IN ITP TREATMENT IT ALL COMES DOWN TO A MATHEMATICAL FORMULA

After reading and reading comments and experience. I came to the following conclusion:
ITP Treatment relies on a mathematical formula.

Platelet Counts (PC) = Platelets Production (PP) - Platelet Destruction (PD)
PC = PP - PD
This simple formula brings 2 intuitive principles:

1 - Modifying PP or PD will modify PC
2 - PP and PD can be altered by hundreds of factor known and unknown.

To add some literature to this obvious conclusion, I would say that Treatments needs to keep PC over 30.000 but the variable PD and PP are extremely volatile. That's why there is so much frustration and even apparent contradictions from one case to another.

I will try to make an example. It has been said by some that vitamin supplements (or Natural & Alternative treatments) helped some people to increase the PC but others denies it. The answer relies on the formula. If PD=10 PP=10 therefore PC = 0
PC=PP-PD
For those who manage to produce and increase of just 30% of Platelets thanks to a vitamin and diet will basically manage to alter a variable in the formula and get a PC of 3 (30.000?) but for some the increase will have no effect if PD (that obvious cant be negative since you cant destroy more platelets that you actually have) compensate and destroy the increase. In other words we will end up in PC = 0 again.

However remember how many variable affects both PP and PD.
PP can be affected by a variety of factors from food to sleep and a simple cold.
PD can be affected by a variety of factors related to the immune system such as food, health, stress etc... (There is even the paradox that a weak immunity system can even increase PC since it might decrease the PD)

To top it all, the PC in the formula varies not only from person to person, but from season to season, through the years and through the different environments (eg moving from one city to another).

The level of complexity is immense.
Those lucky enough to get a steady count over 50.000 without medication might have simply be able to alter the PD and PP variable but the problem relies on knowing what are the elements that altered them.

Obviously drugs (or splenectomy) will alter PP and/or PD in and induced way. However, the body (and maybe or pockets also) might pay the price of modifying those variable.

CONCLUSION: Until a cured is found ITP will carry on being one of the most unpredictable illnesses human can have. However, those lucky enough to have a high PP naturally induced might have bigger chance to find an extra natural "booster" to make the PC in the formula over 3 or 5 by overrunning the PD figure. On the other hand, those with a very high PD will almost end up needing drugs or splenectomy to have a sustainable PC since nothing will work (alternative medicine, herbs, living in the mountains, stress free live etc...). I wish I know already in which group I am.

I recognize all these statements are obvious and known but for those with a more rational (mathematical mind) putting it in a formula answers many questions.

I'm not into your CONCLUSION - for one I don't feel ITP is an illness - nor do I feel it "...being one of the most unpredictable illnesses human can have", "...those with a very high PD will almost end up needing drugs or splenectomy to have a sustainable PC since nothing will work..." a splenectomy is not a given as a way to have a sustainable PC as it may not work and counts will drop low again as we have seen here many times.

I respect your view.

As for me it is an illness. Yes better than hundreds others. Something you can live with 100 years if you meant to. Where symptoms are perfectly bearable... yes I agree but is an illness.
it made my life miserable when I was on pred, it scared me at the beginning and raised a question mark when I look at the future....

As for splenectomy I don't have statistics. According to my doctor there are many chances the count goes up forever.

A bad result after splenectomy doesnt makes my formula invalid. First of all if the platelets are in fact been destroyed in the liver obviously removing the spleen will have little impact in the PD. Secondly the PD rate can be so high that even without a spleen the platelets can continue been destroyed in the bloodstream.

Thank you Groucho for your mathematical formula for ITP- I'm enjoying it. I'm not such an analytical thinker, don't think in terms of formulas. But YES you are seeing that it is a problem of both production and destruction which is a rather new way of seeing ITP. It used to be thought of as only a problem with destruction. But with the new view of ITP being also a production problem, we got new drugs Nplate and Promacta which have been wonderful. Some doctors are not up on this thinking so its important to learn and educate ourselves- as you have. And as you said, ITP very complex with many unknowns. The longer I have it, the more I see the complexity. And because of the complexity of the immune response and how it can change over time, I have to also agree with what MelA wrote. Everyones experience and point of view is valid and adds to the discussion- so thank you!

I'd like to add one tiny monkey wrench into your conclusion. In this study they have found that patients with low natural TPO- low platelet production actually have a better chance of going into remission from Nplate and Promacta. But if the patients have a natural high production of TPO, the drugs don't work at all. So the people with the "worst" relatively speaking problem have the best chance of cure.
www.bloodjournal.org/content/118/21/3288?sso-checked=true

Also another complicating factor- ITP can be driven by another underlying disorder such as Lupus. I've read that 15-20% of people with ITP have Lupus. A person might not know they even have Lupus- no symptoms at all except the ITP. In my case, after 9 years of ITP I now have symptoms of Sjogrens/ Lupus, plus other autoimmune disorders. I seem to collect more each year! So with Lupus ITP its still platelet production/destruction but the problem is being driven by the Lupus antibodies(I think). So the idea then is to manage the Lupus which will in turn bring up the platelet count. Well, that hasn't worked for me, so again its not simple! hah

What I've gathered over the years is- Beware of treatments- know what you're getting into. Don't over-treat- people can live with low platelets. The TPOs are really great drugs for most people, they can restore a person's quality of life and we should have access to them. Get a good hematologist who is smart, experienced and easy going.

