clotting disorder and Promacta?

Wondering if anyone has knowlege/experience with ITP, TPOs and clotting disorders?
Sandi, I know there are links somewhere to articles on clotting disorders but I can't seem to find what I'm looking for. Honestly I'm not even sure what I'm looking for! I guess I'm wondering if TPOs could cause clotting at numbers around 100K. Or if it is the combination of clotting disorder and TPO that can cause a problem? I'm still trying to understand what happened to me in 2011 on Promacta. I'm taking it again, so again trying to put the pieces together. heres my update:

I'm on Promacta 25mg. I quit taking it in 2011 because I was having symptoms of possible artherosclerosis in my legs. Esp. my left leg looked white like porcelin with shiny skin, loss of leg hair etc. I stopped Promacta immediately and my legs went back to normal within 24-48hrs.

I saw my hemo soon after but since they hadn't seen the legs or done tests, they couldn't really say what happened. They thought perhaps I had pre-existing artherosclerosis and the Promacta made it worse. They thought it sounded like "vascular ischemia" and suggested that I see a vascular surgeon.

I saw a vascular surgeon who ran tests and said my arteries were "perfect"- that was good news! So I don't have a pre-existing condition, but I wonder what happened?? Hemo and surgeon didn't say much, just that if it happens again they can check it out.

Anyway, I'm wondering now if I have a clotting disorder.? My counts were over 100K when my leg turned white. Thats not high but maybe for me on Promacta it is?

I still have my spleen and have not been tested for APS. How do people find out if they have a clotting disorder along with ITP? Any info, personal experiences or articles would be great!
thanks- p

Posey:

People can have clots even with low counts and no detectable clotting disorders or obvious reasons. That is rare though and usually some reason is found. The dose of a TPO should be adjusted to keep a person around 50k, and especially so if they are on birth control, have had a splenectomy, or have APS antibodies.

Unfortunately, people usually do not find out that they have a clotting disorder until they actually have a clot. Many doctors do not routinely test for APS antibodies, probably because it is not currently recommended in protocol. I really wish it would be routine since ITP can be a thrombic disorder, and it's estimated that about 1/3 of ITP patients have APS antibodies. They keep coming out with articles that splenectomy alone can cause thrombic complications, yet they place these patients on TPO's and adjust the dose so the patient maintains normal platelet levels.

Another thing that I have not mentioned are platelet microparticles. Many ITP patients have tiny platelet fragments that can also cause clots or thrombic episodes.


Platelets release microparticles (PMP) upon activation. Elevated levels of PMP were observed in patients with immune thrombocytopenic purpura (ITP), sometimes associated with a syndrome resembling transient ischemic attack (TIA), suggesting a thrombogenic potential for PMP. To determine if this association applies to TIA and other cerebrovascular accidents (CVA) without ITP, we studied PMP profiles in 71 patients with ischemic CVA: 28 with small vessel CVA (SCVA), either lacunar infarcts or TIA; 24 with large vessel CVA (LCVA); 19 with multiinfarct dementia (MID); 12 with Alzheimer's dementia (AD); and 31 healthy controls. The mean PMP values were: MID = 3.71 +/- 0.51; SCVA = 3.48 +/- 0.63; LCVA = 1.97 +/- 0.28; AD = 1.19 +/- 0.27; controls = 0.88 +/- 0.09, (all units x 10(7)/mL). PMP values in all groups except AD were significantly above normal (p < 0.01). However, the elevation in SCVA was more marked than in LCVA (p < 0.01). Administration of the calcium channel blocker, nifedipine, to 11 TIA patients reduced PMP significantly.

www.ncbi.nlm.nih.gov/pubmed/8303669

If it happens again, you need to see your doctor right away so they can properly assess you and find out what is going on. Ask to be tested for APS antibodies, but keep in mind that they come and go so you may not 'catch' it at the time of testing.

Over the Thanksgiving break, I realized that many people in my family have had clotting disorders. Basically everyone on my dad's side has had them in their legs over the age of 70. My great grandmother died of a stroke. Do you think they may have had the anti-body that I possibly have that is common in ITP? Im still in the how did I get this disorder phase.

It's possible, but if your relatives were all over 70, it was probably age related for them. The older you get, the greater the chance of heart attacks and strokes. A stroke in a young person is usually questionable, but not in the elderly.

How you got the disorder? Sometimes that is hard to grasp. I just accepted the fact that somehow, between both of my parents, I was passed some bummer genes that gave me a predisposition to autoimmune disorders. I had that predisposition since birth and something came along and triggered it. For me, I think it was a snowball affect of stress, a bad cold, and possibly the echinacea that I took sporadically. Some combinations are a recipe for disaster and we have no way of knowing that or avoiding it. It just happens. Erica once said that as complex as the human body is, it's amazing when things go right. So true. When you take a look at all of the things that can go wrong with the body and all of the people who have devastating illnesses, you realize that no one is immune to it.