Sticky Blood-Hughes Syndrome Support
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Halo

Halo

Hi everyone I’m touching base with you all as have had aps since 2009,after having 3 strokes . I still love living in the fast lane .. but can’t but it’s never stopped me enjoying life 😎I also have gca pmr osteoarthritis, diverdicktalitus lolcant spell it .an I think that is enough .

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Welcome, let us know where you are from? I hope you have a good Hughes Syndrome/APS consultant helping you to stay on track. MaryF

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Hi Mary 😀yes indeed I do I attend guy an st Thomas in London although I’m from Kent . They are very good they don’t just listen they hear !! A very rare quality in the med profession today .but I have to say I won’t be beaten. I know well enough that one bad day does not always lead to another so just get on with it .i never liked house work any how .an what can’t be done today will keep .how long have you had it ? An do you have any more ailments .? I noticed by your name, letters ,what do they stand for if I may ask ?

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Hi & welcome - we all have our history but we can share on here.

Our website ghic/world is also useful. You can read all about our admins here on our profiles.

Youll get to know us well!!?

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Hi holly ,thanks for that I’ll have a browse, an your so right there’s always someone worst of . Have you been with the forum long ?

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Hi, a year I think before becoming an admin. Brain fog & age - time just keeps going fast!!

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lol 😂 I know tat feeling well !! An are you in the uk ?

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Yes Im in UK.

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Hi Monk . I have 25 Dia. problems and most related to the APS - i have been here for 8 years or is it 9 -- brain cramps some times myself !! I'm from the states N.H. to be exact . Welcome !!

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Hi jet , nh now where is that ? N j or ny I know 😁 25 , now that’s being greedy lol name a few if you will

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Beside Maine-- North Massachusetts--North Of Ny Ny -- east of Vermont --South of Canada.

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New Hampshire

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Hi jet you’ve made me chuckle 😂when I said name a few , I meant you’re ailments !! If you wold care to share 🤓

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Glad i got a chuckle :-) -laughter is GOOD medicine-OK here we go !! As You know i am APS triple - AVN- Tremors - Migraine's w/aurora--Cataracts , glaucoma --Elevated Cholesterol -Circulatory Disease - Skin disorder's{ they still don't know what it was that was eating my left foot in 2015 &Allergic rhinitis } Diabetes {diet controlled at this time }-- Dvt's ,calf, knee , thigh,groin ' & PE , both lungs -Digestive disorder's --Osteoarthritis , toes, knee's-- fatigue-OSA- Asthma-carpal tunnel syndrome-severe muscle spasms -fatty liver [ checked every three months with fibroscan ultra sound }- Gall bladder polyp-Gastroesoghageal reflux disease-Hypercholesterolemia-memory loss, is becoming a big problem - cellulitis- Peripheral Vertigo- Aps flares - Erratic PT/ INR -

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Jet !!😂😂😂is that all ? Greedy I call that 😁I shouldn’t even laugh but I’ve got tears down my cheeks ,o dear I must be calm 🤓seriously though, poor you so much to deal with I pray that you are manageing ok , now my friend a ? If I may , tremours , does your head nod ? An at times does your body join in , I ask as yesterday I had mri as have recently begun to tremor , although not all the time , like you h b pressure, molar rashes scabs on legs bordering dieabetic, h collesteral ,mini strokes,ulcers,o ye an a new one , a heamotomer inside my knee which bled down inside my leg an ended up with black ankle ,apparently aps now eating my bones , etc , osteoporosis,an that’s it lol we could be twins 😃I love 💕 America but now unable to fly which for me is soo sad as my son lives in n j I was over in June so thank god I have beautiful memories an don’t start me on the food 🤪lol mm philly cheese stake , luv it !!

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Are you OK now - No i don't get head nods i have got them pretty much under control , was mostly arms and hands.I don't have high blood pressure. The bone problem with me is AVN hips and thinning jaw bone as far as i know now , i have dental appointments every 3 months to control this as much as possible. Sorry to hear so far from son - It makes it hard i cam imagine .

I think that is all you asked of me.

Casey and I

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Hey jet an Casey , how you doing ? I take it Casey is your wife 😁thanks for getting back to me , yes that was all I asked of you thanks , anvthankyou yes I’m ok getting used to shaking now from head to toe ,just can’t wait to se neurologist to get some answers an hopefully treated to get back to ‘normal lol what’s that ?? 😁wow your jaw . I’m betting that’s painful especially to eat so I’m wishing you well with that , well all the best to your wife an yourself ,no doubt we’ll talk soon over the pond 🍷raising a glass to wish you good health .

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Hi Monkey -- You are welcome -- No Casey is my Service Dog - he goes EVERYWHERE with me --even in hospital , he stays in my room the only time 24/7 365 days a year he isn't with me is if i am having open radiation or in recovery from procedures . my INR crashed over the week end i started tremors again in arms and hands also had to start Enox 120 ml's a day till it recovers to at least mid range about 3.0 hopefully

-- was taking my finger prick for Diabetes and i couldn't get the blood on the little prick thing -got it every where but though !!!! My glass to wish with would be vodka !! and i can call internationally with my calling plan for land line phones --i talk to 4 or 5 different people in UK and a couple other places - -- I enjoy talking to others -it is so different to actually talk than type everything you can hear a laugh and a joke etc.

