I was diagnosed with APS just today by my incredible rheumatologist. I am a 39 year old male with Psoriatic Arthritis, and had what was considered a cryptogenic ischemic CVA three months ago. Upon reviewing my labs from the time of my stroke, my Dr. noticed that I tested positive for the lupus anticoagulant antibody. After a second round of labs, and another positive result, he determined my DX. I was very upset, at first, by the thought of this disease; having had a stroke has been stressful enough without the new added fear of clotting at any time. However, with time to process this, I am so thankful to know now what likely caused my stroke, and how easy it is to treat and prevent future occurrences with the use of anticoagulants. I am shocked, however, that it has taken three months, and countless physicians reviewing my case, for someone to finally catch that I have this syndrome. I’ve read that 1/3 of stroke patients under 50 present with APS. One would think that would be an automatic suspect for the genesis of a stroke in a patient as young as myself. Greater awareness of this disease is necessary within the medical community, especially in the specialties that treat stroke patients, namely cardiology and neurology. Leave it to my Rheumatologist to have found it- I always tell him his job is to solve medical puzzles! Thanks for the informative video, and for your work to understand and treat this disease.
I am a 37 year old male who is very active and of average build and healthy weight, I had a DVT approx a 8-9 months ago and the doctors could not work out why I had it. I have now just been diagnosed with Antiphospholid Antibody syndrome I echo the comments made by “Be Rad” this disease needs more awareness
Amazing Dr Hughes! Read about your discovery of this! I had a TIA and 11 days later had a stroke of the thalamus, eighth nucleus apparently, in 2018. Dr Hughes, I have had high anti- nuclear antibody titers, first discovered in August 2020 after a known tick bite. Titers for antinuclear antibodies are 1:1280 and 1:5120 discrete nuclear dot Pattern on all tests, the last being performed by EXAGEN. I think they use an automated system so I got a higher titer because of that. I understand most laboratories will stop at 1:1280 on dilution, and that the higher titer on EXAGEN Avise test is a greater number because of its specificity and automation, I believe. All extensive Auto antibodies testings have been negative until getting the highly sensitive Exagen AVISE test which showed positive anti-phosphatidylserine/prothrombin IgM and IgG. My stroke was presumed to be from high blood pressure, moving from pre-diabetes to mild degree of diabetes, and elevated cholesterol. I understand that all of these conditions contributed to me having a stroke. Now that I have this diagnosis, with negative on related analytes, including low likelihood of SLE currently, would you please comment on the type of specialist I should consider for the presumed anti phospholipid condition. I also had an equivocal anti-RNA POL III IgGs I have a very large family and two children of my own. I am interested in knowing to help my family and myself. I believe there is also some component positive for me for factor V Leiden. Would you kindly recommend the type of specialist/specialists I should seek I am from the United States if you could recommend anyone in particular who has the best knowledge I would travel also. Thank you in advance for replying. I would greatly appreciate it!
Thank you for sharing your story. The best way to find doctors working with APS is to look at forums as individuals will be able to provide location specific details.
Its an absolute nuisance of a disease. I was diagnosed with APS at 18 along with a DVT and I am and always have been a healthy athletic guy. Found out Xarelto wasn't working/conflicts with Toxoplasmosis ?? and now I'm on warfarin. Already having some side effects such as fatigue and bleeding.
I'm right there with you... Diagnosed with APS after getting wounded in combat at 25, been dealing with it for over a decade. Was able to hide it for a long time while on Xarelto (Coumadin didn't work on me for long) but it's gotten to the point where I'm taking Enoxaparin now... Which is working much better, but was part of what forced me into early retirement. Along with major physical injuries over the years, my physicality is all but gone. From super badass to verified cripple... it's been a hard pill to swallow. Keep your head up buddy.
My neurologist diagnosed me with APS when I experienced a TIA at age 42. Coumadin caused bleeding, so I just continued with high doses of aspirin. 5 years after my TIA, I had a heart attack. Now, my rheumatologist has me on Xarelto that I can barely afford since there is no generic option. Are there any other effective treatments for APS?
What an incredible, incredible man
Absolutely! And so humble. Often feel his efforts go so under-recognised.
