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Sticky Blood-Hughes Syndrome Support
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Aps

I just wanted to know if you all are on blood thinner? I have aps and had a pulmonary embolism, I'm not on medication.

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Have you been seen by an APS specialist? See Pinned Posts on the right hand side of the page for details. Many (most?) specialists will prescribe some sort of anticoagulation for people with APS and who have had an 'event'.

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Hi there.

Who is managing your APS and where are you from?

I fully agree with Tim's advice.

Dave

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I'm from Denmark. I haven't got a specialist. I spoke to the doctor at the hospital and my symptoms had he never heard about. I'm tired often, forget a lot, I have pain in my arm since I got sick and sometimes in my calf's. I'm happy too hear from you. Going to my doctor today to find out if I'm forgotten.

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Hello I can see that there is knowledge about the condition plus Lupus within the University Hospital of Copenhagen, this would be a good starting point. MaryF

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Also more information in this hospital with this doctor: V Bladt - ‎2004 - ‎Cited by 5 - ‎Related articles

(1)Department of Hematology, Aarhus University Hospital, Aarhus, Denmark.

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Please keep at it my dear! Most people are on blood thinners! My family is from Cooenhagen, Denmark! I was there years ago and would love to return! Please go to a Hemotologist or Rheumotologist! My best wishes to You my dear!

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Hi there,

I am from Sweden and have had APS for several years now. The most important thing with this illness is to get an APS-Specialist. It has to be a Doctor (often a Rheumatologist or a Hematologist) who really knows what APS is about. We have too thick blood and we feel rather ok when our blood is properly thinned.

You have to read about this illness and get as much info as you can. I have Pulmonary Hypertension and leaking heartvalves. I had very high bloodpressure before I was put on Warfarin. Have you tested postivie to all the antibodies incl Lupus Anticoagulant?

This site is very good so stay on here as you can ask questions here.

Read "Sticky Blood Explained" by Kay Thackray. It is not quite new that book but she writes about all the symptoms and she has APS herself. You will not find the latest drugs for APS but good reading about how it is to live with this very rare illness.

Good luck to find a Specialist somewhere in Denmark. The Neurologists we have noticed here do not "get" what APS is about - too thick blood.

Best wishes from Kerstin in Stockholm

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Not everybody is, but firstly other than hello and welcome? Also who diagnosed your Hughes Syndrome/APS and where are you located as you need a specialist with the knowledge regarding this disease, we will try and help you further when we have this information. MaryF

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If it were me I would at first if you can't get to see someone who specialises in Hughes syndrome speak to your local doctor you probably need to have a blood thinner APS or not

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Hi again,

I guess you have been to your Doctor now as it is late evening here. Please tell us what he suggested as you need some drug to thin your blood. It is really a struggle to get a Specialist. Many of us have also had to struggle to get a diagnose. Stay on here!

Kerstin

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She wanted too find out if I have lupus at first. I'm getting very frustrated cos don't feel they listen to me. I will try and keep you updated but I'm not on medication.. She said they must have decided that in the hospital. She didn't at all say she would contact the and hear what they thought. Thanks to you for all your help so fare 😊

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How long ago did you have the PE?? Even while they wait to see if you have Lupus they should be putting you on medication. It is unusual to actually have Lupus AND APS according to Prof Hughes. Its normally one or the other that causes the symptoms but some people can very occasionally and unusually have both. However if you have had a clot you should be taking some sort of anticoagulation even if it is only aspirin until things are sorted out. Please therefore take matters into your own hands if your Doctor is not listening to you and call the Hospital yourself and demand to speak to the Doctors that were treating you there. Do not give up until you get answers. Unfortunately we have to be persistent with this condition and do things for ourselves.

Let us know how you get on.

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As APsnotFab is saying do not give up now. You have got a Diagnose that is good (but not good of course).

If I were you I would take a "baby-Aspirin" (75 - 100 mg Aspirin). I had to take that to prevent from TIAs Before i started Warfarin and it helped a couple of years with my neurological symptoms. It is a low dose and that should it be and you can also take it together with food but that tiny amount will no doubt not give you stomachtrouble.

Here we buy it without prescription from a doctor. Try it!

Kerstin

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There is a lot of controversy out there regarding APS diagnosis and criteria. So, in addition to lack of knowledge on some doctors' parts regarding our disease, there is also a lack of trust issue. These are reasons why we all recommend seeing a doctor who comes recommended by other APS patients -- they know the disease is real and they are experienced in tailoring the best medication for each patient.

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My doc rang me this morning telling me she had checked my patient records and she's contacting the hospital to find out why I'm not on medication. I will let you know how it goes but I think I found a doc that listen to me 😁😊 yet again thank you all for your comments 💖

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Take the advise from ALL the above

Copy the info from this site - understand it {ask questions from people from here }

Take the literature to your appointments and don't leave till you are sure you have their attention and they know that you are on top of your dis-order and want to know just what they have for a plan of action .

I have done this and still do .

you have to be your own best advocate here.

there is a wealth of experience on this site and people here have been threw the same circumstances that you are facing.

we are here for you -- it is scary , but once you are comfortable with your knowledge you will come across to the doc's as a person with direction for them ..

best of luck and keep us posted or if you need help

Casey and I

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