New here ITP since 2012

I was diagnosed with ITP in March 2012, after a 2-month long stay in the hospital fall of 2011. With about 26 blood transfusions.

My first time in the ER for a weird "rash" of red dots all over my body. My platelets were at 6. So my very first round of prednisone began. They don't call them Satan's tic-tacs for nothing.

Ever since then I've had flare after flare. I've spent the majority of the last year at critical levels. Prednisone will bring them up only for them to drop right after. I've been told it can drop from illness and even stress; though I never remember being sick aside from one time.

Last month I could tell they were low, I made an appointment with the hematologist, I told her I can't do the prednisone for the rest of my life, there has to be something else to try. It is literally driving me insane. I'm very sensitive to the mental side-effects. They set me up for my first ever round of IViG.

When I went in the following day my platelets had dropped from 29 to 0. With my nose bleeding along with my gums in the office they didn't feel comfortable giving me the treatment as out-patient. I was admitted and had 4 rounds in-patient along with steroids. The first night was extremely painful I felt like my bones were on fire. (I'm not sure if that was normal)

It's been exactly a month since then, I am seeing petechiae and gums are slightly bleeding again. I'm also fatigued and can feel the familiar tiredness behind my eyes and loss of appetite. I'll be having a CBC done on Monday to check my count.

I'm wondering if anyone here has experience with the IViG treatment. I had been told some don't need any more rounds, some can do every three months or every month.

I'm sorry for the long post, I'm new here and wanted to give some background. Plus, I don't know anyone else with this disorder. Most people just look at me as though I've just told them I have a cold; it's nice to tell my story to those who understand.

Welcome to the forum. I am sure many will respond but it can be prety quiet on the weekends. There are many treatments available that can be used. IVIG is usually a very short term solution. It helped me for two days and then my platelets dropped again. The prednisone is awful and also a short term solution. As you search the site you can see the experiences of others. I was diagnosed last January. Some common treatments are: rituxan, NPlate and Promacta. I am on promacta which is a pill. My platelets have been as low as 2000. I have not had any side effects. I started at 50 mg a day and my platelets started going up four days later. I am now down to 12.5 mg twice a week.
On the main page of the website there is a section on treatments. I do not understand why you have only had prednisone when you have had such terrible symptoms.
Good luck in getting a more appropriate treatment.

I agree with all that Emily said. Have you been on prednisone the entire 4 years you have had ITP? without trying other treatments? That makes me question whether you have the right doctor. 26 blood transfusions?!?! I am guessing they were platelet transfusions, which should only be given if dangerous bleeding occurs, not just for low platelets and petechiae. Transfused platelets are quickly destroyed by your heightened immune response, and can further sensitize your immune system against platelets. Were you experiencing dangerous blood loss?

IVIG is always a temporary treatment, to recover from very low platelets. If someone has acute ITP - a temporary drop in platelets due to an illness or a medication, then IVIG may be enough. Otherwise, it is only temporary. My wife is the one with ITP, and she had a strong reaction to IVIG... a headache and neckache that mimicked meningitis - actually called drug-induced meningitis. I have never heard of the "bones on fire" kind of pain, but maybe others have.

Ellen (my wife) was treated with Rituxan August 2014 and although her counts are below normal, they have been high enough that she hasn't needed any treatment at all.

ITP is fairly rare, and most hematologists are not as knowledgeable as they should be, as most of their experience is with various cancers. You might want to start looking for another hematologist.

Many on this website have taken control of their treatment by becoming highly knowledgeable themselves. Collectively, there is a lot of knowledge here, so you would do well to spend some time and become an expert yourself.

Hi,
I've had Itp since 2003 I'm 30 now. I use ivig as my emergency drug because it only lasts about a week and the more I got it the less potent it was. I had ivig 3 times a week when I was pregnant. Ive been on and off nplate through the years. Nplate is my best friend and worst enemy I actually had a stroke when I was 25 due to too much nplate so you need to be closely monitored. Everyone is different but I think nplate or promacta is a more "stable" medication in the sense that promacta is a pill and nplate is a shot a week so it's not that time consuming. Good luck!

So sorry. I wasn't clear on the transfusion portion. I had actual blood transfusions because of a vein puncture during a surgery that had bled out and wouldn't stop bleeding for days.

I have transfusion induced ITP. That was my trigger. I never had it before those transfusions.

Thank you all so much for all the information so far. I have an appointment with my primary care on Friday and will be speaking with her on finding a new hematologist.

I turn 35 in July and my kiddos are very active. I need to be able to keep up without being the emotional wreck medication leaves me!

I know quite a lot about ITP the reasons, symptoms, functional logistics. I came here for possible alternative treatments; it looks like I came to the right place! I'll for sure be poking around!!

The problem with ITP symptoms is you can have a drop in count and show no red dots or blood blister or anything. That happened to me in 2002 (diagnosed in 1989) - I had a "feeling" and I was right. As is said, the only thing certain about ITP is there is nothing certain.

Here is the treatment page - have you seen it? It mentions conventional as well as complementary treatments
pdsa.org/treatments.html

Susan:

You definitely need a new doctor. There are other options to try. None of us would want to tolerate Prednisone over and over. Most of us have used it at first and then maybe did a second round, but not as the only treatment. Too many short term and long term side effects.

Post transfusion purpura is usually a temporary reaction to transfusions and counts will go up as the antibodies die off. It shouldn't cause chronic ITP.

Read about the treatments, become familiar with them, and find yourself a new Hematologist.