Autoantibody tests

I am going for a second opinion next week with Dr. David Kuter in Boston. I searched him out in my frustration with my current hemo. In this last go-round of ITP over the last year, I have been through three hemos. Other than the standard CBC w/differential none has offered me any other test. I was tested for auto-antibodies maybe 21 years ago, but was told I had none. I have to believe they have made some improvements to those tests by now. I have asked every hemo if there are antibody tests and have always been told no. I know this is not true! Apparently they think they are of no value.

I have started to compile a spreadsheet with questions/therapies for my appointment coming up. My experience with my initial diagnosis of ITP at 16 was a nightmare. I had an awful hemo who overdosed me with drugs, had no level of compassion and dismissed virtually every side effect as "in my head." I called him Doctor Doom. I am not willing to do anything else without at least a thorough examination of all my options including testing, treatments, side effects, etc. Also, since I have no spleen, I understand that there are certain therapies that are not an option in splenectomized patients.

MY QUESTION: What specific tests are available for detecting auto-antibodies? What does anyone know about Immunoglobulin testing or general immune tests? Sandi, Hal, Rob? Can someone please weigh in?

Before I relapsed last year, I had something going on with my back/ribs. Honestly, I think I had chostochrondritis based on my symptoms, but because it was more to the back, than the front, the doctor dismissed it as general back pain. I was miserable. My primary doctor did a panel of tests and my hs-crp was extremely high. At the time, my platelets were normal. I do not have high cholesterol and the doctor didn't seem concerned. Then I went through a period of the worst stress of my life..triggering event? I think so.

Anyway, I seem to see a pattern that when my platelets drop below 50K, I have knee, ankle and wrist pain with a generalized weakness and fatigue and petechiae. Other than that, I have been suffering with awful heartburn and acid reflux for the last couple of years. I finally talked the hemo into testing me for H-Pylori. For so long, my complaints have been dismissed, I've been told "just take Prilosec/Zantac," "It has no bearing on ITP," "It's probably the Prednisone." When it got worse, I was told to just double the dose. My first test came back unequivocal, but the re-test just came back positive. I am not saying it is the root cause, just hopeful and at the least would love some relief. Other than testing iron levels, the doctor has done nothing. I respond well to Prednisone, but she tapers me off so fast, my count has dropped every time I get to 10mg and below and then the cycle started all over again. She doesn't listen to me.

Any suggestions?

Thanks,

Erin

Erin:
There are definitely tests for autoantibodies, but at this point in time, they do not tell much as far as treatments go. The researchers are still working on how treatments can be tailored according to the antibodies that are present. There have been additional antibodies discovered since you last were tested. Many doctors do not feel that testing is necessary because there isn't much they can do with the information once they have it. Progress is being made, but it's slow. However, Dr. Kuter is one of the specialists, so he just might be a bit more interested than a regular rural doctor.

Getting tested for H. Pylori is a good idea. It should be treated if positive. Usually, it doesn't do much for ITP when treated but there is always a chance.

I have had reflux for more than 20 years and it's been really bad at times. I have found that diet change has done more than any medication I've ever taken. I've been able to stop taking proton pump inhibitors completely.

Your other symptoms do not seem to be ITP related. Have you ever seen a Rheumatologist? All of those symptoms are Prednisone related, but if you have them when you are not on steroids then something else is going on. A Hematologist will only focus on blood related disorders and most do not perform additional tests other than a CBC. I did see a specialist once though who took 18 vials of blood. I'm not sure what she tested for but at the time, everything was normal.

As far as treatments after splenectomy, the only one that is out is Win-Rho. You can still use Rituxan, N-Plate and Promacta but the risks go up once a patient is asplenic. Here is a video that discusses that: www.onclive.com/insights-archive/immune-thrombocytopenia/risk-of-thrombosis-in-patients-with-itp

Erin,

You mentioned a highly elevated CRP (c-reactive protein) level.
It is very important that you get this number down as low as possible.
In case you missed it, check out this thread:

pdsa.org/discussion-group/7-treatment-general/29667-lack-of-platelet-autoantibodies-and-non-responsiveness-to-rituxan.html#59445

In brief, high CRP levels aggravate ITP, in addition to a variety of other inflammatory responses including arthritis and cardiovascular disease.
Diet, exercise, and statins all help to lower CRP