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What can I expect with Antiphospholipid Syndrome (APS)?
I’ve recently been diagnosed with APS and have been prescribed hydroxychloroquine. I have a history of a pulmonary embolism. I’ve read the side effects of this medication and it truly has me afraid to take it. What can I expect with this condition and medication? I know everyone’s body is different and reacts to medication differently, I’m just trying to get some insight on what others might be experiencing. Thank you
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Curious to find out how many have been newly diagnosed with this condition since receiving a Covid vaccine. Anti phospholipid antibody syndrome condition
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1 Reaction@raeanna Welcome to Mayo Clinic Connect. Everyone here shares their experiences with their own health condition. Most of the tips and experiences are very helpful. Can I ask why you asked the question about covid and APS? Do you have APS?
A fully vaccinated with moderna covid 19 vax acquaintance has been recently diagnosed with apps at age 45 previously in perfect health and no family history.
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1 ReactionI’ve been taking hydroxychloroquine for @5 years and never had any side effects. I believe that, with aspirin, it has reduced my symptoms greatly. I do have other autoimmune issues, but I’m 84, and really just try to live with all the nuances. Good luck to you all .
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2 Reactions@raeanna
I had the APS autoantibodies show up in 2017 and 2019 bloodwork but do believe the Covid vaccine (I had the 2 Pfizer vaccines in 2021) made me worse. I had pain at the base of my skull and dizziness right after the injections and after the 2nd shot, I started to get heart attack like chest pain and difficulty breathing a week or two later. I was 51 at the time. The chest pain and breathing issues went on for 4-6 months afterwards. I started to get abnormal EKGs after the vaccines, too (didn’t have them before). I then got the COVID virus in 2022 and believe I now suffer from long COVID (extreme fatigue, breathing difficulties, etc.).
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1 Reaction@raeanna
P.S. I have read that the COVID vaccines have caused neurological issues and endothelial/microvascular damage which may be behind the blood flow/breathing issues people experience. I have small fiber neuropathy plus APS autoantibodies which make me at higher risk for blood clots and stroke/heart attack. My mom had heart disease and diabetes plus lupus/RA/Hashimoto’s and fibromyalgia and died of a heart attack at age 67. The genetic risk factors for me are there but never knew if my mom was diagnosed with APS.
I was diagnosed in August 2020, so I already had it....I did get the J&J Vaccine, which I regret, but my hematologist says it did cause any changes in my blood work...who knows...by the way, the J&J is the one that can cause clotting...the same problem I have! They stopped giving it shortly after I got it...Ugh
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1 ReactionThank you. Keeping you in my prayers. Can you tell me what kind of treatment you are receiving and do they check you regularly for clots? 🙏🏼🙏🏼🙏🏼
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1 ReactionJust wanted to mention, my hematologist is a specialist with this disorder and tells me Warfarin is the only effective treatment for APS.
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2 ReactionsFor 20 yrs Ive had APS, 13 DVTS. Ive been on Warfarin, with inr at3.25 (Dr wants me at 3) Ive also been on Fondaparinux 7.5mg injections. I ve broke through both with DVTs. It seems that blood Thiners are not working, none of my Drs have known anyone with this problem. I was referred to Mayo Clinc BUT 'they do not have a thrombose clinic anymore'. So, now have been referred to a specialist in Orlando. One of my Drs said 'Im sitting on a time bomb'. Has anyone one else had this problem or has heard of this? Now, Im taking Xeralto. which is contraindicated for APS. Im also taking 2 aspirin a day on my own.