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.

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: 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.

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.

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.

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?

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.  

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.

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.

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.

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.

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.  

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!

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

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

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

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.

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

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!

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.

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.

Hi Joanne,

How is this going for you? I take emergency vitamin C packets everyday and when I am consistent with taking them everyday, I notice that my flares are less frequent.

I can't say the vit c increases platelet numbers but it does tackle fatigue, I stopped breaking blood vessels in my legs without injury, and it is known to help you make use of iron.  My dad was anemic so I want to avoid this.  I went to two board cert allergist due to symptoms and one told me I'm allergic to all food except proteins and the other one said I wasn't so keep eating everything.  Wanting to go out to eat with friends and family I chose the guy who said didn't exist.  My numbers went from 86k to 50k so I am back on the gluten free dairy free diet.  I'm also at the age where hormones are changing so I am not sure if this impacts platelet counts.  I treated my thyroid for graves and I could not stop having bleeding problems.  I noticed once I ate the gluten my tooth started bleeding after flossing and wouldn't stop for hours. I ate two slices of doughy pizza and woke up with one nostril bleeding and fresh blood all over my tongue.  I also felt sick for two days so I think I have my answer.  Luckily I've been cooking gluten free for some time and know how to make good dinners. My father got C o p d from gluten and dairy and could not hold a conversation without coughing I got him off everything and cried after having a conversation without having to wait so long to hear what he was trying to tell me.  Your body decides how its going to respond to what it doesn't like.  My immune sys is a bugger.  I was the only kid covered in poison ivy despite my family members walking on the same paths and started my relationship with pred at a young age. The vit c keeps me energized so I can cook all these meals so whether it's absorbic acid or fresh c I will keep doing it just not late in day as it can act like a stimulant.

Here's an update on my progress. Pushing the lever!

What really seems to contribute is chemo + dex. But fingers crossed that's my body starting to realize something too.

Also, talked to two more hematology doctors, both pointed out that Helicobacter is in an active phase and can trigger ITP (well-researched), so here we go, we started eliminating it.

how can I delete a reply on this forum once posted? Accidentally replied twice. 

Itpjourney wrote: 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.

What a ride!

I'd rather want something smooth between 100-200, slow and easy. But not too slow, my current dex can last for 8 weeks, tops. 

Dare to ask, how long rate you on dex? 

You are so responsive to Papaya, I may come back to it, but problem is that I'm already on three meds and it's really hard to isolate them and tell which one is working. So probably papaya is desert, when PLT go above 100.

Hope your plt levels are better now. Mind sharing? 

Your time lines are a little off between charts. Your first chart showed peak platelets at 4th of July., end of papaya leaf extract. Your second chart shows peak platelets at 1st of July, which is in the middle of your stint with papaya leaf extract. 

I have always done 40 mg 4 days in a row of dexamethasone. I have done this 4 times, I think. I have some on hand now, in case I "need" it. I thought the daily would more likely be prednisone. But, maybe it doesn't matter, just take less, since dex is stronger than prednisone. 

I haven't had a blood test since last week's 505. Again, when its high, I try to skip the weekly blood test, since the doctor doesn't get concerned until its low. If next one is in the middle though, then it will have my attention, and I may ask for a weekly then, explaining it to the doctor that mid is always on the way to low. I'm onto what its doing now, so eventually I should figure out a better way to address what its doing.   

Of course, my average platelet count is in the middle, but if I get more aggressive about keeping it out of the basement, that will mean spending more time high. So that is questionable, too. I am starting to take some natural blood thinners, which also may help stop destruction, so they could help when the platelets are high, to fight clotting.

I guess we are examples of opposite ways to fight ITP, if anyone is watching. Your way is certainly better in some ways, but not every way. But even though papaya leaf extract reactivity is not in question, I still haven't proven it to be completely viable in a maintenance kind of way. Thanks to that stupid switch. And your medicine seems to use a different system that doesn't have the sensitive switch. But, I don't think my papaya leaf extract switch is as over-reactive either, if I were using a prednisone.

