71% of CAPS patients & 9% of APS patients are hyperferritinemia (high blood iron)

[Tranquility1]

Fascinating. Low iron can cause blood clots. High iron can cause blood clots. It's a fine line.

Study from 2013 found that 71% of patients suffering from CAPS had high iron (compared to 0% in controls). The study also found that 9% of patients suffering from APS had high iron. lup.sagepub.com/content/ear...

This is so huge. 71% with CAPS compared to only 9% in APS. I would want to know about this study if I had CAPS.

Questions for anyone diagnosed with CAPS (Catastrophic APS):

1) Did your doctor tell you about the above study?

2) Did your doctor test you for ferritin (iron level in blood)?

3) What is your ferritin now and in the past? What was the normal range listed on those labs?

I don't know if it was the CAPS patients were taking too much iron or if their bodies absorbed more iron than necessary from their meals.

This reinforces the position that if you have APS and low ferritin and are taking iron pills, please make sure to have your ferritin level checked with a blood test at your physicals. The study went onto say "Among patients with APS, ferritin levels correlated with venous thrombosis, cardiac, neurological, and hematological manifestations and the presence of anti-CMV-IgM antibodies."

In the studies conclusion, "These associations allude to a pathogenic role of ferritin in the pathogenesis of APS, and the plausible role of ferritin as a marker of ensuing CAPS, although further studies are needed to elucidate these associations."

So these scientists say that those with APS and high ferritin should be on the look out for CAPS. Again -- that's huge. To keep it in perspective, 29% of those with CAPS were found not to have high ferritin.

[GinaD]

Maybe you just answered the query included in my post just now in response to a " no you don't hve APS after all" post. I was anemic at the time I was having all those TIAs/ mini strokes. The RBC counts returned to normal after I went gluten free 10 years ago.

Could that be why are he new hematologist wants to de-diagnose me?

[Tranquility1 in reply to GinaD]

I haven't tried gluten free yet, but the more I read the more I consider giving it a chance.

[Salty]

I heard this study presented at the APS meeting in Rio in 2013. Ferritin is an "acute phase reactant," and in such situations is really not a reflection of iron stores, but rather an acute inflammatory state.

[Tranquility1 in reply to Salty]

Very interesting. Thank you!