Immune Thrombocytopenia Purpura (ITP): What helps?

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?

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?

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.

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!

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.

My son has had many of them. They didn’t necessarily work for him, but there were other kids in the hemoc department that it worked really well for. So for the kids there’s an infusion room and they come in and put the IV in and then they just start running the IVIG I think he was playing battleship when it started lol and then he got what’s called the Rigers. He started to shake and feel really uncomfortable, nausea, headache, just really crappy and that only meant they needed to slow the infusion down, that it was going in too fast. Once they slowed down the infusion, it was much better. Other than that, and him not liking getting poked, the infusions were not horrible at all for him, they just didn’t work. Ultimately he had a spleen removed and that has kept him in a permanent remission for 30 years now.

This is a follow-up to my first post here about my 80 year old husband. He is in a "watchful waiting" stage for possible MDS (Myelodysplastic Syndrome) and continues to suffer with terrible itching from little bumps that erupt especially where there is some rubbing (e.g., elbows, backside and behind legs from rare periods of sitting watching TV or driving the car), etc. Every 3 months he has gotten a battery of tests from a hematologist/oncologist in a reputable cancer center (rated #24 in comparison to other US cancer centers).
Last week's blood tests revealed: Platelets normal but right at the borderline. His RBC, hemaglobin and hematocrit are slightly below normal and his RDW is high.
He also consults with a dermatologist (he's actually seen 4 dermatologists) and the latest one finally talked directly to the hematologist but we still have no answers about the itching --- other than continuing to apply steroid creams. The itching is the worst part in this watchful waiting. The dermatologist ordered an incredible number of blood and urine tests from the routine ones to hepatitis, rheumatoid arthritis, TB, etc. and all were negative.
In November, my husband will meet with the hematologist/oncologist who may give him direction on getting CAT scans for chest and abdomen. The hematologist/oncologist still does not see the need to get a bone marrow test yet. My husband will also meet with the last dermatologist to talk about the extensive tests he prescribed and possible next steps.
My husband remains very active politically and physically. He doesn't look or sound his 80 years but the itching is terrible.
One more thing: He has gone from being an avid pro-vaxer for Covid vaccines for himself and others to now questioning if he should get the next booster or not. All his problems started after getting his second Pfizer which may be a concidence or possibly not.
It would be helpful to hear from anyone in a similar situation while we count our blessings that my husband remains in a watchful waiting stage. I read all the posts about skin but I'd also welcome any advice about his itching/eczema that continues to drive him crazy.
Thank you!

Hi @emmalapp, results with IVIG may vary from patient to patient. As @donnasouthwick, the treatment didn't work for her son. According to this article https://www.pdsa.org/treatments/conventional/immunoglobulins.html
"IVIG temporarily increases the platelet count in about 80 percent of ITP patients.2 The duration of the response varies and the treatment can be repeated when the platelet count drops.

IVIg does not work very well for those ITP patients who have anti-GPIbalpha antibodies on their platelets."

You might be interested in this related discussion about IVIG and treatment as blood disorders
- Most effective way to administer IVIG
https://connect.mayoclinic.org/discussion/most-effective-way-to-administer-ivig/

Have you decided to try IVIG?

@et09, I'm glad that your platelets level is not a cause for concern. It sounds like you remained concerned however. How are you doing?

Thanks for contacting me. I am concerned about my platelets. Right now my platelets are only in the 50 range.

I was commenting on my lymphocytes. The Dr said my lymphocytes were not low enough to be a concern. He said that because I was concerned about them and asked him about it.