Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,356 members • 10,544 posts

All posts for July 2019

CAPS or Primary APS with Alveolar Hemorrhage

Anyone have CAPS or Primary APS with Alveolar Hemorrhage? Looking for treatment options .... we have done Plasmapheresis, Rituxan, Steroids, Plaquenil,...

Anyone have CAPS or Primary APS with Alveolar Hemorrhage? Looking for treatment...

•5 years ago

Do our APS antibodies go after ALL phospholipids or just those in our blood?

I have seen this question posted in APS Facebook groups. I am hoping someone knows the answer. Do our APS antibodies only go after the phospholipids in our...

I have seen this question posted in APS Facebook groups. I am hoping someone kn...

•5 years ago

EULAR Treatment Recommendations for the Blood Clotting Disorder APS

Whitney J. Palmer July 9, 2019 The European League Against Rheumatism (EULAR) has prepared the first set of treatment guidelines for antiphospholipid syndrome...

Whitney J. Palmer July 9, 2019 The European League Against Rheumatism (EULAR) ha...

Administrator•5 years ago

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Query re: Occipital nerve block (GONI)

I normally receive Occipital nerve block injection on the right side every 3 months for my migraines but since my last one I have started on Warfarin. At my...

I normally receive Occipital nerve block injection on the right side every 3 mon...

•5 years ago

Medichecks Thyroid test- offer

A few people in here have talked about this test from medichecks due to a ‘trend’ in thyroid issues presenting in APS patients.I thought I should share that...

A few people in here have talked about this test from medichecks due to a ‘trend...

•5 years ago

Why is my INR so low?

Prior to having surgery to replace my right shoulder, I was taken off warfarin and put on lovenox injections. After the surgery, I have been taking warfarin...

Prior to having surgery to replace my right shoulder, I was taken off warfarin a...

•5 years ago

APS - pregnant again after 3 miscarriages

Hey all again, I'm pregnant after having 3 recurrent miscarriages in row and as per my previous post I have been diagnosed with APS weak positive. I'm slightly...

Hey all again, I'm pregnant after having 3 recurrent miscarriages in row and as ...

•5 years ago

An analogy to help explain our condition to children and normals!

I wrote this as a reply to a post where someone was asking why we are always tired. I thought it may help others so have posted here for all to see: Why are...

I wrote this as a reply to a post where someone was asking why we are always tir...

•5 years ago

Am I now triple positive?

I am lupus anticoagulant positive. Take Warfarin, Asprin and at INR 3 or less Clexane too. My INR fluctuates wildly one week between 13.9 and 2.5. I have...

I am lupus anticoagulant positive. Take Warfarin, Asprin and at INR 3 or less Cl...

•5 years ago

More recent results Updated with family history.

Hi, just out of curiosity would these results be a cause for concern to watch (anti cardiolipin antibodies IgG) I will attach a picture of the results....

Hi, just out of curiosity would these results be a cause for concern to watch (a...

•5 years ago

Unrelenting tiredness

Hi. I had my first stroke in 2002 and got my diagnosis of APS in 2005. Since the first stroke I have suffered greatly with fatigue. Every now and then things...

Hi. I had my first stroke in 2002 and got my diagnosis of APS in 2005. Since the...

•5 years ago

New member

Just thought I'd introduce myself. I live in the US, midwest. I was dx'ed hypothyroid 30 yrs ago and with SLE, APS, and Raynaud's 18 yrs ago. After some screwy...

Just thought I'd introduce myself. I live in the US, midwest. I was dx'ed hypoth...

•5 years ago

Another update, not so positive, but thoughts appreciated

My original postings here: https://healthunlocked.com/hughes-syndrome/posts/140158143/update-on-my-appointment-with-haematologist First of all would like to...

My original postings here: https://healthunlocked.com/hughes-syndrome/posts/140...

•5 years ago

INR checks in Edinburgh

Hi, I am going to be travelling from Australia to Edinburg in August and apart from the stress of having to get up and walk every hour on the flight I will...

Hi, I am going to be travelling from Australia to Edinburg in August and apart ...

•5 years ago

Birth defects

Hi all I know miscarriages are well known in aps, which I Have not had however my son was born with a hand defect (missing fingers small arm in fact carries on...

Hi all I know miscarriages are well known in aps, which I Have not had however m...

•5 years ago

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