers, you could run more into high numbers.

I just raised my platelets from 12 to 505 in the last week. 

But, I suppose that is why you wouldn't want papaya leaf extract at this time, since you're shooting for 200 or less, for fear of blood clots from eltrombopag.

Not all rosy here, either, though. If I don't play my cards right, I could be back to 5 in less than a month. Its getting hard to flip that switch to the high platelet production. And the doctor is pressuring me not to let it get that low, yet I'll have to ask in a couple weeks maybe if I can have a weekly blood test... 

Never have dared ask for a weekly when I'm in range, even though it has become obvious to me that mid-range is just in the middle of a big drop to the basement. I even realized what was going on last time, took a pulse of papaya leaf extract, 4 pills 4 days in a row, but still got fooled. Turned out apparently, that the pulse didn't do anything because it apparently didn't flip the switch. That's the constant roller coaster that I have been on. Dexamethasone has smoothed it, but I don't want the side effects to add up in me.

Sorry for the confusion but those vertical bars mean that I started taking it, so it just marks a start.

I was taking these meds every day since the start, first Medrol then Dex 9.5mg, 11.5 lately.

And yes, I did hear that combination of dexamethasone and papaya worked the best, going hand in hand.

Latest labs from yesterday came with 16/36, going up!

Well I am taking a Ruxience infusion and an N-Plate shot weekly plus I was Prednisone pills for about 3 weeks for gout and my platelets are running between 20 and 27,000 Dialysis folks think I need a fistulagram because my graft is really beat up and full of Hematomas!! Interventual Radiology won't touch me with my platelets in the 20's.
The joys of ITP

Now, you say that your hematologist is surprised at your lack of reaction to steroids. I see, I believe, you are taking a one-time dose of dexamethasone, first at 9.5mg and another day just lately of 11.5 mg. Which is not much steroid. Am I seeing this correctly? My hematologist believes in the popular 40 mg 4 days in a row pulse of dexamethasone, and doesn't think that 40 would even work for me in a one-day dose, which I suggested could work. 

I find papaya leaf extract goes well with dexamethasone. Especially when I'm getting a little hit and miss with papaya leaf extract on its own. Sometimes though, papaya leaf extract doesn't need dexamethasone. In fact, I rarely use dexamethasone, although it would make things more predictable, it seems.

Wow! Reaching 240 is impressive! What do you think contributed to this?

Did you find a hematologist?  Have you talked to him/her about your travel plans and what you can do while on your cruise?

And I just realized it was your post from earlier that inspired me to use it. So thanks again!

I read a lot about it, but those were your words that made me try it

I think the main issue is that there’s very little evidence supporting the use of papaya in treating autoimmune ITP since most of the existing research focuses on secondary ITP caused by other diseases, especially dengue. So, it's really hard to say whether it actually helped me, especially since I was also receiving IVIG at the same time.

That said, I am considering using it long term. The only thing that concerns me is the possibility yet very little that it could trigger an autoimmune response. Still, there's very little evidence of that, and it wasn’t mentioned in any of the studies I reviewed.

For now, I just want to isolate variables and see what actually works for me. Once I'm in a relatively safe zone—maybe with platelet levels well above 40 I’ll consider trying papaya again. With this condition, it always seems to be a process of trial and error.

And I'm seriously happy it works for you! This thing is strong!

Well, you see, right?, that your highest platelet level dropped immediately when you stopped taking papaya leaf extract. 

Are you afraid of papaya leaf extract for more than 5 days? I know there is that one warning on the internet about safe for short-term use, 5 days, but I personally don't go by that.  

Quick intro. I’m 40, male, and until recently, my platelet count was cruising in the normal range. Then — boom — it dropped to 7. Out of nowhere. Lucky 7! Could had been much worse 

The day before that number came in, I was living full throttle: gym, deep-tissue massage, sauna, and swimming against the current in a river. Not exactly what you'd expect before a total immune system plot twist.

Now I’m a patient. Diagnosed with ITP. First month has been a ride. I’ve been through Medrol (metaprednisone), Dex. Also started Endoxan (chemo). So far, no real breakthrough.

I’m extremely happy with my hematologist — sharp, communicative, and grounded. But even he’s said this kind of resistance to steroids is so rare in his practice. 

At this point, I’m exploring options, digging into what’s next. 

If anyone have ideas to , I'd truly appreciate it.



