Sticky Blood-Hughes Syndrome Support

A few very basic APS questions... Just curious

I'm curious about what you do daily with APS and what makes you feel best? And some other stuff.... I tend to feel best when I can actually get the energy to exercise and cook right.... Sometimes it's so, so, so hard...

what is your treatment (warfarin, aspirin only, etc)?

How long have you been diagnosed?

Other AI diseases?

Type of exercise, if any?

Diet?

Supplements?

History of APS events?

Have you/ do you smoke?

Alcohol?

For me:

what is your treatment (warfarin, aspirin only, etc)?

-- currently on aspirin only (81 mg, sometimes double when I feel 'weird')

How long have you been diagnosed?

--6 months, only found because I had a pre- conception test

Other AI diseases?

--Hashimotos- hypothyroid. And currently being tested for others

Type of exercise, if any?

-- walking at high pace, pilates, weight training (at the very least 30 min. Per day++)

Diet?

--low inflammatory foods, low gluten, low sweets/ saturated fats, less white carbs, less processed, less dairy--- more whole natural organic foods, lots of veggies/ fruits, and fish and healthy fats

Supplements?

vitamin D, B-12, folic acid, dha multi- vit (also take synthroid)

History of APS events? Migraines, dizziness, foggy head, problems getting pregnant, severe fatigue, and other stange anomalies....

Have you/ do you smoke? Yes- quitting

Alcohol? A glass or two of wine a night, sometimes three. ; /

4 Replies
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Hi there, I am sure a lot of us will be keen to give a rough idea of what we do... and do have a trawl through the polls which have been done over the months, as quite lot of these questions have been answered with visible charts attached. However I exercise and pace myself, diet good, drinking virtually never, makes me feel worse, natural foods, low gluten as well, processed foods avoided and also only apsrin, however I have four other diseases as well including hypothyroid M x

Reply

Good morning

what is your treatment (warfarin, aspirin only, etc)?

-- currently on Warfarin 8mg INR range 3 - 4

Also diltiazam for AF and Angina

Ramipril - high blood pressure

GTN spray for Angina

Inhalers for breathing

Acute meds, antibiotics, steroids, oramorph for pain.

How long have you been diagnosed?

--3 months, after multiple PE's detected and DVT

Other AI diseases?

--None that I know of

Type of exercise, if any?

-- walking at low pace, very breathless due to severe lung damage

Diet?

--try to cook home made daily, more fruit, seem to crave carbs, need to lose weight regularly on steroids, so causes weight issues

Supplements?

None

History of APS events?vision problems, 7 years in wheelchair due to unexplained paraplegia, 7 miscarriages, multiple pe's and dvts that have gone undetected.

Have you/ do you smoke? quit using Champix tablets, highly recommend them.

Alcohol? A glass or two of wine now and again

Hope everyone is doing as well as they can

Smiles to you all

Lesley

:)

Reply

Hi

Warfarin Plaqenil spirilactone Losec citlapran 24 / 7 Butrans Pain Patch

Lupus / Sjogren's / Antiphospholipid Syndrome / Anemia of Chronic Disease / Multiple Tia's / Osteoarthritis / TMJ / Mild Cognitive Impairment / Post Viral Fatigue / Depression.

I don't do much as I am sleeping most of the time due to so many health problems

Don't smoke Don't drink

Became ill after the birth of my 3rd baby girl took 17 years to DX me

I have had Hughes Syndrome now for 28 years I have never been in remission I live in Hope x

Reply

what is your treatment (warfarin, aspirin only, etc)?

Clexane for APS but I also have Lupus and together they resulted in me having a renal transplant so altogether i take: mycophenolate mofetil, tacrolimus, folic acid, omeprazole, solephenacin and clexane

How long have you been diagnosed?

diagnosed in Dec 1999 aged 19

Other AI diseases?

lupus sle, possible others but we're looking into them, slowly - i feel that i have enough!!

Type of exercise, if any?

walking dogs, riding horses, diy (doin up bits of the house!) and gardening when the weather is good

Diet?

i eat pretty much what i like, but i am reality healthy - i like veges and rarely eat fast food - take away one a week at most but i have a troublesome sweet tooth!

Supplements?

none

History of APS events?

dvt x3 in body and many clots in the kidneys, migraines, memory loss (short term)

Have you/ do you smoke?

never

Alcohol?

max. 3 glasses of wine a week

Hope that helps

Tx

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