Question about diagnostic criteria.

[staplegunsarefun]

Following repeated pregnancy losses, I had an indeterminate result on an Antiphospholipid Syndrome Assessment (all normal except ACL IgM = 13, cut off for normal is 12). My understanding is that results below the 95 percentile are negative, above the 99th are "positive / high." Results between the 95th-99th fall in this "indeterminate range" and require retesting.

I was retested. This time ACL IgM was normal, but the aPTT and hexagonal phase phospholipid (other metrics on the assessment) were abnormal. The aPTT = 41.2, ref interval 23.4-36.4, and hexagonal phase phospholipid = 12.7, ref interval 0 - 8). This was a "definitive positive" (not just indeterminate like the last one). But (of course) I would need two positive results 12 weeks apart for a diagnosis. The initial indeterminate result doesn't count towards that. We are retesting to see if results are persistently abnormal - but can't do that for 10 more weeks.

The Assessment guidelines say that only *persistent* lupus anticoagulants or APL antibodies are associated with increased risk. Does the same factor need to be positive twice, or does the panel need to come back with positive results (but not necessarily the same factor twice)? In other words, do I need two times with positive lupus anticoagulant, or does one time with positive APL antibodies and one time with lupus anticoagulant count?

(on an unrelated note, I have had borderline autoimmune results for years. My ANA was positive a while back and they thought it was potentially lupus, but then it was negative again. I have persistent joint pain, and a facial rash may be rosecea or malar rash, but hasn't responded to metrogel treatment for rosecea. i have an appointment with a rheumatologist, but it isn't until August, at which point they will probably run more tests, but I'm guessing won't figure out what is going on with that).

[Manofmendip]

Hello and welcome.

Please have a look at our charity's website:

hughes-syndrome.org

and in particular:

hughes-syndrome.org/about-h...

Please also have a look at the pinned post on the right of this page on Seronegative Hughes Syndrome.

I'm sure that others will reply to you soon, too.

Best wishes.

Dave

[staplegunsarefun]

Thanks so much for the reply. On one level, I definitely agree with you that the symptoms *should* be interpreted in context and I agree that meeting the research criteria isn't necessarily important. However in practice I have found clinicians much easier to work with if one "fits" the criteria. I'm sick of being told to take tylenol and anti-depressants to treat the "symptoms" without addressing the underlying cause because I don't "fit." So I was kind of hoping that I would fit.

I'm sick of feeling like people won't take my legitimate health concerns and symptoms seriously. And I was hoping now that the bloodwork showed a more specific pattern, I would fit some sort of "criteria" and would get better care. I'm in the USA, so the specialists listed on the site aren't helpful. My reproductive endocrinologist is on the equivalent USA list, but there are no rheumatologists on the list within 300 miles

Again, thank you for responding. I really appreciate it!

[fbenny]

I had IVF for both my pregnancies (7 years apart). During my first lot of treatment for unexplained infertility I was tested but it was negative. My trouble was getting pregnant at all. My son stopped growing around 7 months, the placenta was old and clotted (despite being 39 weeks) and I had very little amniotic (my waters broke and I didn't notice). He is lucky to be here. After giving birth I had a very low palette count, severe fatigue, extreme night sweats and post natal depression. I wasn't actually diagnosed until the second time round with two positive tests, my own doctor only refereed me to the Lupus clinic as my IVF clinic insisted so I could continue with the IVF. She said that the levels were only slightly raised, as Dr Khamashta told me at the first appointment there is no such thing a slightly. Dr Khamashta took down my full history and diagnosed me based on that as everything pointed to Hughes from my teens. With the right treatment I have had a successful second pregnancy and birth, totally different to the first. she's still slightly small and came earlier but I'm much healthier this time round, she's a much happier baby too. If you're in the uk try and get refereed to a lupus or Hughes pregnancy clinic they gel those trying too. To get things moving I paid for one private consultation with Dr Khamashta, it was worth every penny. Unfortunately he's on sabbatical but maybe there's another Dr you can see. I know the waiting is really hard. Good luck xxx

[staplegunsarefun in reply to fbenny]

Thanks so much for the reply. I'm in the US and have an appointment with a rheumatologist coming up next week (a referral from my fertility clinic). I guess I am just really worried they won't take things seriously.

I had some health problems a few years ago that they initially thought might be lupus (extreme fatigue, joint pain and swelling, hair loss and a positive ANA), but follow up testing wasn't consistent (ANA went back to normal, and no additional tests were positive). Eventually when the more visible symptoms went away but I was still struggling with the fatigue and pain they told me to take tylenol and anti-depressants and made me feel like a hypochondriac. And I am feeling pretty awful again, and have had 4 losses (with one live birth in between). But I'm very worried that they aren't going to take me seriously since my symptoms might not fit the exact criteria. I really, really want to get things figured out so that I can feel better.

[Lure2]

I do hope that Rheumatologist understands APS! We know from own experience how important that is.

If you think he is not taking your case seriously I advice you to read again what APsnotFab (Administrator) suggested 6 Days ago.

I live in Stockholm and I know one woman with APS who went to see Prof Hughes with her family. Your life is worth it.

Best wishes from Kerstin in Stockholm