Very interesting talk... can’t believe, this is THE Dr. Hughes. 👍
I was diagnosed with APS just today by my incredible rheumatologist. I am a 39 year old male with Psoriatic Arthritis, and had what was considered a cryptogenic ischemic CVA three months ago. Upon reviewing my labs from the time of my stroke, my Dr. noticed that I tested positive for the lupus anticoagulant antibody. After a second round of labs, and another positive result, he determined my DX. I was very upset, at first, by the thought of this disease; having had a stroke has been stressful enough without the new added fear of clotting at any time. However, with time to process this, I am so thankful to know now what likely caused my stroke, and how easy it is to treat and prevent future occurrences with the use of anticoagulants. I am shocked, however, that it has taken three months, and countless physicians reviewing my case, for someone to finally catch that I have this syndrome. I’ve read that 1/3 of stroke patients under 50 present with APS. One would think that would be an automatic suspect for the genesis of a stroke in a patient as young as myself. Greater awareness of this disease is necessary within the medical community, especially in the specialties that treat stroke patients, namely cardiology and neurology. Leave it to my Rheumatologist to have found it- I always tell him his job is to solve medical puzzles!
Thanks for the informative video, and for your work to understand and treat this disease.
Thank you for sharing your experience! I'm.sure this will help others!
I am a 37 year old male who is very active and of average build and healthy weight, I had a DVT approx a 8-9 months ago and the doctors could not work out why I had it. I have now just been diagnosed with Antiphospholid Antibody syndrome I echo the comments made by “Be Rad” this disease needs more awareness
Amazing Dr Hughes! Read about your discovery of this! I had a TIA and 11 days later had a stroke of the thalamus, eighth nucleus
apparently, in 2018.
Dr Hughes, I have had high anti-
nuclear antibody titers, first
discovered in August 2020 after a known tick bite. Titers for antinuclear antibodies are 1:1280 and 1:5120 discrete nuclear dot
Pattern on all tests, the last being performed by EXAGEN. I think they use an automated system so I got a higher titer because of that. I understand most laboratories will stop at 1:1280 on dilution, and that the higher titer on EXAGEN Avise test is a greater number because of its specificity and automation, I believe.
All extensive Auto antibodies testings have been negative until getting the highly sensitive Exagen AVISE test which showed positive anti-phosphatidylserine/prothrombin IgM and IgG.
My stroke was presumed to be from high blood pressure, moving from pre-diabetes to mild degree of diabetes, and elevated cholesterol. I understand that all of these conditions contributed to me having a stroke.
Now that I have this diagnosis, with negative on related analytes, including low likelihood of SLE currently, would you please comment on the type of specialist I should consider for the presumed anti phospholipid condition. I also had an equivocal anti-RNA POL III IgGs
I have a very large family and two children of my own. I am interested in knowing to help my family and myself. I believe there is also some component positive for me for factor V Leiden.
Would you kindly recommend the type of specialist/specialists I should seek I am from the United States if you could recommend anyone in particular who has the best knowledge I would travel also.
Thank you in advance for replying. I would greatly appreciate it!
Thank you for sharing your story. The best way to find doctors working with APS is to look at forums as individuals will be able to provide location specific details.
Its an absolute nuisance of a disease. I was diagnosed with APS at 18 along with a DVT and I am and always have been a healthy athletic guy. Found out Xarelto wasn't working/conflicts with Toxoplasmosis ?? and now I'm on warfarin. Already having some side effects such as fatigue and bleeding.
I'm right there with you... Diagnosed with APS after getting wounded in combat at 25, been dealing with it for over a decade. Was able to hide it for a long time while on Xarelto (Coumadin didn't work on me for long) but it's gotten to the point where I'm taking Enoxaparin now... Which is working much better, but was part of what forced me into early retirement. Along with major physical injuries over the years, my physicality is all but gone. From super badass to verified cripple... it's been a hard pill to swallow. Keep your head up buddy.
I was diagnosed with APL, what does has to do with my swollen legs and pain in legs, any advice??
Please discuss this with a haematolgist or rheumatologist - you would require a full clinical examination.
My neurologist diagnosed me with APS when I experienced a TIA at age 42. Coumadin caused bleeding, so I just continued with high doses of aspirin. 5 years after my TIA, I had a heart attack. Now, my rheumatologist has me on Xarelto that I can barely afford since there is no generic option. Are there any other effective treatments for APS?
We can't give medical advice however you could pose this question to your rheumatolgist. Thanks for sharing your personal story.
What can I eat? Recipes please😱