Firstly , thank you all for your kind words xx to you all . So many of you have asked me to tell you of my journey with this so I’m going to do a daily diary ( it may help even one person) here’s hoping. So about a week an a half ago I started with a sniffle which over a couple days sneezing then into a cold . So I ignored it , as you do . Part way in the week a silly cough began , so say silly as it wasn’t a hearty cough more irritation, at the same time my head exploded, for those of us with g c a we know the pain !!! Treble that. In 2years iv 2flare up so high doses of preds , my poor waistline lol up an down like a whores draws 😂well I could not rid the pain nor could get speak to any health official so took it upon myself to up preds to 50 yes extreme but so was the pain . But no relief , so came down to 30 , now at the same time I began shacking with cold , so the symptoms were starting to form a pattern, hmm I thought by then my I/r was all over the place as I have auto immune illnesses, plus a p s syndrome, ecsessive small vessel diesese on the brain, tia’s gca lupas positive. So my head is always in some kind of pain ☹️But as we all know we have to get on with it . Back to co co as I call it 😃I was worried, I wanted to know but didn’t . My o m -old man went on to 111nhs site an we answered the question air which told me to call 111. Spoke to advisor then clinical staff , then nurse an finally doctors, like being passed up the food chain hahaha doc said he would call me back as by then found it hard to breath an pain in chest , he didn’t but within 5mins an ambulance was out side my home , wo this is real . Afraid, frightened don’t panic sue , yes that’s my name, now ya’ll pretend this is corona street (coronation 😂😂😂so you’ll have to tune in tomorrow for next episode ,but I’ll close saying I don’t think I’m not taking this seriously by joking , it’s my character an coping mechanism, love to you all an please enjoy this beautiful day xxx 🐒
Me again 🐵: Firstly , thank you all for your kind... - PMRGCAuk
Hey! It’s ME!
Kelly in Texas- With APS - I’m on here as a stray cat - the admins have taken me under wing to learn about pred.
Oh my...I’m so sorry to hear this.
Listen, tell your doctors if you have trouble with your INR it may be best to switch to Fondaparinux ( injections.)
1. Fondaparinux has been shown to be more effective with APS ( especially difficult to treat APS or refractory APS) than enoxaparin. It’s only once daily rather than every 12 hours.
It’s synthetic heparin- no risk of Heparin induced Thrombocytopenia ( HIT)
Also, the reversal that is used for Rivaroxaban and Apixiban ( Xa ) can be used for Fondaparinux.
Professor Beverly Hunt at Guys and St Thomas ( Head Of the hematology Dept. Is very keen to use fondaparinux in certain patients who meet requirements. ( especially those with neurological involvement/ arterial involvement) who have a difficult time with warfarin.
My APS specialist Rheum in London is recommending I switch to it. ( she and Beverly Hunt share a few patients. )
Currently my INR is fairly stable - so we are waiting. If I should get sick- Fondaparinux is the plan.
Dr Paul Holmes- neurologist in London/ APS specialist is also very aware that certain APS patients do very well on fondaparinux.
Be aware that acetaminophen will raise your INR up... as you know. And antibiotics...
I’m thinking you need to be switched to Fondaparinux or enoxaparin once your INR goes low enough . ( for you... 3.0?-3.5?)
Do you need to add a bit of clopidogrel?
How can I help you? Make sure to keep your hydroxychloroquine in system.
I’m an admin on the Hughes - sticky blood forum.
We haven’t had any cases yet....