One thing, I wouldn't like, if I started using the expensive TPO agonist type, is if I still needed a prednisone. If that were to happen, then I would just think that I should be using a prednisone consistently with my papaya leaf extract. That would have to be my next choice, I suppose, using a prednisone WITH the papaya leaf extract. I guess I would not have patience for the TPO agonist if I see myself still needing a prednisone. 

I guess a large part of my game is, what can I do without prednisone (dex, etc.)? Still unanswered...

 

 

 

  

Joanne I wasn't sure if one could get COPD from gluten and dairy so searched it and found this:
"Consuming dairy or gluten is not a cause of Chronic Obstructive Pulmonary Disease (COPD). However, these foods can potentially worsen symptoms for some individuals who already have COPD." (sorry, can't find where I put the link to this quote)

From Johns Hopkins:
" A gluten-free diet is for people with celiac disease or other health conditions that make it hard for their bodies to process gluten."

I love Cuties and eat way too many of them - they no longer are in season, any in the grocery store now I was told by the produce manager is from South America, I tried them and they were awful!!

Good luck to you and your Dad!

That is a huge jump in a short time - why do you want to do that?  Have you heard of a stroke?  Just be careful - not everything is good for everyone.   And why would you want to make your hematologist think your number is the norm by wanting to get it high again before you see him/her - giving a false # really.

Thank you for asking, and being concerned. 

Well, its complicated, and less than ideal, I admit. Here are the factors at work:

1, I don't know how much I am going to raise my platelets. Sometimes I get no reaction. Its like flipping a switch. Unfortunately, for me, papaya leaf extract raises my platelets fast when it raises them. Actually my first and only hospital stay raised my platelets from 5 to 515, and that was without papaya leaf extract, so maybe I just have a very reactive condition.

2. When I go under 10 platelet level, my doctor pressures me to get them up. Last time I thought I did what it would take to raise them fast, and they went from 5 to 12 in 4 days, not fast. But then one week later they were at 505. Its just unpredictable. I'm not surprised anymore when they go up fast, but unfortunately it doesn't always happen. So, that's my excuse for accidentally going up high. 

3. Of course I and doctor want to keep them above 10, so my only choice now is to try to stop the plummet in the middle, and not at the bottom, but obviously it could go even higher during that effort. I'm not trying to fool the doctor. I'm just trying to use my 2 week blood test to my best advantage. I need to send the numbers high just before the blood test, so that I MYself know they are high again, instead of plummeting. If I fail to do this, and I might fail, then I may see a number around 200. Now, you might think, as I have in the past, that 200 is great. Well 200 is just on the way to 5 for 2 weeks later, so I will have to point that out, and request a special one week blood test, since I don't usually go that often when the count is "normal". 

Now, Mel, you may have thought that I was going to take the supplement like just before my blood test and "have a false number, really", but I mean take enough ahead of time so it gives the blood test the time to show a real raise, not a "false" lack of raise, if I understand what you thought. Part of my goal is to please my doctor without going to other drugs. But, I need to know my true numbers more than anyone.

4. Now, of course I'm glad to have as many blood tests as I have, but if I had total control, I would do things a little differently. Until I have my own at-home blood test, it is what it is. But, there is no way to avoid these 500 numbers, by doing what I'm doing. Even daily tests would not avoid these high numbers, I don't think. But daily, or weekly tests could help me avoid the low numbers. We're all at the mercy of the blood tests. In my case, I have more freedom with weekly blood tests when the numbers are low. As far as seeing the doctor, I don't see the doctor. He sees all of my numbers and messages me when they are low. And, I actually see all the numbers usually before the doctor sees them. And of course when the doctor points out the numbers are low, well, I already know the numbers are low. He never points out any problem with going up high and quickly.