Does anyone have any ideas how to help ITP?

[cino]

Now i hope this is the name of the disease above, as I only know it as ITP.  I am new to this, and want to thank PlateletGal for her welcome. I will have to figure out a way to answer her message to me on a personal level and not in a forum, but thankyou. I myself do not have ITP (the blood disorder where your platelets go very low and you can bleed to death, and where your spleen is eating up your platelets and you cannot fight infections, etc)....whew, that was long.  Anyway i do have some other help problems like fribromyalgia which I have talked about on that blog. However,my daughter has ITP and is in a very serious state. She has been diagnosed with it about 2 yrs ago. She had been on many doses of Prednisone, and that did bring her platelets up to about 80 - 100, but then after she is off the Prednisone, they drop again. I am an American living in Australia, and I understand that some of the blood counts come out a bit different over here, so if tell you 80, it may really mean 80,000 over there...im not sure about that. Anyway, her paltelets drop as low as 12 and when they were under 20, the doctor wanted to give her blood transfusions and blood platelet transfusions, but decided to just put her on the prednisone. She has tried various natural treatments to boost her platelets with no success. Her specialist wanted to try her on some low chemotherapy type treatment with intravenus drugs, and also some new injections, but the side effects of the drugs are not good and could cause her to be more susceptible to cancers. Now, as a LAST resort, she is going to have her spleen out. I am not happy about this. The specialist does not know the underlining cause of this illness, but is sure something has just triggered it in her. She is 32 yrs old and has 2 children. She has already been immunized for everything that they can immunize her in preparation for taking out her splee. She has had the blood tests that I read about that Dr. Garth Nicholson has suggested and there is no viral or bacterial infection. She has been on antibiotics and Prednison, but no avail. She has tried spirulina, chlorella and other natural treatments for blood disorders, with no avail. Is there anything that anyone knows about that can help ITP and raise the platelets?  The specialist said that her bone marrow is healthy and producing platelets, but the spleen is over active and eating them up. I would like to try to find anything for her to give a go, before she has surgery, which will be in a couple of weeks. Thanks.

[PlateletGal]

Which surgery is your daughter having ? Are they don't a splenectomy ? Has your daughter tried immunoglobulin therapy or plasmapheresis ?

[snuffle]

Shortly after the birth of my second child, I came down with TTP. It was misdiagnosed at first as ITP and the treatment was IVIG, intravenous immunoglobulin treatment. It would be worth checking into before her surgery. Plasmaphoresis is the treatment that worked for me. This is where your daughter's blood would be removed, the plasma separated from the RBC's , donor plasma mixed with her cells, and the new mix returned to her. The idea, as I understand it, is to remove the antibodies that she's making from her system, and replace them with others that will not target her platelets. This is not as horrible as it sounds, but it does take more than 1 treatment. Either one of these is less invasive than surgery, but both are expensive. Good lock to you both. Please keep us posted.

[cino]

Thanks for your information, It is a coincidence that my daughter came down with ITP after the birth of her second child as well, and the Specialist told her that the pregnancy is probably what triggered it, as some women respond to the fetus as a "forgeign body" to their systems, and their bodies reject it...thus their immune ystem goes all haywire. She was going to have the IVIG, but the doctor advised her against it, as he told her the side effects of that was for her to be more susceptible to getting cancer, especially leukaemia.  The other treatment was a brand new injection, not even 5 yrs old yet, and he said they have great success giving this to leukaemia patients to increase the platelets, but once again, the side affect is weakening you and making you even more susceptible to leaukaemia. Doesn' t make sense does it?  I will check with my daughter and tell her to ask her doctor about Plasmaphoresis treatment. She is seeing a Consultant Haemotologist over here in Australia, which is one of the highest types of doctors.  She has not seen a Rheumatologist though, have you? Thanks for you help, appreciate it.

[cino]

Hi. I forgot about this site until I got an email. My daughter has been on a trial of a new drug called "NPlate".  We live in Australia.  The drug was tried in USA for years and yes, one of the side affects was leukaemia. However, this doctor that put her on it has travelled around the world and he is the one who does the trials. He told her that they have now "separated" the drug, and the part that causes leukaemia is no longer in the drug and it will not affect her red or white blood cells. She was one of 18 people in all of Australia who was on this trial. She was the worse out of the 18, but had the best results. They made a DVD of her telling her story and promoting this medication to be seen all over the world. The medication is called NPlate.  It is working like a miracle, thank God. She has been on this drug for about 2 or 3 years now, and her platelets are better than mine. However, the one thing they need to test her for every month is her iron. If her iron goes extremely low, then she can get a very rare type of leukaemia that is life threatening within days.  However, if she keeps her iron up, there is no problem. When her iron goes low, she just goes on an iron tablet and it comes up again. She did not need to have her spleen out, however after the trial was finished and the drug was approved in Australia, anyone else who needs to go on this drug must first have their spleen removed.  They must first go on Prednisone, then have their spleen removed, and then they can go on this medication.  We are always praying and always hoping that God will help her stay well and her platelets and iron will always be stable, and so far she is doing well.  She needs to give herself an injection every week for the rest of her life.  Because she was on the trial, the government allowed all 18 people on the trial to have the drug for free, and it they ever have to pay for it, it is only $35.  However, the cost is $1,000 an injection, and to have an injection the every week the rest of your life, well who can afford that?  They are working on the government subsidising this for people who really need it. Thank God, my daughter is getting this for free.  I sincerely hope you can find some treatment for your daughter. Let's just keep praying.  All the best. Cino

[cino]

Hi. I thought I was replying to your comment, but it seems I was replying to myself haha.  Please have a look at the comment I just wrote today about my daughter being on the drug called "NPlate".  Thanks.  cino