I strongly agree with you on this. You've found a method that works pretty well for you. I personally use a variation of it by taking a short, low-dose course of prednisone to ensure a safe count before an invasive test or procedure. 

Those of us who've been dealing with ITP for a long time know it doesn't have a one-size-fits-all treatment plan. So, when we find a plan that brings safe counts while causing the least amount of side effects and - not inconsequentially - alleviates the expense of hospitalization, it only makes sense to stick to it.  I've always stressed the value of finding an open-minded, cooperative hematologist to partner in treatment instead of a dictatorial one.

You can try to diplomatically work on changing his mindset. That sometimes works. I hope it will for you.

Hey,

I was once hospitalized in 2021 for a very minor viral infection, where my counts dropped into single digits, and I was sent to the hospital.

Ever since then, I have taken this rescue prednisone regimen. A few other instances of such infections also showed me that counts can drop very quickly, matter of hours. You wake up in the morning, look into your mouth, and see symptoms.

Now this new hematologist does not believe in that. Past two doctors were ok with it. He says it could cause the flu or whatever the ongoing infection is to spread. He wants me to take a test to see if they are dropped, then only to be prescribed prednisone. 

This is very inconvenient since I live alone, and it is very scary to be in such a situation. Also lab currently takes multiple days (yeah, read it correctly) to give results. Even with a fast lab still it is still very inconvenient to disrupt my life and work to do that, as there is no guarantee when they will drop. What do you do? Take a CBC daily when you are sick to avoid a bit of prednisone?

His other suggestion was taking IVIG, but again very inconvenient due to the administration time and insurance approval for a viral infection. 

Are all these worth avoiding prednisone for a week? I usually just take 20mg for a week or so. I simply don't buy his argument as I know you guys have prednisone in your arsenal.

lauralordelaure wrote: It’s possible you may not need immediate treatment if your only symptom is easy bruising, but your low platelet counts (19–21) suggest a discussion with your hematologist about risks versus benefits is crucial. Non-steroid options like TPO-RAs or Rituximab could be safer for your bones, and optimizing osteoporosis management (e.g., bisphosphonates, calcium) is key if steroids are used. Share your concerns about bone health with your hematologist to tailor a plan that balances both conditions.

In my opinion, this moment for a new patient should be addressed with a hematologist, like you said.  
 
Then, the thrombopoietin test could be telling, before any medication, to see if there is a shortage of thrombopoietin which is responsible for platelet production. This will help you, I believe,  on second line drug choices down the road if options start running out.
 
Then try papaya leaf extract and adjust dose with the bi-weekly blood tests. If you find this works, then you have your maintenance and your safety net if the number drops further, to keep you away from the steroids, and/or hospital. 

Of course, don't expect complete acceptance of the papaya leaf extract from the hematologist... Its something that can't be denied, when it works, but their curiosity is often limited. You need the blood tests, so hopefully you find a relationship that works. He will watch the numbers, and as long as they are not going into the low serious zone, things should be good.

It’s possible you may not need immediate treatment if your only symptom is easy bruising, but your low platelet counts (19–21) suggest a discussion with your hematologist about risks versus benefits is crucial. Non-steroid options like TPO-RAs or Rituximab could be safer for your bones, and optimizing osteoporosis management (e.g., bisphosphonates, calcium) is key if steroids are used. Share your concerns about bone health with your hematologist to tailor a plan that balances both conditions.

So, a new test, new worries, but maybe still ok. My myelocytes and metamyelocytes were suddenly measured at the lab. This was scary for me because I see these results and they are considered high for existing in the blood at all! 

Well, here is my hope; I hope that these myelocytes and metamyelocytes are being released into the blood because of the stimulation of the bone marrow by the papaya leaf extract (and the recent dexamethasone, which together raised my platelets by 48 fold in one week). My white blood cells and red blood cells are ok.

Hopefully it will be business as usual for my papaya leaf extract maintenance dosing. Anyone else have any experience with their supplement/drug raising their myelocytes as the bone marrow is stimulated?

Never mind, platelets came back up extraordinarily with dexamethasone and papaya leaf extract, in one week. I have seen the dex not work on its own, so I give the credit more to the papaya leaf extract, that I mixed (pills with food) with less food, than I have been lately. Will say that it seems that the papaya leaf extract and dexamethasone do work pretty well together. Numbers came up by almost 50 fold, since my number was only 8, last week.

I try to be clear on this, so, I just raised my platelets but not in the impressive way I have in the past. I only know by my numbers, and, while I just doubled my numbers, they were very low, so going to take dexamethasone. I have avoided this for 6 months, but can't deny the papaya leaf extract is not working as well right now, for whatever reason. Maybe the body has figured out how to fight it, bad batch, can't mix it as much with food, I don't know.

