Misery and Mirth

More Not So Great News

I have been feeling very crappy this week; the joint pains are back, asthma/allergies, swollen ankle & foot, still having migrianes. I feel very tired, & run down. I haven’t been able to sleep through a whole night, either because I have to get up and pee every 3-5 hours or I just keep waking up. The prednisone is affecting my blood sugar and serotonin so bad that I’ve gained 8 pounds in the last 2 weeks. That might not see like much but to an already obese women every pound added is a major concern. I’ve been starting to have this “discomfort” and occasional stabbing pain in my left chest that is worrying me. I keep feeling like crying, I feel so frustrated and overwhelmed but if I let myself cry I do it alone because I don’t want to upset my family. But maybe I need to be more emotional and hysterical when I see the doctors. Today I received a copy of Dr.Winegarden’s evaluation letter of me from my initial visit on April 26th, it starts “In general she is an obese female in no apparent distress” Of course I’m $#%@&*! Distressed, but I didn’t think being over emotional was going to help my diagnosis, even when I’m in severe PAIN, people close to me will vouch that I laugh and make jokes. I guess nice people do come in last. It really Pisses me off that because I am pleasant my condition is deemed less severe.

Ok, So I saw Dr.Winegarden, my hematologist today.  They are going to continue to wean me off Prednisone over the next few months and my platelets are going to continue to fall. When I get close to critical again, he will try intravenous treatments, but since they cost so much and I don’t have medical coverage for them he is doing a wait and see thing, hoping i get coverage soon.

The 3 choices he mentioned:

IVIg: This is an intravenous infusion of immunoglobulin, a type of antibody.  The antibodies attach to the receptors in the spleen, sparing the removal of antibody coated platelets. This

treatment is a temporary measure and is not expected to result in a sustained elevated platelet count

, although in some rare cases this does happen. The side effects include allergic reactions and heart palpitations.
  Usually a dose of 2 grams per kilogram is divided into five doses and 400mg/kg is infused daily for 5 days. (For the first time only) Some patient can tolerate consecutive days. It is recommended that young women take this on alternate days. This is followed by a monthly infusion of 400mg/kg. It takes about an hour each time to get the infusion,

And a single infusion costs about $3000 for an adult!! That’s $48,000 a year, if it even works!!!

WinRho: is a purified human immunoglobulin used to treat immune thrombocytopenic purpura or ITP. It is given by a 3-5 minute infusion into a vein. Anti-D may help raise the platelet level for about one month after each infusion. Some studies have shown Anti-D to raise the platelet level for about 90 days. Periodic infusions of Anti-D may allow patients to achieve stable platelet counts, and is cheaper than IVIg about half the cost.                      However, because WinRho SDF antibodies and action are so specific, it is only effective for people who are Rh positive (85% of population) and have a spleen.  It may not be suitable for some pregnant women.

http://www.winrho.com/animation/index.html  This is a nifty little animation that explains ITP and how WinRho works. 

Rituxan: This is a monoclonal antibody approved by the FDA to treat lymphoma. There has been some initial success in its use to treat ITP.
Rituxan reduces the number of B cells in your body. B cells are a type of white blood cell that, when activated, multiply and produce antibodies. Since Rituxan reduces the number of B cells it reduces the number of cells that produce antibodies including the antibodies that attack platelets.
Rituxan reduces the general population of all B cells with a CD20 receptor. It could take up to a year for someone to replace those B cells and have their immune system and antibody production (including the helpful antibodies) back in working order.
The manufacturers of Rituxan which is known chemically as rituximab are IDEC Pharmaceuticals and Genentech Inc.

They say that a course of four weekly transfusions, each about an hour long will cost about $9,000 and could last up to a year.

Also because I tested positive for Lupus Anticoagulant, Dr.Winegarden tested me for Anti-Cardiolipin Antibody which I was also positive. This is indicative of Antiphospholipid Antibody Syndrome, but since I don’t have a history of blood clots and/or thrombosis Dr.Winegarden said he will monitor this condition but not treat it until my ITP is under control or I develop problems with blood clots & thrombosis.

Antiphospholipid Antibody Syndrome is a very rare blood disorder characterized by recurring blood clots. In the Antiphospholipid antibody syndrome, the body recognizes phospholipids, (part of a cell’s membrane), as foreign and produces antibodies against them. In young women, it may be associated with spontaneous abortions for no apparent reason.

Up to one in four people with idiopathic thrombocytopenic purpura have antiphospholipid antibodies. Over time, many of these people develop APS. People with idiopathic thrombocytopenic purpura and APS may form blood clots or develop bleeding problems, including life-threatening severe bleeding. Also, red blood cells can break down abnormally; causing fatigue, dizziness and pale skin, but this is more common in people with lupus.

Ohh Joy , on one end I can bleed to death on the other I have to worry about clotting and strokes. I really am a %$#@*^$ up mix of YIN and YANG. 

 

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