Just wondering

[MrStickyblood]

I was diagnosed with APS/LAS in February, trying to keep my INR at 2.8 or more, was having trouble with it for about 6 months. I reading a lot of different posts on here and seeing my a lot of my symptoms are close to or the same as what I’ve read. I am a male in my mid forties and honestly I’m scared of what’s going to happen next. Apparently I’m the only male in my county that has APS/LAS. My primary doc is doing better than my last, the Hematologist is the one who found what’s going on but damn there’s not enough medical professionals around to help me just giving several different meds twice a day, sometimes three times a day to help me to help me get thru the day.

[HollyHeski Administrator]

Hi, welcome to our forum, we are not medical advisors but we do share our experiences and give support.

Please believe me you are not the only male with APS!

You mention symptoms but can I ask what led to your haematologist thinking Hughes/APS?

Where are you based?

[MrStickyblood in reply to HollyHeski]

INR going up then dropping real low, saddle embolism approximately 8” across the arteries in my lungs then clot in right leg one week then the next week another on in the left leg. Hematologist decided to do a series of tests 13 in fact to rule out some thing and maybe she’d light on the right thing. I’m in north central Texas

[KellyInTexas Administrator]

Hello, I see you’ve just joined.

I’m also in central Texas.

You mention county- that’s funny 😄! We are a big state!

You need to , however, hone in on a city ... where are you located? I’m sure you have a very competent Hematologist. It sounds like she’s evaluating you very carefully.

So what questions can we help you with specifically?

We are not medically trained, but so often it’s very helpful to find a group of patients who are going through the same things you are, and have been down the same road.

If you are started on warfarin, for example, we have been through the learning curve . We know resources . ( I had only a brief training when hospitalized with first clot and diagnosis.)

These are some examples of how our forum has been very helpful. Coupled with your physicians guidance, we wish you the very best and hope to be of support to you to the best of our ability.

So from central Texan to another, a heartfelt Welcome and a tip of the brim to yer.

[MrStickyblood in reply to KellyInTexas]

Chico Texas actually, really no questions I’ve been researching this autoimmune disease and reading a lot of other persons experiences

[MaryF Administrator in reply to MrStickyblood]

Please have a good look at our charity website, ghic.world/bsite, which contains great information, and there are plenty of men all over the world with this condition! Including in my own family. MaryF

[Lure2]

Hi and Welcome to our friendly site!

I think it is around 20 % if not a little more, male-APS. I wonder if you are positive to all the three antibodies; anti Cardiolipin, anti-Beta-2-Glycoprotein 1 and Lupus Anticoagulant?

That can have to do with how high your INR should be. I am triplepositive and need an INR around 4.0 to feel ok.

What is your therapeutic level of the INR set by your Hematologist? If you are positive to Lupus Anticoagulant it can be difficult to keep the INR stable but "CONSTANT" is the word we use every day. Sometimes for us the INR differs quite a bit taken in a vein or in the fingertip. It is the vein-value that counts! I live in Sweden and I selftest to be able to follow my INR.

As you say you need a Specialist of autoimmun illnesses who is knowledable of APS and works with these patients daily. They are very few (we know here) but very, very important for us to have!

Hope Kelly in Texas can give you a good name to hold on to.

Please stay with us here and also try to find "Sticky Blood Explained" by Kay Thackray. There are two books published; an old and a newer one. I have read both but both books are about APS and both very good, also for relatives to understand how it is to have this illness. Kay knows as she has got APS herself.

[jetjetjet in reply to Lure2]

Hi K do you think it is 20% on site or in world. I don't think that there are nearly as many males - heck i remember back in the days of Pattie and BD and i can only think off hand of may be 12 males on here . I am curious my friend. i have been on here 9 years .

[Lure2 in reply to jetjetjet]

I read it quite recently. In the world that is. I can be wrong.

[Lure2 in reply to jetjetjet]

I could not now find exactly where I just recently got my number 20 %, but if you read Sticky Blood Mentors post recently on May 29, "Risk Score Predicts Thrombosis Recurrence in APS" you can get 30 % on page 2; "the analysis included 379 patients ...... patients´mean age was 47, and 70 % were women". This is not worldwide but only out out of 379 patients and says 30 %.

[jetjetjet in reply to Lure2]

I have read 1 in 10 are male -But i guess it's who is making the comparison . What article -

[Lure2 in reply to jetjetjet]

No, it is more than 1 in 10. Estimated to be at least 30 %. Many women have miscarriages as a big symptom and then the number must be lower of course.

[MrStickyblood in reply to Lure2]

Target INR is set at 2.8, however Hematologist did say that up to 3.5 would be ok, although I would like to self test my company doesn’t provide health insurance and my wife and I are barely making it so I can’t afford an INR test kit. I am positive for Lupus Anticoagulant Syndrome

[Lure2 in reply to MrStickyblood]

If your Hematologist is knowledable of APS he understands that with Lupus Anticoagulant also if may be too low with an INR of 2.8 and that you get a lot of different APS-symptoms. Hope you can test your vein-value rather often if you can not get a selftestmachine.

[GinaD]

It is quite doubly intimidating to:1find out, after dramatically scary symptoms to be told you have an incurable, life long illness, then ;2 be placed on a medicine which effectiveness varies by patient as well as by diet, activity level, 🥴 mood?, zodiac sign? ...who knows what else?

But I predict that you will find a good doctor and you will surmount this what-treatment-best-controls-the-symptoms hump and you will then settle into your new normal. We are all here to share our experiences and support each other. Stay strong,. Getting the diagnosis is more than half the battle.

[MrStickyblood]

Thank u for uplifting thoughts