Use of Branched Chain Amino Acids (BCAA) with ITP

Anyone using BCAA for long term chronic refractory ITP?

Why, are you selling it? It doesn't claim to help ITP.

No, I'm not selling anything. I have longterm chronic refractory (over 20 years) ITP and have been on just about every treatment regime there is. My hematologist recommended I try a supplement with BCAA (Branched Chain Amino Acids) Valine 2 grams a day plus Leutine and Isoleutine also. I was just wondering if anyone else out in the PDSA has tried it. Thanks. Mary

I haven't seen it mentioned here at all. So let us know if it works. What is your platelet count normally?

My platelet count is considered "good" if it's at or above 25,000. Usually runs in the single numbers to low teens. I've been getting IVIG Infusions every few weeks for five years now, just to keep counts up enough to function as I have several other auto immune and unusual medical conditions. I've tried about every other treatment/therapy out there over the years. I'm not a candidate for any of the newer treatments, e.g., N-Plate, as my bone marrow is still making platelets (albeit big misshapen ones), and my immune system continues to destroy them.
I also have a genetic blood coagulation disorder, Factor V Leiden, which causes me to over-clot. Does anyone else out there with ITP also have Factor V Leiden? Too bad it doesn't cancel out the ITP I've had several DVTs and Pulmonary Embolisms (due to the Factor V Leiden), so have been on Heparin, Lovenox, Coumadin in addition to the ITP treatments at times. That's a balancing act in itself. Plus having been on Prednisone for over 20 years has it's own set of charming issues.
My hematologist is very progressive and open and collaborative. So I'll let you know what develops.
Thanks. Mary

as you can tell by the nasty reply you first got, posting any positive news about non patented supplements will get that type of response.

We've had a recent run of Spammers, Freck. Suspicions are high.

I appreciate your carefulness in checking out and evaluating new treatments. Thanks for the information. I will let you know what happens if I try the BCAA.

Hi Mary, Thanks for sharing your story. I like hearing about anything that could possibly work and will try anything thats not harmful.

Did your doctor tell you what BCAA might do for you? From what I've read its an amino acid that an athlete might take to preserve muscle mass. I don't really get the connection to ITP. Just curious if your hemo had an explanation. good luck!

I'm a little confused and curious about the phrase

"I'm not a candidate for any of the newer treatments, e.g., N-Plate, as my bone marrow is still making platelets (albeit big misshapen ones), and my immune system continues to destroy them. "

My understanding is that being a N-Plate candidate doe not depend on a lack of platelet production causing ITP. Indeed, I thought that most, if not all, N-Plate users probably fall into the category of "my bone marrow is still making platelets and my immune system continues to destroy them." To elaborate, I understand there is data suggesting that there may be a problem in platelet production in ITP, but this is not a pre-condition to be an N-Plate candidate.

Not sure about "big missshapen one". My understanding is that young (recently produced) platelets are big and so ITP patients tend to have younger platelets than non-patients.

Mark

freckles wrote: as you can tell by the nasty reply you first got, posting any positive news about non patented supplements will get that type of response.

So good to see you Freckles, positive and helpful as usual!

barnmary be sure to let us know how things go.

I agree with what Mark said about the use of Nplate. They used to think that ITP was just a problem with platelet destruction but now they know that most patients also have a problem with platelet production. They used to think that the bone marrow biopsy showed good production but they now know that they can't really tell. Nplate forces the body to make more platelets in the hope that the production of new platelets outruns the destruction and a count of round about 50 is maintained. It works for me.

Mark and Ann are correct:

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

It's the same for Promacta.
I produce platelets 'normally', I simply do not produce an abnormally large amount in order to keep ahead of the abnormal destruction process. Promacta increases platelet production to a point above the destruction level.
I am honestly amazed at what I hear some doctors say about ITP and it's treatments.