Medical History up to June 2025:

Blood tests consistently normal, platelet count ranged from 232–273 ×10⁹/L.

09.06.2025 — Sudden onset of multiple petechiae following a massage, platelet count dropped to 7 ×10⁹/L (automated count).

Subsequent progression:
Platelet levels remained low (7–38 ×10⁹/L) despite standard steroid therapy (Medrol up to 72 mg
Possible Causes Considered:

Medication trigger:

• From March to May 2025, the patient took venlafaxine, amitriptyline, high doses of omega-3, nimesulide (20 sachets over 3 months), ibuprofen, and various dietary supplements on a course basis.
• The last dose of nimesulide was 10 days before the appearance of petechiae.
• Medications were prescribed to treat tension-type headaches under the supervision of a neurologist.
  

Prolonged immunosuppression/imbalance:

• Possible reaction to the combination of antidepressants with NSAIDs and supplements, or idiopathic autoimmune disorder.

Excluded causes:

• Infectious, oncohematological, and systemic diseases were ruled out (screening conducted; BCR-ABL negative; viral markers and rheumatologic panel — within normal range).
  

Treatment Administered:

• Medrol 72 mg
• Revolade (Eltrombopag): started at 50 mg on 23.06, increased to 75 mg on 05.07
• IVIG course: 24–27.06, 50–100 mL/day
• Short course of papaya extract: 29.06–04.07
• Endoxan (Cyclophosphamide) added on 05.07
• Switched from Medrol to Dexamethasone starting 06.07
  

Laboratory Dynamics:

• Automated/Fonio counts: fluctuating between 7–60 ×10⁹/L, brief increase to 98 on 01.07, then trending downward again (latest result on 11.07: 9 / 30).
• Platelet anisocytosis observed under immunosuppression.
  

Additional Notes:

• General condition satisfactory: no bleeding, hematomas, or infections.
• All standard viral markers, biochemistry, and systemic disease screening — within normal limits.

Looking for someone with experience with travelling with low platelets.  Newly diagnosed in March 2025, negative reactions to steroids, had 4 infusions of Rituximab in April/May 2025.  Initial response up to 160, but has been sliding down since then (now at 105, if it keeps going down at the same rate will be around 50 by departure) .  I have a cruise booked in Europe for September, and am wondering if anyone has experienced sudden drops and medical care for ITP while travelling.

Thanks, and happy to hear that your response to the rituximab has been good! My readings are still ok, but have been sliding steadily since the treatments - got up to 160, now at 105 - so unsure if this will be my solution. The doctor says it still could kick in and stabilize, but is starting to talk about the next step so I'll have to do my research.

Papaya leaf extract for me, but presently can't believe I can't control the roller coaster. 

Triggers I believe would be May allergies, summer heat and/or too much endurance exercise in heat, maybe physical and mental stress in general, maybe lack of sleep, getting too far away from steroids... Generally not knowing how much papaya  to take and how often, without the help of steroids. 

The mysteries are still over-powering, even though when the switch is thrown, the papaya leaf extract is as impressive as can be. As I've said elsewhere, 50 times as many platelets in 4 days, type of impressive. But can I control it? Especially with not getting blood results quicker than every 2 weeks, when it is high.

 So, more confused than ever, at this point. Trying some other supplements; quercetin, resveratrol, and curcumin. Can't say much about them, though. Can't always keep numbers over 5, if I can't always count on results from the supplement.

Patterns of petechiae I do not have down pat, though number just seems really low before it happens.

Hi guys! I've had chronic ITP since I was 4, and I have noticed some strange triggers like eating raw fish or high altitudes. I was wondering if you guys had any other triggers to keep an eye out for! Also, what homeopathic things have worked for you guys? I take emergency (vitamin C) and oregano oil drops every day, and it seems to help. Also, do you guys get specific patterns of bruises or petechiae that are associated with a certain count, or is it random? I think I've detected some patterns, but I'm not sure if this is at all reasonable to assume.  

I could try adding Resveratrol to papaya leaf extract. Its a bit questionable because it has anti-platelet properties, but it can control auto-antibodies, which is what is possibly making my papaya leaf extract inconsistent, without dexamethasone, lately. It may be very questionable as it could delay clotting. So, probably won't dare use it. Maybe curcumin and resveratrol together. They are both blood thinners, so, can be scary, but could work, due to fighting auto-antibodies... Who knows?

