What range is the Beta 2's and Cardiolipids do people have?

[JanetL]

I am just curious about numbers is all. Since reading all the posts and seeing different conditions, I was just wondering what role the numbers play in symptoms of APS whether it is Primary,(as I have), or secondary. Mine are very high. Beta 2's are 200, and my Cardiolipins are 120. I know it does take a toll on the body, but saying that, mental health is very important to keep everything in check.

[Tinythepanda]

Both my beta2 and cardiolipins are in the 500's. They've always been this high and never go down.

Warfarin and hydroxy have helped dampen down my symptoms but I still experience flares of fatigue, headaches and general wobblyness. Currently on week 7 of headache with the odd migraine thrown in. This is despite my INR being in range.

I'm unsure if there's any medical correlation between anti body levels and symptoms/clot risk. Many with low titres and seronegative also experience clots and horrid symptoms.

[JanetL in reply to Tinythepanda]

Thanks for the quick response. The last headache I had like that, they finally used lidocaine to numb the pain in the occipital nerve in the back, that is the only way they got rid of it, but that was years ago. I am on Topomax and it seems to be working. I used to wake up with headaches, and lived with them everyday, combined with migraines as well. The only way they can thin my blood is with aspirin as I have had 2 heart attacks and 3 strokes, and figured having three stents in my heart the warfarin would not be a wise choice.

[Manofmendip in reply to Tinythepanda]

Hi Gemma

Have you ever had a trial of Fragmin? As you know, I am on that for life now, instead of Warfarin. My headaches and general wobbliness have been much better on fragmin than they were on Warfarin.

Dave

[JanetL in reply to Manofmendip]

with the heart issues and internal bleeding, the doctors are at a loss at what to do with me, to be honest. my blood vessels break so easily. They have to be careful with drug interactions as my chemical make up is odd. Things react differently than in most people, for instance morphine keeps me awake for days, yet for most people it will make them tired and sleep. vasotec gives me horrible nightmares as well, which for a normal person, has no affect.

[Tinythepanda]

Hi Dave,

I was put in clexane initially for 3 weeks when I began warfarin until my INR was in range. In all fairness I'm much better than I was I just have the odd week of feeling rubbish and I'm currently stuck in a migraine/headache cycle. I must admit I felt great on the injections but was convinced it was a placebo effect.

Prior to my APS diagnosis I was also diagnosed with intracranial hypertension and wondering if it's raising its ugly head. I see my consultant in September so will discuss symptoms with her then.

[Fusch]

I am triple positive and my levels are

Anticardiopilin igg 258, img 42

Anti beta 2 igg 532+, igm 18

Plus LA +

[MaryF Administrator]

We are all so different with those numbers! MaryF

[JanetL]

it is interesting how one disorder can have such different debilitating affects with such different numbers. It is also interesting how many areas this affects in the body, and that it just doesnt affect one specific part. I really think it should be given more funding from governments to find out more about this and find some way of controlling the effects of it.