Help Advice Needed: Ive had 7 PE's even... - Hughes Syndrome -...

Hughes Syndrome - APS Support

9,532 members9,645 posts

Help Advice Needed


Ive had 7 PE's even while taking warfarin. Had a stroke and a number of TIA's and a Heart attack. But i also have a number of other health issues. Angina, Coronary heart disease, Murmur of Pulmonary Valve, High Blood Pressure, High Cholesterol, Irritable bowel syndrome, Hiatus hernia and Oesophagitis , Under active thyroid, Venous Insufficiency , Night cramps, Asthma, Osteoarthritis, Osteoporosis, Anaemia, Insomnia, Chronic fatigue syndrome, Fibromyalgia and Back problems discs sciatica, and in the last year ive got a pyoderma gangrenosum ulcer on my leg. What other illness's seem to go with APLS?

I got told i had APLS when i had my first clot 22 years ago, and since then ive added illness'es every couple of years/ year. They just get written in my health record and a tablet given. I have serious pain issues and i got seen at the local hospital pain management clinic, so what ever illness causes me more pain i get told that my other painkillers will work .. well they dont.

Ive noticed that people mention anticardlollpin (aCL) the lupus anticoagulant (LA) and anti-beta2-glycoprotein1(anti-B2GP1) mentioned as this is how you get the diagnosis of Hughes Syndrome /Antiphospholipid syndrome (APS). Ive never seen if ive had that done when they have been testing my blood and as nobody has said anything to me.

Im aware that warfarin is not controlling my INR. I did have a bridging of Fragmin injections on top of my warfarin when i had a total knee replacement operation for 12 days using

So how do i go about self testing of myself? and what would the benefit be for me?

Would i be better trying to see a Rheumatologist, or a haematologist, Im not sure if there is a APLS specialist in the staffordshire?

thanks in advance for your help.

11 Replies

I wouldn't know where to start! you poor thing! Have you had anyone to follow up your APS? How often do you get INR tested? If you give your location I think the Admin on here may be able to point you in the right direction. There is a list of APS specialists on the right of this page and you may be able to find someone close to you. I get followed by a Haematologist, a Rheumy and my GP who are all very aware of my APS and I get good follow up.

Hello and welcome.

Please familiarise yourself with our charity's website:

Have a look at the page which lists APS specialists in the UK:



Please do see the answers on your other post 5 days ago!

As it is a Rheumatological illness a Rheumatologist is the No 1 doctor followed by a Hematologist. But the most important is that it is a doctor that knows what to look for - a Specialist of APS! He may refer you to a Cardiolog, an Endocrinologe and Astma/lunge doctor among others.

Those symptoms you tell us is probably caused by APS. I have Pulmonary Hypertension and leaking heartvalves caused by APS. I have never felt the tiny PEs I must have had to get Pulmonary Hypertension. I have primary APS (no other known autoimmun illnesses besides APS) .

Best wishes from Kerstin in Stockholm

Hi again,

I also suggest that you cheque your bloodpressure. I had very high bloodpressure before I started warfarin. When we are on warfarin it is also important that the bloodpressure is normal.


Thanks Ozchick

No ive not seen anyone about my APLS other than the doctor that told me I had it 22 years ago when I had a clot on my lung. I lived in oxford at the time.

My INR gets checked every week or two weeks.

Hi Kerstin

I have high blood pressure which is why I take a tablet for it.

Hi Dave

Thanks for the list of specialists there are none in my area Birmingham seems to have the ones closest to me.

I hope your bloodpressure is ok after that tablet.

I still take 3 sorts of bloodpressure drugs. Before Warfarin my bloodpressure was sky-high very often. Probably had PEs when it was so high. I felt "icing" in my body for a couple of minutes. After warfarin the "icing" is gone and the bloodpressure is normal but i still have the same bloodpressuredrugs. I can monitor my bloodpressure myself.

Ask to have a selftesting machine like I have. I test every second day and follow my INR. In that way I can notice when the INR (how thick the blood is at the moment) is becoming too high or too low. Important to always be in range to avoid further damage caused by miniembolies or microcltos etc.

I wish you good luck to find a Specialist in Birmingham as I believe you need it!



Hey, Have you tried to get a copy of your medical records? That's the only way you're really going to find out exactly what the doctors have diagnosed you with (or what they suspect might be causing your medical issues)! What really concerns me is that they haven't switched you to Lovenox or some other type of blood thinner seeing that the Warfarin has failed you so many times. You really do need to seek out the help of one of the specialists listed on this site. You also need to be officially tested, or re-tested to confirm the diagnosis of APS. If you have high levels of antibodies in your blood, that could be why you're having a lot of clots while you're on Warfarin. If that turns out to be the case, you might need to be treated with an immunosuppressant that will reduce the level of APS antibodies in your blood. This will also help prevent clots from forming in the future. I hope you can find some answers soon. Please keep us posted!

Lure2 in reply to Hidden

Hi sirclotsalot,

I have the 3 antibodies and in high titres since several years. I am on warfarin since 4 years. I have not got any clots if I follow my INR and selftest and stay in the therapeutic range.

Have you been treated with immunosuppressants? How was it?


Hidden in reply to Lure2

I haven't been treated with immunosuppressant's, but I know people who have. They use chemo drugs to knock out the immune system in patients who have catastrophic APS. It completely removes the APS antibodies from the blood, but it also destroys the immune system. The use this in extreme cases.

My APS is managed by a hematologist. You asked about other illnesses. I was recently diagnosed with Schamberg's Pigmented Purpura and re-curring hives. I too have high blood pressure & high cholesterol. I was diagnosed with a heart murmur long before the APS diagnosis and had open heart surgery to replace my mitral valve with a mechanical one.

Regarding the self testing machine, I just want to mention they don't work for everyone. I tried one years ago but was unable to get reliable results. I brought the machine with me to the doctor's office to compare the lab draw with the machine. I was getting wildly inaccurate and inconsistent readings. I didn't want to gamble with my life for the sake of convenience. My hematologist contacted the manufacturer of the machine. It turned out that the anticardiolipin antibodies I have didn't work with the reagent used in the machine. Just a cautionary tale.

I do hope you find the right physician and I second getting a copy of your medical records. I keep very detailed files from every doctor visit.

I'm in the states so I don't have any doc recommendations.



HI there, it is very important that you are assessed by one of our recommended specialists as soon as possible, make sure you take along your history and symptoms to date, in bullet points. These three standard tests need to be done regularly: Preferably in a hospital setting so that the samples do not hang around. Also get them to look at y our Thyroid, D, B12 and Ferritin. All these levels can change and need to monitored. Let us know how you get on. MaryF

You may also like...