Any one have...

[bhaskar2boda]

Is there Any one have 20 to 30 years of time with aps syndrome on anticoagulant treatment ...with out LUPUS i.e my question is can we live 40 to 50 years with aps at time of diagnosed life expectancy please give me answers....💐

[PickledGinger]

Hi I have had APS for 15 yrs and on anticoags, I have never been told or read anywhere that it reduces life expectancy. However I am not an expert so it’s probably best speak to your consultant. Stay well.

[KellyInTexas Administrator]

This is a highly individualistic and case by case answer, and one you must discuss with your consultant.

I will tell you that it makes a big difference to have a hematologist who has a very good understanding of APS .

The same goes for your Rheumatoligist, to evaluate if other auto immune diseases are joining in, etc. Auto immune suppression may be needed.

These two top specialists can spot if you need other top specialists in your care, like neurology, assuming you don’t already have one if needed, Gastro, endocrinologist, nephrologist, etc.

Organ by organ... you must have specialist.

ghic.world/

[MaryF Administrator]

Has your doctor referred you to a medical consultant who understands this condition? Our charity has one recommended specialist in India - Dr. Anand Malaviya. However there are others who have written research papers. This is a disease which affects individuals differently, for instance my father had it and lived until he was nearly 80! You and your doctor need to be guided by the correct medical advice. MaryF

[judes]

I was diagnosed 22 years ago I had a very good haematologist at the time. I was reluctant to start Warfarin I will always remember him saying to me ‘if it was my wife she’d be on Warfarin’ so I did.

I’ve had ups and downs some of it down to APS some of it not

I personally feel that any illness shouldn’t rule your life, life is there to be enjoyed.

[HollyHeski Administrator]

My haematologist says I acquired APS between the ages of 18 - 25, strokes at 35 & 37, diagnoses at 42, now 15 years later, (wouldn't be with anticoagerants) very much alive and despite diagnoses of sjogrens, TOS, plan to live for a very long time!

Without the anticoagerants, I wouldn't be here now.

I've had my old age, now living my middle age.

[justlymostly]

I was diagnosed in 1998, my first miscarriage was in 1987 followed by 3 more, high bp, epilepsy and heart murmer and tia's so I have probably had it since 1987 ......On warfarin since 1998 and still going and enjoying life with some but not many limitations.

Don't ever give up.

[my_story]

Yes I have. Now in my late 50's I find as with others of my age, our bodies are not rejuvenating like they use to and I am starting to experience problems. These are largely due to posture and diet.

The only advice I was given don't play body contact sports (bruising on warfarin)and no scuba diving. No problem lots of other things to do.

I did go through a short period of feeling under a death sentence but with God's love and grace and just dealing g with everyday life I have passed through it.

Kind regards

[PsychNurse]

I'm 74 and have three other serious clotting disorders. When I first was diagnosed, it took me 2 weeks before I could get myself to swallow the Warfarin. Now I wouldn't be without it! I'm fine!

[Lure2]

I am 75, triplepositive with persistantly high titres and Pulmonary Hypertension and 2 leaking heartvalves. Primary APS and live in Sweden.

A Specialist is priority No one like a proper anticoagulation (usually Warfarin which is the best drug for APS) with a stable and rather high INR (3.5 - 4.0).

Had I been anticoagulated at once when they discovered my illness in 2002 I probably had not got so very high bloodpressure and so many microclots and my Pylmonary Hypertension and Leaking heartvalves. It is a rare illness and so few Doctors know about it and therefor we do need a Specialist who works with autoimmun illnesses like APS every day.

[KellyInTexas Administrator in reply to Lure2]

We have said almost the same thing. The importance of specialists is the main key to determining outcomes with APS in my opinion.

( I can speak from experience as my mother sadly passed at a relatively young age and did not have specialty treatment.)

[Lure2]

I forgot to say that Warfarin has been my lifesaver!

[David-Nisbet]

On warfarin 22 years after bilateral pulmonary emboli which ultimately required major surgery to re=open pulmonary arteries. Now 72.