Confused & anxious about APS - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Confused & anxious about APS

Rekrats profile image

Hello. In 11/2020 I developed necrotic finger tip ulcers on 2 fingers. Saw vascular surgeon who said Burgers since I was a long time smoker. Referred to see a rheumatologist , & B2 g igm was high. Nothing else. She said aspirin .I stopped smoking. Thinking it was Buergers, was referred to a Beuregrs researcher cardiovascular Dr who admitted me to hospital. Was put on heparin, but I never asked why. I had faint radial pulse,CT of upper extremities & chest normal. Sonogram of my upper & lower limbs,no clotting found. Was bridged to Warfarin & released.Fingertips healed. I've seen various doctors,but I now just with the cardiovascular who started the Warfarin. Last appt in 6/2022, said looked good, Radial pulses good. I asked if I could stop Warfarin.He did all bloods again,B2 G igm still high. Wanted to know if APS or Burgers was the cause,so I had virtual appt with specialist at HSS in NY. Found aps/PT igm high at 79. B2 g igm still high. Stay on Warfarin which (I hate). I'm so confused if I have APS or Burgers. I was referred by my Dr to a blood clot specialist . will have appt next Tuesday. I am extremely anxious about all this,at 69 years old. I want to enjoy life, but this is overwhelming me. I need to stop reading so much about this,but can't help it. I just wish I could find what,if anything is wrong with me. I just needed to vent.Thanks for reading. Iguess I'm just looking for other experiences . Sorry again for the long rant🤔

12 Replies

I am unfamiliar with Burgers. Reading your post is my first introduction to that. I am 67 and have been on warfarin for the past 23 years. Pre warfarin I had blood clots in my legs and (MRI confirmed) mini strokes. Since warfarin I have had no clotting -or bleeding -issues. My igG and Cardiolipins were sky high before going gluten free in 2004. Since then I have tested negative for all APS markers, but I remain on warfarin as I seem to be doing just fine. Sorry I can not answer your question. Stay strong. You are being treated for ... something. And if your symptoms have abated, the treatment seems to be working.

Rekrats profile image
Rekrats in reply to GinaD

Thanks so very much.

MaryF profile image
MaryFAdministrator

Hi, I enclose the charity website when you go to the appointment, you may wish to show them this regarding useful information, hopefully the specialist does have some working knowledge of both diseases and can help you further, please try not to worry, it is worse not to be in the system without a doctor and consider taking a trusted friend or relative with you if you feel nervous about attending. MaryF

ghicworld.org/

Rekrats profile image
Rekrats in reply to MaryF

Thanks!

KellyInTexas profile image
KellyInTexasAdministrator

Hi Rekrats,

Firstly,

Congratulations on stopping smoking! Must not have been east during Covid, during the lock down… that took extra will power.

You say you also now have a prolonged or elevated PT. Are you saying that you are testing positive for the LA, or Lupus Anticoagulant, as well as the original Beta 2 Glyco Protein 1g B2GP1)?

If that’s the case, and you now are testing for a second antibody, that really should give you even more confidence in your diagnosis, in my opinion.

I have read about a Reuters here and there in my readings of Raynauds. I suppose it’s always possible to even have both conditions- since you do have the APL Antibodie(s.)

I would think the vascular surgeon would and cardiologist together would know- but the real sign is warfarin is working and your distal pulses are better, and the lab tests are picking up the antibodies, and they seem to be increasing as I’m interpreting what you are writing.

Many people have anxiety with diagnosis initially, especially to warfarin.

Usually it’s a matter of getting better working knowledge of warfarin ( really just keeping very steady on the same level of green vegetables every day… live your life / diet very steady) and learning which medications ( prescribed and over the counter interfere with warfarin.

You can ask me for tips on how to set of a chart - xerox a monthly blank chart that you can use to record your INR, warfarin nightly dose, and daily notes ( any changes like illness, up or down in vitamin k values by adjusting green vegetables) medication OTC, Change if medication by doctor temporarily Precsribed due to UTI, chest infection, etc, so you can see how it affects INR. That way you can know next time if you can take that medication again.

