I traveled through Europe on a cruise last year while my platelets were fluctuating between 50 and 80. I made sure to carry a detailed medical letter from my hematologist, travel insurance that covered pre-existing conditions, and identified hospitals near each port - thankfully, I didn’t need them, but it gave me peace of mind.

Well, that's another way of looking at it, I guess. But, 5 count is scary. I have had it about a year at least, 11 months that I have actually known, though. 

I've seen 4 count. So, I don't really see how its an option not to treat it. How do you take blood counts, if you're not going to treat? 

I think I could settle it down with prednisone added to the papaya leaf extract, but I don't really want to get into chronic use of prednisone. And that is what it would become.

I appreciate your feedback, and looking at it from another point of view, that is easy to think is not even an option, sometimes.

So you personally fear high counts more than low counts? I mean over 200 count is supposed to be scary (bad) with TPO agonist drugs, but I'm not sure that max applies to papaya leaf extract. Who knows...

The highest my count has been, that I know of, was 401k and that was too high for my liking.  That 505k would have scared me - too high is stroke or heart attack risk.

Sorry it just sounded like you wanted to make your # high before you went to see your hematologist.

How long have you had ITP?     Would it help do you think if you relaxed and quit trying so hard?   We used to have a monthly gathering of ITPers at one of our houses - there was a man who had a count of 5k and never went higher - he didn't let that stop him for living, he & his wife even adopted a child.   A lady went to London to have that test ( can't recall the name of it, can't get it here ) done to see where her platelets were being destroyed - test showed it was in the spleen.  She came back here and had a splenectomy, count went up for a couple months then back the the normal (for her) 5k, so the splenectomy did not work, she was a happy person and didn't let the low count stop her from living.   Everyone in our group had low counts, not as low as those 2 though, most of us said pffffffft to ITP  

   

Doctor agreed with the trend pointing to a necessary sooner blood test. Will have one in a week or less. 

MelA wrote: Also why do you want to please your doctor?

Well, that is an interesting question. I guess you tell me. I thought he could always say, if I don't try to please him I should find someone else. I mean he does give me the blood tests that I need, so I don't want to change. Am I worried too much about pleasing him? I mean he is being reasonable. He tells me that I should take dexamethasone, but he accepts that I want to try more papaya leaf extract before I settle for the dexamethasone, which would be an add-on to the papaya leaf extract. He just stays far away from the administering of the papaya leaf extract.

MelA wrote: Your count is within range why do you want to increase it.

You have to look at where its trending, not where it is. So, its gone from 505 to 165 in 2 weeks. My efforts at turning it back up were unsuccessful. I KNOW that this means that the numbers will keep descending to about 5, which will take less than 2 weeks, if I am unsuccessful at turning the "switch" to huge platelet-increasing mode. My numbers are a big saw-tooth chart where numbers are either going up hugely or going down hugely. I never actually have been successful at turning them in the middle, but I thought that was because I hadn't tried hard enough. Unless some survival mode determines when the "switch" gets thrown, when they are low. Anyway, to keep them from the 5 area, I have to realize that I'm in the danger zone and heading for inevitable basement, if I can't turn it early. This medication does not work, for me, in any way similar to other people's results with other medications. It works, but in an out-of-control way, especially lately, so I don't know if it will be my last medication, by itself, but welcome to ITP, right? Maybe I'm just missing some other natural that can fight the destruction aspect...

Also why do you want to please your doctor?

Your count is within range why do you want to increase it.

I moved to Tokyo along with my husband & sons shortly after being diagnosed with ITP and on 60mg of prednisone.  Once in Tokyo I had a fantastic hematologist who knew my state-side hematologist (small world).  Later we moved to Hong Kong and that hematologist didn't know much about ITP and would panic if my count dropped and would want my spleen removed - no way!  We traveled to Thailand, Mainland China, Macau, Italy, the UK, Singapore and more.    I've also been on various cruises since diagnosis, including a river cruise in the US and Europe, trips to Ireland - and to be honest I didn't know what my count was before o any trip, just the moves.   Know I am not answering your question but just thought I'd let you know that ITP isn't the end of everything - you can still live. 

Is this a river cruise?   Do you have a hematologist, if not you should have one, if you do then talk to him/her about your trip.  The 2 of you can come up with a solution for your trip.    I would think a cruise ship would have medical onboard and probably could do a blood test. 

Back to 165, so a worse drop than to 200. Have to try another pulse of papaya leaf extract, and hopefully get a blood test in a week.

Well I am getting Decadron IV, Ruxience IV and N-Plate shots weekly and my platelets are still only in the 20's Because IR (Interventional Radiology) didn't want to look at my Hemodialysis Graft my Nephrologist ordered a Ultrasound of the Graft. The US showed high pressures on both ends of the graft indicating stenosis. It needs to be addressed to prevent graft failure!! My Neph is going to talk to IR. I will find out what the plan is this week. Nervous. Will talk to my Hematologist about switching from Ruxience to IVIG.

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.

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.

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!

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...

 

 

 

  

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? 

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

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.

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.

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 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.