Well, 8 days without papaya leaf extract was too much. More adjustments... In fact, the initial pulse didn't work, so back in the basement because of 2 week cbc increment. Took 2 weeks to find this out.

Oh hey Judielanie. Really nice to hear from you. And sorry to hear of your struggles. 

I finally had some good news last week. Apparently the combination of Nplate and Prednisolon managed to get my platelets up again. Now we hope to be able to slowly reduce the Prednisolon and if it does not work might try stopping my antidepressant Paroxetin. So I am supper happy to (at least temporary) be out of Fatigue and imminent ER risk with even couple of strategies ahead to maneuver difficulties.

Though the cortison seems to interfer a bit with my early detection from body symptoms. Currently only in the positive way, I have bruises but my counts are good. Seems like that can be a side effect of cortison although it is rare for somebody as young as I with no prolonged cortison treatment beforehand.

My pets health is also fluctuating. It is amongst others a progressive illness coupled with me needing to go to the vet quite often (blood draws every two weeks). The last week was quite okay, with the excess energy from the prednisolon I could manage those additional stresses quite well. Though I did realize that my cat is on a higher dose (compared to body weith) on prednisolon than me. Explains why she is so crazy with energy sometimes too.

Am also quite proud of having now learned to give myself the subcutaneous injections from Nplate. A year ago I was quite afraid of needles but now after one year of giving subq's to my cat I can even do so to myself!

Hope my upbeat situation helps you to remember that there can be good turns right around the corner. I just try to see it as a "mini holiday" from my chronical illness where I can regain some energy for the next leg of the "adventure".

Feel free to contact me if you want to talk about your hard pet situation.

judielaine wrote: Actually, the lab i use records "undetectable" for  3 and below. They may know that the 10% difference from one source didn't apply to their lab counter.

Oh, didn't know that undetectable can be 3. Thanks.

Actually, the lab i use records "undetectable" for 3 and below. They may know that the 10% difference from one source didn't apply to their lab counter.

judielaine wrote: Yes, the measurements have a margin of error and, joy, it's different at different ranges.  I've been in the single digits (well, single thousands) and variations in that range (undetectable vs 5, for example) weren't considered significant byt the hematologists. One thing i read gave an uncertainty of 4% above 50k, 10% below, with a bias towards over counting in the low range.

If the 4% is right, it seems your numbers still indicate increase.

Also, ITP patients have more natural variability. So a regular series of measurements of an ITP patient will have the variation due to the equipment and due to the natural variation.

A 10 % inaccuracy at platelet count 10 is just 1. It could be one off. Now, 5 to an actual of 0 would be a 100% inaccuracy. A 0 is much worse than 5, because a 0 suggests no clotting factor at all. A 5 could suggest some super-platelets that could get the job done. Not saying that your hematologist didn't suggest otherwise, but I would feel much better about a 5, than a 0. AI agrees, or at least when I just asked. I have yet to see less than 5, though, so...

As far as the original post, yes, the numbers don't sound too bad, at the assumed lack of medication. Doesn't seem like your (Don's) immune system is fighting your platelets.

My numbers, personally, just go down without medication kicking into a response mode. At least as far as I can tell, without daily tests. So, therefore, my immune system is continually fighting my platelets, when not medicated. Which means of course, that I have the exact described symptoms of ITP.

Yes, the measurements have a margin of error and, joy, it's different at different ranges. I've been in the single digits (well, single thousands) and variations in that range (undetectable vs 5, for example) weren't considered significant byt the hematologists. One thing i read gave an uncertainty of 4% above 50k, 10% below, with a bias towards over counting in the low range.

If the 4% is right, it seems your numbers still indicate increase.

Also, ITP patients have more natural variability. So a regular series of measurements of an ITP patient will have the variation due to the equipment and due to the natural variation.

My sympathies on the the loss of your dog. I noticed petechiae as we were getting ready to go to the vet to say goodbye to one of our elderly cats. He'd awakened me in the wee hours of the morning as he was struggling due to loosing control of his back legs. (He had a heart condition and a clot that would do just this was likely.) We went straight from the vet to the lab for a CBC draw, and those numbers came back with undetectable platelets.

I wonder how quickly you are able to get CBCs after noticing the petechiae. When i have gotten the counts at the beginning of a bout of petechiae the numbers have been 6k and undetectable. Last year, when i didn't have standing lab orders, the counts were much higher, but it was well after the onset of the petechiae .