That's great Janet! Were those two steroid shocks Dexamethasone pulses of say 40 mg, 4 days in a row? Just curious, since that's common for ITP. I realize though that you said it was a treatment for something else.

 Yes, I did get a headache when my platelets went down last time, for one night.

Good to know about the sleep number bed! Thank you for sharing your observation!

I’ll give an update to my own thread.  So, best as I can tell (hard to as Anthem and Northside hospital system were fighting at the time of my last treatment) 4 doses of Truxima cost $57k or so  (in terms of what Anthem paid out).  This time around it seems 4 doses of Truxima of 880 mg each are going to result in Anthem paying $64k  (16k each).  Ug.  And the nurses in the infusion center call Truxima a cheap medicine!   If Northside had their way they would be getting closer to $200k or something stupid. I don’t know where they get their numbers as they know what is contracted but still try to bill crazy stuff thinking somehow the insurance carrier might pay it.  

Anyways, no idea how this compares to things like N-plate. Hoping I never have to find out.

Possibly.  I waited too long this time and got all the way down to 2k when I finally tested. Bad, bad of me.  Won’t be doing that again.  Luckily I responded well to Prednisone so they gave me that and sent me home instead of over to the hospital.  Anyways, I did not see any Petachia until just before testing.  So yeah, my main indicator is actually bleeding in my nose that I need to pay careful attention and fatigue. I was very tired the few weeks before and should have taken that as a sign to go get a cbc.  HRV, maybe. Probably. I actually have a sleep number bed that measures that and it did say HRV had changed so… Still so many things affect that that I don’t think it’s anything other than a secondary clue to the more obvious ones like my nose and gums bleeding. I just got lazy about it…

 So I can only offer anecdotal evidence that maybe Truxima is not as effective. You tell me.Here is what I have had:

1st time - 2 doses of Rituxin (basically 1/2 of normal). Remission lasted little over 2 years.
2nd time - 4 doses of Rituxin (ie: full dose).  Remission lasted 5 years.
3rd time - 4 doses of Truxima. Remission lasted 3 years
4th time - 4 doses of Truxima, undergoing now, just finished 2nd infusion.  Remission length? We’ll see.

Like you said though they won’t give me Rituxin just because i ask, it’s all up to the insurance what they would pay for.  I guess if Dr. believed it was better he could try and advocate for it but I don’t know the evidence is there.

njppp.com/fulltext/28-1486322158.pdf

People want to know why Carica papaya leaf extract works. Well here is the reason, or two of the reasons:

"The active ingredients of CPLE are known to upregulate ALOX 12 and PTAFR genes which in turn are responsible for increased production of megakaryocytes and its conversion into platelets. Clinical evidence shows that CPLE increases ALOX 12 activity 15-fold and PTAFR activity 13.42-fold which is responsible for increased platelet production in patients with dengue fever and dengue hemorrhagic fever.[11] Hence, this study was planned to explore the possibility of using CPLE in the treatment of CIT."

When you increase important platelet activity 15 fold for one, and 13.42 fold for another important activity, there you go. 

As always, depends on the dose. If you don't use enough, then it won't even help. But it can knock the count right out of the park, too. Its a sensitive thing, and I still don't have it under control, yet. Wish me luck.

I will say that in this study, they did use a large amount. They used 3300 mg per day (for 7 days). My favorite for getting platelets up quick is 2000 mg per day for 4 days straight. So be careful. You seriously don't want to go overboard, so you need consistent blood tests to do this. Of course in this study, you would think that some of the patients may have gone overboard...

 

Actually, this time my platelets dropped drastically and my monocytes went up a little more than last time. Soo... never mind I guess  on the connection that I had before this.

Actually, I did feel I was fighting an infection, so maybe that was the influence for lowering platelets and raising monocytes...

I guess I should have said my mpv is high normal. I see it goes from 10 to 12 and 1/2. When I was at 12 and 1/2, my platelets were 21. When my platelets go up, sometimes 450 to 500, I see, expectedly I guess, lower mpv. Now, my platelets don't fluctuate that way for no reason. Its just me trying to get the medication right. 

Maybe you might want a bone marrow biopsy if you are worried about cancer. Mine wasn't too bad a procedure, my doctor explaining what he was doing as he did it. It was negative. You'd have to run this by your doctor. I could be off on this being something for you to do.

I’m worried it isn’t my immune system and it’s cancer and I’ve been misdiagnosed

That’s interesting. What is your platelet count?

Well, yeah, you're a bit on the low side, but a consistent 140 is 40 above ITP, so sounds pretty good, for now anyway.

I'm not really up on platelet size. Big ones are supposed to be younger, right? So are you worried that that means your platelets are being destroyed by your immune system?

Yes, I guess if you are actually out of the preferred mpv range, that could be a problem. I'm glad you're pointing this part of the CBC out. Since its only abbreviated, I haven't looked closely at mine. I see mine is in the middle.

