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

I miss HAL too. He would be surprised if he found out what I did in these years. Does anyone know where he is?

If you feel that your concerns are not being addressed adequately, seeking a second opinion can provide reassurance or alternative treatment options. It might be helpful to clearly communicate your feelings about the short appointment times and your anxiety. Consider preparing a list of specific questions or concerns for your next visit. ITP can be unpredictable, and fluctuations in platelet counts can occur. It's important to monitor your symptoms and communicate any changes to your healthcare provider.  

quordle

I live in a large metropolitan area with two major university medical schools/teaching hospitals. I've found only one platelet disorders specialist in either system. When I saw him about 7 years ago for advice about how to make my N-Plate work better for me, he was stuck on the outdated view that splenectomy is a "cure" for ITP and insisted I should have one. It was the only treatment he would consider. I refused.

So, I returned to the open-minded, cooperative, willing-to-learn onco/hema I'd seen for 9 years before. He listens to me, takes my preferences into consideration, and never tries to force my hand.

You might be able to locate an ITP specialist (or at least a platelet disorders specialist) by contacting the PDSA organization directly. If you're anywhere near Boston or can travel there, Dr. David Kuter would be one great choice to see.

Am considering switching hematologists and looking for resources to help find a "better" one. So far the only resources I can find are generic "find a doc" tools where nearly "everyone" treats ITP.

I really like my hematologist, for example, when was the last time a doctor called and didn't turf it out to a nurse or NP? But I suspect that she likely sees a small # of ITP patients and focuses more on the oncology side of her "business". Therefore I don't feel she always speaks with great confidence on next steps, full range of treatment options, etc.

So I would like to find someone who sees relatively "many" ITP patients and can therefore speak relatively confidently from experience on various treatment options. I know there aren't many ITPers to begin with and no one can speak 100% confidentially where the immune system is involved.

Bottom line: looking for a hematologist whose sub-specialty is adult ITP/platelet disorders and really "gets it".

Thanks!

Well, a bit of controversy in this older thread. The original post is totally believable. In fact I've had better results than these. Increase of over 400,000 in 4 days of pills. Of course, I don't know what dosage the original poster used on her daughter. 

Now, papaya leaf extract has shown signs of killing cancer cells, but that's not what we're talking here. We are talking a relatively simple thing. Raising platelets. If  the platelets raise then that's it, the platelets raised. It is so easy, with blood tests, to see how the papaya leaf extract works. So easy. 

And from my point of view, don't say well my numbers went up from 70 to 85, so I think it worked. If I am any indication, its a lot more powerful than that! Of course, I probably shouldn't say that. If that's your results that's your results, but a small increase in dose might show you something more. Of course, everyone has to judge for themselves how much they want to take.

 So yes, the complicated thing is finding a maintenance dose, but how many drugs do you want to take as a maintenance dose? This is why I found papaya leaf extract, because I wanted a maintenance dose with a supplement that I felt could give me a maintenance dose, and head off the second line defense drugs, that were going to be next.

Now, this supplement has full power to be the safety net drug for me, too, like I said earlier. I can increase my platelets at home the same as if I gave myself ivig and platelets at the same time. But of course, I can't give myself ivig and platelets, and lets not talk about the cost of that treatment.

I too wonder about the tea method. Will the boiling  point improve digestion? Will it weaken the effect? I may explore these questions at a later date. I thought of opening up the pills and doing this last time, but since I'm still working on a maintenance dose, I don't want to complicate, at this time. I mostly hear the tea tastes terrible. That's the other problem with the tea.

Wow! I would have thought the count would be single figures. 

Nosebleeds for 10 months would seem to be chronic Itp. Then there's CTP, which nobody talks about on here. That is cyclic thrombocytopenia. I guess we can all hope for Itp. CTP has wild platelet fluctuations for no reason.

I think/ wonder about her a lot.  I know I miss her posts.