Poseymint
15-20% of people with itp develop lupus ? I don't think so !
www.itpsupport.org.uk/images/downloads/american_perspectives/28.pdf
it says it's rare for people with itp to develop lupus

To speak with numbers :
www.itpsupport.org.uk/american/27.%20What%20happens%20to%20adults%20with%20ITP.pdf
it said on a study with 458 itp patient , only 2% developed lupus

by the way , may I ask you two questions ?
1st - are you getting treated for any other autoimmune disease ? (do you take any immunosuppressive drug )
2nd- if you don't , on what dose of Nplate are you and whats is your average count on that ?

Dear Poseymint,
I am glad you enjoyed my formula comment. I happy for that at least.
Regarding your remarks on the formula. Indeed, if Lupus is in the equation the level of complexity goes up exponentially and the formula is affected.
On the other comment, I am not sure the link you sent suggest that the more platelets you have the more attacks you will necessary have by the antibodies. It goes against Promacta experience.
However, lets make an exemple:

PATIENT A. Produces 120 of platelets in a given time. PP=120 K . Without any health issue (surgery etc...) his/her antibodies destroys 150 K. PD=150 His count will be 0. PC=PP-PD but in fact his PC according to the formula is minus (-30). This patient manage to get an increase of 40K thanks to any of the available treatment you might have. Mathematically speaking nothing will get his count of 10 K in a regular steady manner. He/She will say that nothing works for him/her. Really nothing worked? It is not true because Patient A got an increase of 40K but useless for what we are looking for.

PATIENT B. Produces also 120K in a given time. PP=120K. Without any health issue (surgery etc...) his/her antibodies destroys 100 K. PD=100. His/her count will be 20K. PC=PP-PD. This person will be oscillating around 20K cursing and praying he/she gots just a bit better luck next blood test. What if this person gets a boost of just 20K on her PP. He/she will be oscillating around 40K what is not bad for daily activities. This person will end up thinking her vitamin supplement worked.

As a matter of fact, it might be my case. from a 29 K 2 weeks ago I got a 43 K today and the only difference was a multivitamin pills taken daily and 2 or 3 kilos less since I am a bit of diet. Was really the vitamins? I dont know.

However, seems to me very interesting that Lab test can give to patient an estimate of the PP and PD of our bodies since this might be the key to find a manageable treatment. At the same time it can give some ideas of the chances of success of any particular treatment.

I am not a doctor thou. Just a thinker

Lman you quoted Poseymint as saying: "...15-20% of people with itp develop lupus..."

She actually said: "...15-20% of people with ITP have Lupus."
The key word being 'have', not 'develop'

Actually I know ITP people who do not have lupus - also I know non-ITP people who have had lupus for a number
of years but do not have ITP.

Groucho I look at an illness as a cold, sinus infection, flu, pneumonia, and the like - something that makes one sick/feelsick
for a period of time. I've never felt ill/sick/under-the-weather during the almost 30 years I've had ITP - I have a chronic
auto-immune condition.

Regarding the amount of platelets one has - I was told since my count is low those platelets I do have are super platelets,
big ones because they are new.

Lman- Yes you are right- thanks for the correction. I worded my statement backwards. Its "15-20% of people with Lupus also develop thrombocytopenia" or ITP. The two disorders can be along side each other as in my case, or the ITP can be driven by Lupus. The treatments might be different depending on whats going on. Anyway I was pointing out again how complex ITP can be and how everyone seems to have their own version of it.
www.ncbi.nlm.nih.gov/pubmed/10771375

The study that I linked in the previous post is about Thrombopoietin, not platelets or attacks by antibodies on platelets. It is talking about platelet production.
"Thrombopoietin is a glycoprotein hormone produced by the liver and kidney which regulates the production of platelets. It stimulates the production and differentiation of megakaryocytes, the bone marrow cells that bud off large numbers of platelets."
The study is saying if you start out with a lower amount of natural Thrombopoietin then Nplate and Promacta will work better and may even put you into remission. So people with a natural deficit are ending up in better shape than people that start out with a normal healthy amount of Thrombopoietin. The lab test might tell you how well Promacta or Nplate will work, but still its trial and error because you may not fit into the study- you may have something else going on!

Groucho, great your platelet count went from 29 to 43. Who knows about the vitamin supplement, you just have to play around with things and watch the trends. I recently tried high doses 3000mg of Vit D after reading about Vit D and platelets. It didn't seem to do anything to my counts.
I think of ITP as like a puzzle with a lot of pieces. We just try to collect as many pieces of information as we can and try to put them together. And see what fits for you as an individual. But there are a lot of MISSING PIECES! arghhh!