Thank you. I’m more concerned of my platelet count normally. I’ve been told I have itp as count at 140 with large mpv. Been this for years. Apart from when I was pregnant. But to me itp has flare ups. Mine just sits at this figure other than when I’m pregnant.

In the interest of comparing to what your doctor is doing, here is some suggested protocol for your exact situation:  ashpublications.org/blood/article/121/1/38/31058/How-I-treat-thrombocytopenia-in-pregnancy

Sorry for the scientific stuff that could overwhelm you again. Just an example of all the stuff out there, if you can understand it.

 Now, look up Gestational Thrombocytopenia. Google is the way to go. Says your only "problem" here, most likely, is that another pregnancy, you have more chance of it happening again than the mother next to you. Don't read that as its the end of the world in the event of another pregnancy. Not saying that... It would have to bother you at the worst time, though, wouldn't it?

Persistently low platelet count is ITP. So, you seem good. Maybe he meant you had a one time low platelet, that, if was persistent would be ITP.

Hi so my anxiety level is through the roof! During my pregnancy they noticed my platelets were dropping. They dropped to around 50 by the time I gave birth. All very dramatic. Anyway 2 weeks later my levels were up at 244 so that was that. 
A year later they were at 160 and now at 140. So I went to my drs and they told me that 12 years before my pregnancy they ranged between 132-140. No massive drops just constantly low with a mpv of 12. So large platelets. Anyway I got referred to a haematologist who basically looked at me and said you’ve not got blood cancer you’ve got itp. But itp to me goes up and down. Other than when I’m pregnant mine stays the same. 
He reluctantly offered to look at my blood under a microscope which I’m due to have a call about. He just seemed very unbothered. I really need some advice on whether it does sound like itp that I have. 
All of my other blood work is great. All normal and has been the whole time. 
It just doesn’t make sense to me. If anyone can advise that would be great. 

Thank you
Keely  

Going by what I have learned only, with any luck you yourself will be your own best Doctor in this. You just need the willing doctor that you already have in place to do what doctors do. As long as you keep learning and thinking about this, you will know what you want the doctor to do. Anyone not good at making these choices themselves is at a disadvantage. There are entire areas of choices that the doctor will not even entertain... You have more choices than the doctor. If you are good at making these choices, you may very well have the best doctor, already, as your teammate. Lets face it, we spend a lot of time thinking about our case. The doctor does not spend much time on our case. Who you going to agree with? The internet is not just for fixing your car.

Yes I am fortunate...many doctors and an org focused on blood disorders. But 4 months to get an appointment with *first available* doctor!

I looked up that blood center. Wow, I'm amazed! How fortunate you are to have all those excellent choices! Wishing you the best luck in finding the right one for your situation.

Thank you for the response and tips.

Also live near a large metro area (Phila) so decided to try the Blood Disorder Center at one of the “biggies” for a second opinion.

But I don’t plan to totally leave my “open-minded, cooperative, willing-to-learn onco/hema” doctor unless/until it makes sense.

Cheers.

Thanks for the replies.  Bit of an update.  I have been doing immunotherapy since November for the mold allergy and that is going well, seeing some symptomatic improvement at least from exposure when in the garden/greenhouse.  While I'm still in the roundabout of getting shoulder shrugs from doctors, I have mostly dialed in what helps and seems to support both symptomatic and platelet improvement.  I'm still taking omeprazole daily.  I pursued histamine intolerance, tried taking pepcid but unfortunately after a few weeks started getting bouts of queasiness and inability to finish meals so stopped taking and that resolved quickly after.  I also found that my calcium + supplement is important as well, while it doesn't dramatically change things it does "even" things out and I have less ups and downs in energy/fatigue etc, and importantly erectile dysfunction is mostly gone and haven't needed medication in almost 6 months for it. B12 of course.  I take a magnesium supplement once a week, though this is one I'm not sure how much its doing if anything beyond it being good to have, I dialed back how much I was taking and have yet to notice dramatic change.

I looked into DAO supplement for histamine intolerance, but have yet to find one that is third party tested or has proven amounts.  Generally leery of supplements given their lack of regulation and you have no guarantee what you are getting.  I am hoping that as my immunotherapy continues that will lower histamine in general as my body calms down.

GI is still being looked at.  Have a new GI doc and will be doing a colonoscopy later this month.  IBS is something that I think is likely.  Diarrhea is still relatively often though far less regular.

Still no answer from docs, omeprazole shouldn't be improving my platelets or symptoms even though it is the primary reason they have improved.  Maybe will get an answer, maybe not.

The improvement you noticed with omeprazole and fiber, plus your observations around high-histamine foods, definitely seem worth exploring further  Doodle Jump