Is it possible that we who have APS are witnessing the dawning of awareness that our "flares" are similar to COVID cytochrome storms?
Will we see Dr. Hughes' work in coming up with the answers to treating both? Namely anticoagulation...
Will antiphospholipid antibody, etc become a household word soon?
I know I will remember this day.
I have wondered this same thing.
Yes, it's too coincidental to miss it.
Especially when you read about those children dying of Kawasaki syndrome in New York.
Me too. I've thought... this sounds like CAPS..and the blood clotting issues being reported upon regularly..do t k ow where it leaves us patients...
There are a number of people drawing attention to this currently and keeping me in the loop, I will let you know if I hear anything further. MaryF.
Thank you! This is going to get exciting!
Mary I read about someone’s doctor telling her that the vaccine might be dangerous to APS people. Have you seen anything like that?
Some, but not everybody can be sensitive to such things, I have never had a Flu Jab as my system would not cope with it, my last GP picked up on this clearly over time, this is definitely a talking matter with your best consultant or GP when the times comes. Keep well. MaryF
I was saying something similar on the Lupus site. I have a feeling this may end up pushing some research and a better understanding. It would be a positive out of a really sad situation.
For me, I’ve believed for a while that a latent infection is the cause of my autoimmune issues... I think this is just another piece of the complicated puzzle.
Hi, I’m signed up to your forum too as my mother has had one positive response for the APS test. Both of us have vasculitis in different forms. On our forums such as Behcets people are asking the same thing. Let’s hope they are talking to the top medical authorities in our communities. X
Yes. I feel kind of guilty because I am quite hopeful that this was bring awareness to APS and hopefully that awareness will bring more interest and effort into finding treatments/cure for APS. Could be a silver lining to all this corona pandemic and hardship and loss people are having.
My thought has always been that my APS is a result of what the doctors thought was a severe case of mononucleosis (Epstein Barr virus) when I was in 10th grade in 1983. There was no blood test taken back then and the doctors assumed it was mononucleosis. I had a fever of 103.7 for 10 days. I had a photographic memory and since the fevers I only have a small portion of my photographic memory capabilities left. I think that virus altered my immune system permanently. I was diagnosed with APS December of 2017. It was found after a positive ANA and also triple positive for antibodies. I have no known thrombosis history so the Mayo Clinic has given me the formal diagnosis of APS and is treating me prophylactically to prevent my first thrombosis.
When I first read about covid19 I too thought that this virus may be causing CAPS.
Hi - I got my diagnosis at Mayo - undifferentiated mixed connective tissue disease with lupus, aps, raynauds and sjogrens. I had a retinal hemmorage before going to mayo - but because i didn't have a heart attack (!), I was told to take 2 baby aspirin a day to to ward off thrombosis. May I ask if you are taking baby aspirin or another anticouaglulant?
I am currently taking 81mg baby aspirin daily, 200 mg hydroxychloroquine daily, 5mg eliquis twice daily
Hi Piscesdreamer,
I do hope you today have a steady contact with a Specialist of all those autoimmun illnesses you are diagnosed with. You are also triple positive. Important to have someone who fully understands our sticky blood
I do. I have a hematologist, rhuemetologist, vascular specialist, cardiologist, and my GP.
I think you meant to reply to Celiahirschman (as I only have APS)
♡
Wow, fascinating. I think a number of those "good old days" viruses are in that category. I too, had mono on my wedding and couldn't go on my honeymoon.
I also got poison ivy every summer when I was young and I've always thought that might have something to do with it.
After my stillbirth , categorized as " preclampsia"... but still no diagnosis .
Not til 10 years later and got a huge clot in my left leg. Finally an APS diagnosis.! And the proper treatment.
If any of you hear of studies where diagnosed APS cases are needed to determine if there are any similarities or links to COVID-19, I'd love to hear about it. I'm all for participating in anything that might shine some light on a path toward better treatments or cures for either or both diseases. Stay safe, everyone. Stay strong.
I have had the very same thoughts. I had virus's all the time before I had my clotting episode and ended up on warfarin. The clotting episode happened when I had a nasty virus. As soon as I was diagnosed by the wonderful prof Hughes and put on life long warfarin twenty plus years ago I have not had another virus since. I don't want to think I am protected and get cocky about all this and come unstuck but it has crossed my mind. My thinking is that there are lots of elderly folk dying in care homes and we know that a lot of elderly people are coagulated. It would be a very easy exercise for the government to find out if those dying in care homes versus those not affected were coagulated or not. Could it be that simple ? I hope prof Hughes is onto this theory if it is.
Stay safe all
Kaz xx
My thought is I am glad I am on a blood thinner. It appears it helps with the clots appearing in the lungs from the virus. I have been reading some really good articles on it.
Please see Dr Mike Hansen’s you tube videos on autopsy studies. I believe he has three on his channel mentioning this
Pregnancy and APS / Lupus
APS and myasthenia gravis
Hydroxychloroquine and Primary APS
APS and Flu Vaccinations
Contraception, APS and Lupus
