My ITP

[Jan2010]

I have ITP since 2009 and its a frustrating journey to say the least. My platelets do good for awhile and then bottom out like down to 30,000. I have a had a bone marrow biopsy three years ago and nothing was found all negative. And whenever I face surgery I have to be put on prednisone like I am now because I will be facing my second knee replacement surgery. I don't have much of an immune system and my Hematologist says I have some form of auto immune disease just don't know which one because there are many. So I'm reaching out to others because none of friends or family understand what I'm dealing with.

[Kyriak51]

HI my name is Georgia, I was diagnosed in early 1990’s. ITP is an autoimmune disease as is diabetes; what triggers the immune system to attack it’s self is the question. My nice developed hemolytic anemia shortly after a mild course of Roseola (viral infection) which destroyed her RBC’s. She recovered after 2years of steroids before she completely recovered. My son developed Juvenile Diabetes at age 24 after a serious bacterial infection and requires insulin injections five times a day. My ITP developed after the birth of my son by C/S and massive postoperative infection. Children who develop ITP do so after a viral or bacterial infection and generally respond well to treatment.

Your ITP response to prednisone to maintain your platelets around 30K, a low but adequate level unless you have an injury or scheduled surgery. You will require prednisone to increase your platelet count and avoid bleeding. At this point there is no cure for ITP, research is on going

[Kyriak51]

Hi 2010 this is Georgia checking in to see how your feeling. I my last post I gave three examples of autoimmune diseases, my niece with a complete cure and my son with chronic but manageable disease. However, I didn’t ask about your treatment regimen or side effects. I’m on weekly Nplate injections and blood draws since 2010. My only side effects associated to low platelets i.e. bruising, fatigue, extreme irritation, inability to think clearly and depression. My platelet baseline is 30-80K which is adequate to to live a fairly active, productive life. As you know bacterial /viral infection or increased stress or anger have a negative impact on the immune system which lowers your counts and increase the side effects.

Last Thursday my platelets droped from 46K to 10K, at this level I’m so irritated, emotional, frustrated, unable to think clearly and will cry uncontrollably at my inability to communicate in a socially acceptable manner. I then isolate my self in an attempt to protect friends and family from my bad behavior. Because we have no visible physical disabilities others don’t understand what we are dealing with. Rather than avoiding others, we should explain what an emotional and physical toll this disease exerts on the body.

Today my platelets increased to 68K, hemoglobin increased by one gram per deciliter from last week which would indicate I was bleeding more than I thought. I’m feeling much better now that I have enough hemoglobin to deliver oxygen to my brain. I received my Nplate and hopefully that will maintain my platelets at 50K .Be well

[dede7 in reply to Kyriak51]

I find for bruising pomegranate extract helps

[Kyriak51 in reply to dede7]

Hi dede7, you do know that bruising is BLEEDING and bleeding happens with low platelet counts; I love pomegranates but they will not stop the bleeding. When I have extensive bruising, my hemoglobin drops, decreasing the amount of oxygen delivered to all my tissues causing fatigue.

[dede7 in reply to Kyriak51]

Vitamin d helps fatigue

[Jan2010 in reply to dede7]

Thank you and I will try that after I have my knee replacement surgery. I can't have vitamins and such till after. I appreciate your help.

[Jan2010 in reply to Kyriak51]

My normal range without the prednisone is between 40-65,000. But because of knee replacement surgery I have to be on a big dose of prednisone. But your right people don't understand ITP and some doctors I have had to tell them then look it up. Some have even told me to get over it like my friends have. You can't get over this and for now there's no cure. I'm sure I've had this maybe even since 2000 when I got hit hard by two really bad upper respiratory infections from working at an Assisted Living facility. I read it can happen from that. I hope things are going better for you. I tested up when I read what your going through. Your not alone and I'm here for you if need some extra support. Your friend janis

[Kyriak51]

Thank you Janis, we ITP’s need to stick together

[Jan2010 in reply to Kyriak51]

We do! Its nice that I can find support now. It really helps.