Immune Thrombocytopenia Purpura (ITP): What helps?

Hi, I’m Donna. My son was also a patient who didn’t respond to IVIG infusions; the most we ever got was about a week, then back we’d go. He got ITP at 12, spent the better part of a year in the ped’s hemoc dept. After a year they finally removed his spleen. He was on prophylactic antibiotics for several years, and then one day just said he didn’t want to do that any more. That was 30 years ago, he was also a very odd case, but all this time later, he is a happy, healthy, guy with other issues (we both have EDS, as did my mom, gram, and great gram), but the ITP has been considered “in remission” permanently.

Doctors told me to stop all supplements! Only taking D3.
I started drinking 3 tablespoons of organic beet juice not from concentrate. It’s supposed to help platelet count. Papaya is supposed to be good for platelets but in my reading I got mixed info on bringing platelets up and also bringing them down! I am just trying the beets right now!

My Lymphocytes are lower but not low enough for concern. Right now they have gone up from in the 2 range to 4 which, according to my lab, is just below low est normal. I was wondering why my Lymphocytes were staying below normal and all my Dr says is they are not at critical point.

Has anyone tried the IVIG treatment? My doctors are considering that for me, but I am just not sure what to expect in terms of side effects and results? Also, how long does the infusion usually take?

After discovering that my blood platelets were too low for surgery, I was referred to a hematologist who ordered a bone marrow biopsy to confirm ITP. In addition, it was found that I also have Cold Agglutin Disease and MGUS. Various treatments were tried for the ITP and Nplate was found to work best. Over 4 years my platelet count went from 9 to over 200 and has remained in the 150 to 170 ranged. Before every Nplate infusion I have blood draw for a CBC and a Citrate count. The Citrate count is used because the CBC tube can cause my platelets to clump and result in a lower or 0 count. Over the last year of CBC draws I have noticed that the Lymphocyte Automated component has been lower than the standard range. Of the 22 CBC's this past year 18 have indicated a low Lymphocyte Automated component. The previous year I had 35 CBC's and of those only 5 had a low Lymphocyte Automated component. I've been told that ITP, CAD and MGUS are autoimmune conditions. I'm wondering if the 85% of CBC's with low lymphocytes this past year, compared with only 5% of the previous year, could be an indication that my immune system is now targeting this component of the CBC. My hematologist has never addressed this issue with me and am wondering if this issue is not significant or am I overly concerned. Anyone with autoimmune blood conditions seeing similar lymphocyte automated results?

Hi Lori
This is very helpful thank you.
Best wishes
Apb

Hi @apb. TTP and ITP are both blood disorders in which there can be potential clotting issues. But they are not the same disease as there are differences between them.
I found two good articles which will help to explain the difference between them.

Thrombotic thrombocytopenic purpura (TTP) is a rare disorder that affects your blood’s tendency to clot. In this disease, tiny clots form throughout your body
https://www.healthline.com/health/thrombotic-thrombocytopenic-purpura
~~~~
ITP, or immune thrombocytopenia, is a blood clotting disorder due to a low amount of platelets
https://www.healthline.com/health/idiopathic-thrombocytopenic-purpura-itp
I hope this is helpful for you.

Is TTP the same as ITP please?

My latest lab results showed that my Adams 13 had droped and may have to start Rituxan. 8 rounds of Rixtuxan usually helps my numbers stabilized for at least a year. I usually can tell when my Adams 13 drop, I get really fatigued, and loose motivations, like cooking, reading and sometimes TV! Just know, your not alone on this journey. This is a great support group, that gathers people with Ttp.

I was diagnosed in 2017. What helps me most with living with TTp is to find a support group or family members to discuss fears, treatments, labs results and day to day conversations to ease the unknowing. I juice, eat plenty of vegetables and fruits. I also take multivitamins, iron, Omega 3 fish oil and eat plenty of salmon and chicken. Will occasionally eat a steak for the iron. I also walk and exercise and lastly, I pray for complete healing. TTP is a rare blood disorder and you have to help your blood to stay as healthy as possible.

It can be scary….but your not alone.