My initial consult with my hematologist was quite long, but i think i will be seeing a nurse practitioner from here out. My sense from my primary care doctor (who is a director at a "Healthcare Quality Improvement" organization, as well) is that ITP is in some ways routine for the health care system in my area.

Maybe sharing what you need from your appointments and asking what your doctor's purpose for the appointments is might help align expectations?

I hope your rituximab treatment continues to work. My course of rituximab was completed six weeks ago after two drops to hospitalization levels less than two months apart.

Hi, i'm in my mid 50s. I had several rounds of bruising and petechiae with substantial fatigue last summer which seemed to go away when we finally excluded other causes and settled on ITP. This spring i've had two rounds where i had a blood test at the onset of the petechiae. The first time i was in single digits, the second time "not detectable." Each time we responded with a short course of steroids (dexamethason) and an infusion of IVIG. I've since received a treatment with rituximab as the hematologists here think it may be more effective if it is used sooner.

I envy your confidence in observing your body to know your platelet level! So far all i can observe confidently indicates a drop to a dangerous level, and i wish i could catch it before then. I have had a lot of distressing things happen with family and pet health in the weeks since getting the rituximab: learn ing how to listen to my body and correlate with platelet counts has been hard with grief and stress weighing me down.

This forum *is* pretty inactive, and the Thrombocytopenia group on Reddit is inactive also www.reddit.com/r/Thrombocytopenia/new/ . I just checked the Facebook group, which is private but shows "10 new posts today, 244 in the last month'. I too have avoided using Facebook (although i made an account in the dark ages when one had to be invited), and i'm not sure i will start again.

Yes,  these receptors, the ones that tpo receptor agonist drugs turn on, or the ones that papaya leaf extract turn on (I think they are different ones?), are switches that require a certain amount of medication to turn on. This is why the response comes and goes. Its a very sensitive system that will show a roller coaster ride. We're picky about the range, we're picky about not taking more drugs than we need to. It adds to the likely-hood of a roller coaster ride. Yippee! Be happy with the ride. It could be worse. One thing about it, it does make things interesting. And there are certain advantages of taking anti-inflammatory medications.

Don I agree with Margaret, your questions are best answered by your hematologist - be sure you write down all your questions and take with you to your appt in July (I have to do that or I forget them ).

A count of 79 is good in my book - do you have any symptoms of a low count?

Please keep us posted - let us know what your hematologist has to say!! We care about you!

Hi Don,
I think these are all questions for your haematologist. I certainly can't answer them. But with your current and recent counts, there's no need to worry. They're below average but still quite healthy. Many people here have had and/or live with lower counts. As you have an appointment in July you have a good chance of keeping things under control.
Good luck with it,
Margaret

Hi
I was diagnosed in Dec 2024 with a platelet count of 79.  I have a hematologist appt in July.  since then with other blood work my numbers have gone from 79 to 86 to 101.

Could this be a one time thing and I am now heading back to normal?

Do blood counts have a margin of error.  If my hemoglobin is 112 does that mean that's it or is there a leeway of 1 or 2 up and down?
Several of my CBC numbers are below normal of above by only 1 point.

Thanks
Don

Makes sense to stay with it. Once you leave it, you may not want to go back.Official Nplate site lists a lot of common symptoms. Headache is number one and trouble sleeping is number 4.

There is no perfect treatment, in general. I can't really get past the cost to someone myself, yet, anyway. I haven't exhausted my choices,  to try something else yet. 

I stood back, though and looked at my platelet trends, and notice a switch is being thrown. Either I successfully flip the switch with lots of papaya leaf extract, and it goes up incredibly, or I try a small amount and I drop almost as fast back to the bottom. My new decision is to just take the lots of papaya leaf extract once every 2 weeks and see if it drops any quicker without the smaller doses in between.

This could in effect show a level line, with a 2 week cycle of papaya leaf extract and 2 week blood tests, but we know the roller coaster that is behind it. It seems steady dex or prednisone would smooth things out, but trying to avoid that consistent "help".

Heck of a way to live, I suppose, but that's what we get, I guess. I really wanted that ideal steady maintenance dose, but unfortunately it doesn't flip the switch. Not anymore, anyway.

Lets hope your new dose of Nplate works and eventually you take less and it still works, etc.