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Halo you 😁o gosh fell better soon I’ll be in touch very soon 🤚🏽

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Hi what is gca pmr please ? Osteoarthritis I know. Thanks

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Hi blood 😁gca is great cell artery, a vessel in your temple artery that closes , I’ll let you look it up , makes for a good read , but that’s it !! Pmr is polymyalgia again severe pain through all your vessels affecting legs arms hips with extreme tiredness a feelin that your legs are cement when you try to walk , great fun lol it’s too like aps is life changing , hope this helped

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I was diagnosed in 2001. I'm aging, but still exercise regularly -- more recently as I am recovering well from my knee replacement this past June. I will point out, in case you don't know, that a side effect of warfarin is increased blood calcium levels which can end up in a joint causing osteoarthritis. So far, I have replaced 1 hip and 1 knee. I hope that's it as I have no pain in other joints. But if its a trade off between DVTs, strokes and debilitating migranes vs osteoarthritiss, then I'll take the osteoarthritis any day!

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Hi Gina an how are you today , in good spirits I hope , I second osteoporosis any day , I’ve had it roughly 9 years all over !! But hey ho 😃we have to smile

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I have been an avid hiker all my life, and, as fellow Trail clubbers have noticed, hikers and duistance walkers seem to recover much faster from joint replacements- which I have certainly done. So, yeah. Im doing fine. I broke my knee when

i was 8. due to family turmoil it was not set. I have limped a bit on it ever since - until that hip and then knee replacement . Now my knee operates better than it has for the past 55 years!

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That’s great to hear you’ve recovered so well , an I quite agree being mobile always aids recovery,so good for you with many other benefits , wishing you well Gina 🦋

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Hi Monkeymate,

I really want one of those monkeys!

I also live in Kent and attend St Thomas Hospital.

This is a great place to be if you have APS, the support and knowledge you can receive from the wonderful ladies on Sticky Blood is truly invaluable.

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Well you ain’t having mine 😂 so how /why were you diagnosed?

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Hi,

You attend Guy and St Thomas in London. Good reputation I think with some very good Specialists of APS I have heard. I live in Stockholm.

Have not told us what your anticoaguation drug is at present and how it works with your APS?

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Hi 👋 to you to , well I’m on a thinner called sinthrome that I gather not many have heard of , my range was 3-4but due to bleeds it has been lowered to2-3 ,which for the last couple of months has been impossible to hit,one day I’m at 1.2an the next 8.7 so I’m all over the place but seeing as there’s so much going on in the old body I’m really not surprised!! Just would like things to settle so I can have restbite 😁I have other illnesses as do we all but just have to get on with it ! My only consultation at present are my steroids as I get to eat as many cream cakes as I feel 🍰so you see every cloud does have a silver lining lol , so how are you ?

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I am 74, how old are you when you talk of your "old body".

With those INR (I guess it is the same as Warfarin you have got ..... why not Warfarin?)

I understand you do not feel well at all. Are you selftesting or are those numbers your vein-values. For many of us they differ quite a lot so we have to doubletest rather often to feel safe in our APS. Important to have a proper anticoagulation. Are you triple-positive (all the 3 antibodies positive)?

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I am dosed by self testing at home but e mail results to doctors who then e mail back with dosage to take , which for me is great as if I can’t get out it’s not a problem . Now to be totally honest lure I don’t an have never understood double or triple aps sounds strange I know , an even ignorance on my part for not asking an educating my self , ignorance is bliss sometimes , an for me personally I don’t believe I’d of coped as well as I have if I knew all that I’d of had to face .bur just maybe you care to tell me what triple aps does /is 😀might even have it lol o I’m 61 years young !!

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I forgot , stopped warding as hair fell out (not a good look ) 😂😂I recall my dose was high 10 mg p day .sinthrome is very sensitive hence the dosage is so different .

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You have to find out by talking with your Doctor who is in charge of your anticoagulation!

Also there is usually a discrepence between the blood taken in the vein at a welltrusted lab and the blood taken by yourself at home in your finger (taken within 3 hours of time) . The true INR-value (value that counts) is that taken in the VEIN. If you doubletest several times you know if you have a big difference between the two and always the SAME difference. Then you can selftest at home and know how much you must reduce your home-value to know of the real value in the vein. These things are really important for you to know.

I dose myself and test rather often at home as my values are very instabile as I am triple-positive with Lupus Anticoagulant (taken positive several times before I started with Warfarin) and as I have persistant high titres since 2002 they assume I am still Lupus Anticoagulant positive today.

You can help yourself by educating yourself and try to find a Specialist who can help you feel better. If you are triple-positive it is said you have greater risque for tromboses etc. I do not know but I just try to keep my INR in the right spot (difficult I know but you can learn) and if you stay on our site you will learn how many ignorant Doctors there are and who do not know that we have too "sticky blood".

So if your meter shows 5.0 in the finger you perhaps have only 3.5 in the vein. I do not say you have that discrepence but you have to find out.

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lol thanks lure I already knew that 😁having done this since 2009 !! You have a good day 🌹

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The dose is not important but the INR is. If you eat greens you have to have a bigger dose of Warfarin. Important to always eat the same amount of greens.

If you want to lower your INR you eat more greens and that goes faster than changing the Warfarin. That can take up to 2-3 days before you see the result as to the tablets. Usually the Doctors do not understand this. That is why many persons will get a jo-jo effect from the tablets. I almost never change my tablets and if I do I do it with 1/4 of a tablet. I take 5 mg a day (two tablets) but the number is very different from person to person and also if we eat green food that makes our INR change like if we take new drugs some days etc etc.

I change my amount of greens to get in range with my INR and usually stay with the same sort of healthy food to make life easier.

The INR-number is important to maintain though!!!

Remember we are all different persons with different bodies but with the same illness.

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O yes I know we are all different people with aps although I have many ! But I thank you for reaching out to me, I’m smiling here as you didn’t tell me any thing I didn’t already know 😂yo have a good day

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