IVIG

Hi all,

My name is Jordan, and this past month I was admitted twice to my local hospital for low platelet counts. My first visit they were down around 10K and they diagnosed it as an autoimmune reaction to EBV (Mono), which was initially misdiagnosed as a bacterial infection, and prescribed amoxicillin (which itself has a negative reaction with EBV, and one I encountered). Initially they introduced me to an 80 mg injection of dexamethasone, and watched as my platelets rose to about 35K. They released me on a tapered dose of prednisone. After finishing the course my platelets dropped again, this time to 4K. They decided against a transfusion as I wasn't showing signs of bleeding (just some small bruises). The administered dexamethasone once again raising my platelets to around 70K. Now I am on 75 mg dose of prednisone a day, but my CBC's have show a slow drop in platelets over the past two weeks. They are currently around 43K. They still think its being caused by EBV, but they're not ruling out ITP.

One question I have is whether or not there is any additional ways for me to suppress my immune system to keep my anti-platelet antibodies down?

Second question is, is that they are discussing starting a IVIG treatment, and was wondering if anyone has any experience with it? What its effectiveness is, what are the side effects, and how long do the treatments take?

Thank you all for your time.

Cheers,

Jordan Petrosky

Jordan:

ITP is often treated with immunosuppressants. Those can include steroids such as Prednisone and Decadron, and can go further into harsher meds like Rituxan, Imuran and CellCept. Other than the meds, there is no way to suppress the immune system.

IVIG is not an immunosuppressant and gives a temporary boost at most. It usually lasts one or two weeks and is not an ideal treatment for ITP since it takes so long to infuse and does not last. Side effects can include aseptic meningitis which resolves after a few days. It's good in a pinch if you need surgery or something, or if nothing else work.

Hi Sandi,

Thanks for the reply. In my understanding the IVIG treatment is more of a immune system modulator acting to suppress some idiotypic antibodies, through the use of immunoglobulin molecules, which are essentially antibodies that fight our antibodies, while also suppressing key B-cells, and macrophages. I'm really more or less concerned because my doctors haven't identified the exact antigen binding site causing the destruction of my platelets, so they really don't know for certain if the immunoglobulins will be effective.

Hi Jordan

I was diagnosed with itp in feb of last year. My count was 2k when admitted to ICU. I received platelet transfusions and IVig. I finished the IVig treatments 2 days before I was released with a count of 100k so it did seem to do the trick at the time. However 2 days later I was back in ICU for a reaction to the IVig. I ended up with aseptic meningitis and hemolytic anemia. That was the start of my 4 month stay in ICU. FYI that reaction to IVig has only happened two other times from what my doctor and I could find while researching it. Not trying to scare you away from IVig but while researching it you may not find some of the side effects since they are rare.
Good luck with everything!

Andrea

Jordan:

No one ever knows if a drug will work until they actually try it. Identifying the antigen binding site isn't part of the process. No one gets that technical. Some people have anti-platelet antibody tests done (I did), but it really doesn't tell you much and does not help to predict what treatments will or will not work. Maybe someday the treatment for ITP will be that advanced, but it's not there yet. IVIG isn't generally considered to be an immunosuppressant; it is made up of antibodies that act as a diversion from platelet destruction.

Here are two articles about IVIG but I suspect you have already done some homework.

www.itpsupport.org.uk/american/16.%20IVIG.pdf

www.apsfa.org/docs/APS-ivig2.pdf

Thank you Andrea. I'm sorry to hear you had to a negative reaction to your treatment, that's some scary stuff, and I hope all is well. I'll definitely have some questions for my hematologist.

And thank you again Sandi. Those articles are certainly more comprehensible than anything I have found, and I know my family will be more comfortable after reading them, just as I am.

Here are two great sources of information. The first is a video presentation by one of the top ITP specialists. It is fairly recent.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

For information about ITP, this is the most credible source if you find recent articles:

www.bloodjournal.org

A very informative presentation. The thrombopoietin agonists certainly sound like something to look into. 80% effectiveness in patients before a splenectomy, is amazing. Once again, thanks for the help Sandi.

Cheers,

Jordan

Hey, I am a 14 year old girl from Australia and I was diagnosed with chronic ITP but am now fortunately in remission!
I had IVIG and it did boost my platelets up for a bit but then they just dropped again. I had 3 infusions of that and my platelet count was still not sustainable. I didn't have any side effects to it though thankfully! Even though it didn't work for me it's worth a shot, everyone's different!

I hope this helped!

I had IVIG almost 3 years ago when my platelets would hover between 1-4. They stayed that way for almost two weeks. My hemo did the IVIG over a 24-hour period on my last IVIG (after doing around 3-4) and that seemed to help me out and got me out of the hospital. After that, I did the Decadron pulses for a couple of months.

So far, have stayed in remission.

Dee Dee