Is There Any New Research

[JanetL]

Hi. I am new here.  I have Primary APS and I want to learn more about the advances that have been made with this research. I have had three TIAs and 3 heart attacks, which the last one I had to have three stents put in to keep a main artery open. Any new information about this would be very helpful to me and my doctors.

[Manofmendip]

Hi Janet and welcome to our forum.

Where are you from, as this will help others help you?

Please take a look at our charity's website:

hughes-syndrome.org

Best wishes.

Dave

[JanetL in reply to Manofmendip]

I am from British Columbia, Canada. I have had Primary APS for many years. I have had 3 TIAs and 3 heart attacks which one has left me with 3 stents keeping one of my main arteries open now. My Beta 2 IAb levels are well over 200 and my Cardiolipin Ab IgM levels are well over 120. I have to have my blood thinned with clopidogrel and aspirin as the other drugs are not an option because of the cardiac issues. They keep my levels almost to the point of if I cut myself, I have to be careful because my blood does not clot fast. I have internal bleeding issues, and the Doctors here in Canada, do not know what to do with patients like me. We have a shortage of doctors here, and if you find one, he/she may decide to leave and you are back at square one. I know all about my medical condition and have to educate them on how to deal with this. I do have all the books on the website and other medical books which explain the complications of this syndrome. I have been in contact with the foundation before, when I was first diagnosed. I met a man, who worked with Dr. Hughes, who helped the doctor put the stents in after my heart attack at the Royal Jubilee Hospital in Victoria, British Columbia. He had said at that time, he did not know of any APS patient having 3 stents put in and he would contact the clinic then. I didn't get the mans name but he worked with Doctor Robinson, the cardiologist, at the hospital, at that time. I am looking for maybe some up to date information as I have been diagnosed as terminal. Maybe someone knows new things that would be good to try.

[Lure2]

Hi Janet,

I hope you will get the help you need.  Good Luck!

Best wishes from Kerstin in Stockholm

[JanetL in reply to Lure2]

Thank you Kerstin. You are all very helpful.

[JanetL]

I will try that. Thank you for your great idea.