Save that year’s 12 month log . You will always have your records and notes to refer back to.

Your doctors will very much appreciate this.

Who is your regular APS hematologist in NYC?

Rekrats profile image
Rekrats in reply to KellyInTexas

Thanks so much. I am negative for all except b2 igm, which I understand is less important than igg. All tested several times. At 1 time was tested separately for anti p.serine igg/igm as negative with PT igg also negative. Recently HSS did aps/PT complex which came up as 79. I don't know if both tests were the same kind.. I don't have a hemotologist. Have a n appt this Tuesday with Dr Spyropoulos a coagulation expert. If stopping smoking is why this got better I'm not sure if I need Warfarin. I am not La or acl positive as far as I know, and have had several tests. Nobody seems to know for sure, so this is causing me so much anxiety. But y Sams token, of course, I don't WA t any clotting events. I don't even know if the fingertip ulcers were clotting or Burgers or raynauds.Thanks for your response.

new2aps profile image
new2aps in reply to KellyInTexas

Kelly can you send a sample of the blank chart you use to record?? Thanx

KellyInTexas profile image
KellyInTexasAdministrator in reply to new2aps

Yes, happy to do so.

Ill post it as a general post tomorrow into general format that you can then then click on to download then send to your printer. ( save to your files so you can print more. )

Look for it as a new post very soon.

new2aps profile image
new2aps in reply to KellyInTexas

Thank you Kelly, and I hope you are feeling better post-covid. It looks like alot of folks INR's go up with BA5.

My INR was stable, but this week 3.92. My target 2.5-3.5. I am wondering if red licorice raises it? Otherwise I have no idea why it went up over 1.08 points in 10 days. I need to track INR's and dose better....for future reference.

KellyInTexas profile image
KellyInTexasAdministrator in reply to new2aps

I’m better, yes.

I’m trying to time tying in with my admin assistant. She has my inr chart on file- and I’m heading to San Antonio for an echocardiogram and then to my rheumatologist.

It’s on an excel format I think so I want to be link it in an email as a PDF.

My INR is set at 6.5 which is not at all the norm.

We started with 4.0, then 4.5 - but had DVT’s.

Enoxaparin, but clotted quickly. ( even with 75mg aspirin and statin and Hydroxychloroquine added.)

Tried high intensity apixiban - clotted.

Most recently tried fondaparinux. That was also a failure.

I’m on rituximab. We are about to add methotrexate to that. ( talking about all this today, or any changes that might be considered.)

This past Sunday my INR shot up to 14.02.

The next day it was 5.44 . No reversal- I only had strongly steeped green tea and extra spinach.

My doctor wonders if it was a lab anomaly. We are simply not sure.

I’ve been in range for the last two days.

Paperwork
new2aps profile image
new2aps in reply to KellyInTexas

Hi Kelly...thank you for sharing. Do you vein test almost everyday? Or do u selftest with finger? That one 14 could be lab error? I can't imagine all you have experienced...so sorry, but thank God for this forum for medical and morale support! I am curious....do you take a multi vitamin and if so which one and why? I haven't eaten dark green leafy veggies, which I use to eat daily pre.warfarin. I am too afraid I wouldn't be vit k daily consistent. I do eat iceberg lettuce salads. I read somewhere that lower vit K intake causes unstable INR's so I am trying to increase vit K some. I am having knee replacement surgery in a couple months so my anxiety level has increased around getting INR stable and getting the docs to agree on my target dose.The hospital staff shortage is scary too so proper care is concerning. Do you have a blank chart to send as well? I love it!! TU!! And praying you are 100% better, and stabilized.

KellyInTexas profile image
KellyInTexasAdministrator

Ok, I see PT can also mean Pro Thrombin clotting time, as in PT/ PTT , if that’s longer than the normal time it can indicate LA, so I was not clear on your abbreviations.

Best let your specialists advise you!

Sounds like you have very good ones!

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