Antiphospholipid Syndrome / Hughe’s S... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Antiphospholipid Syndrome / Hughe’s Syndrome

Mrsromeiko22
Mrsromeiko22

I have APLS. They found it after I had a miscarriage and a blood clot behind my right knee. Since then, I have been on Lovenox injections, and will be on them for the rest of my life. I tried Warfarin, but my INR kept fluctuating from a 0 - 10.

I found out that I am also an active MRSA carrier. This makes every scratch, nick, mosquito bite, etc., a very scary situation.

No matter what I do, I can’t not get bit by mosquitoes. When I do, I get hives everywhere and often end up with infections. Those infections make my muscles, joints, and bones ache.

I also carry an epi-pen because I have found that I am allergic to anything, and everything with wings.

Has anyone ever had chest pains that got increasingly worse over a few days, and when blood work was drawn at a doctor or hospital, felt an enormous pain in your chest, then all the pain disappeared? I had this happen once, and after a CT scan was performed of my chest area, I was told there was no evidence of a PE or any clot now or previous in that area. Just questioning.

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MaryF
MaryFAdministrator

Hi and welcome, many of us on here have a mix of disease alongside our Hughes Syndrome/APS and allergies are not uncommon. It is important that you have a specialist who fully understands this condition and also looks at your level of Vitamin D, B12, Iron and Thyroid as all of these if not right can make things worse. Where are you located? This will help members help you with regard to who they see. A decent specialist not only helps you but also your GP. I am glad nothing serious was found with regard to your chest pain, however it is always important to check out any new symptom.

MaryF

KellyInTexas
KellyInTexasAdministrator

Hello,

I’m in the USA- Texas as you can see from my name on the forum.

I also have episodes of syndrome X, or cardiac syndrome x if my INR goes below 3.5

I was also on Lovenox ( enoxaparin) exclusively for a brief time because I could not stabilize my INR despite staying very steady with diet. About 10-20% of APS cases fall into this category.

I reclotted very quickly ( and felt very unwell during this time with classic APS symptoms) despite my factor xA being high normal. I was switched back to warfarin ( brand Coumadin).

I’ve recently been evaluated by a top Hematologist ( in London UK) who explained my previous heme did not handle my Lovenox correctly with regards to timing of injections/ peaks/ troughs. It should be administered at 1 mg / kg every 12 hours.

APSnot Fab could be correct on that your coverage might be too thin if you are experiencing cardiac syndrome x.

Where are you? Which state?

Hi I am glad u found us and hope u get the support u need. They are a kind bunch of knowledgable people but also empathic. I've had some very down times and they have helped hold me up. So welcome.

I am sorry to hear about ur miscarriage, unless you have been through one it's impossible to understand the emotions involved. All your hopes and dreams for the future are dashed. But hopefully when u r balanced re anticoagulation and vitamins etc with the guidance of doctors u will b able to try again.

1) TESTS have u been tested for other autoimmune conditions (many of us have Sjogrens Syndrome, Lupus and/or Hassimotos -thyroid) and deficiencies, like thyroid, vit B12 and vit D many of us have fibromyalgia too ?

2) ANTIBODIES & INR do u know which APS antibodies u have out of the 3. I am Lupus Anticoagulant Positive. This is renound for causing fluctuations with INR. Mine has varried from 1.3 - 11.3 within 10 days a couple of times this year, with no dietary, medication or infection changes.

3) ANTICOAGULATION I have been kept on warfarin as it offers the best protection against clots in both arteries and veins. When it's too high I'm given vit K and when it's too low I'm given Clexane/LMW Heperin (which is dosed per kg u weigh and given 12-hourly)

4) TARGET INR most of us have high targets and ranges due to clots still forming when at a lower INRs. My range is 3.5 - 4.5 with a target of 4. When I'm below range I take the injections in addition to warfarin.

5) BITES. I virtually never get bitten I always thought it was due to the fact I'm taking the quinine based drug Mepacrine for Lupus (I can't take Hydrochloroquinine) [spelling ?] my vitamin B levels are good too as people with low levels are often bitten they say? Health shops here in the U.K. Sell B complex pills which people take up to 6 weeks b4 going on holiday, and throughout their vacation, to places with mosquitos. Maybe worth looking into? I seem to remember being told to avoid bananas if ur prone to being bitten? I would do ur own research into why some people are bitten it may give u some tips if ur doctors can't. If u do take anything or change ur diet please ensure u tell ur doctors and be constant with it.

6) CHEST PAIN. Chest pain is scary. Firstly you need to ensure u are fully checked out. In the meantime, keep a diary :

date, time, activity at onset, pulse during pain (I bought a pulse and oxygen saturation reader), length of time pain lasted, other notes e.g. Emotions at onset (were u stressed, excited, relaxed, asleep, overtired, etc) this info will assist ur doctors and save time because u can show them at ur first appointment. It will help direct them as to what best to do & test for.

7) CARDIAC X. THIS has been mentioned here and is written about in Kay Thackery's book Sticky Blood Explained. I believe I have it but my cardiologists didn't seem very knowledgable on it. I suggest again u look into it yourself. Maybe someone here can direct u to a good source of info.

I hope all this helps you. I look forward to talking again soon. I'm sure you will gain help and support and later return it to others. Lots of love, light & strength to you 💋

You’ve gotten some good answers here. Please tell us where you are, I’m in NJ

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