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What can I expect with Antiphospholipid Syndrome (APS)?
Autoimmune Diseases | Last Active: Aug 13 1:09pm | Replies (191)Comment receiving replies
Just diagnosed with Antiphospholipid syndrome and prescribed hydroxychloroquine a few months ago. I have not been able to see a hematologist yet. Referrals are not going thru and I was told the Drs office may be scheduling appointments as far out as 6 months in my area. Within a week of starting hydrxychloroquine I found out I had kidney stones and a blatter infection. Had to wait for a month to have kidney stones removed. Two procedures involving stents, anesthesia, and more antibiotics later I have no idea if there are side effects from hydroxy yet. I’m so tired and am less active these past few months due to changing health. I’m giving in to thinking one month after the last procedure I should be getting back to normal. The problem is normal was not the same the last few years as before getting the mRNA COVID shot. I was active and never felt like a couch potato. What’s next?
Replies to "Just diagnosed with Antiphospholipid syndrome and prescribed hydroxychloroquine a few months ago. I have not been..."
You will tired and exhausted not only from APS but also from the medications! There is not a lot of help regarding APS ! Listen to your doctor and ask about finding a support group! It is a very scary disease! Plus you need to be on a blood thinner !
I too developed Antiphospholipid syndrome after COVID & mRNA shot. I had both PE and DVT due to the lupus anticoagulant antibody. I have been on blood thinners ever since my event (fall 2021). After my hospital stay to treat the PE and DVT, I started with Eliquis, then had to go to Enoxaparin shots when Eliquis did not work, then transitioned to Xarelto (terrible side effects for me), and finally settled on Pradaxa, which I have been on for 1.5 years. Over the past year though, I have experienced debilitating joint pain, muscle weakness, brain fog, headaches, etc, and was just diagnosed with Sjogren's syndrome as well. I feel like I am living in a completely different body from 2 years ago, as I had no medical history prior, was extremely active, and my life seemed to change overnight. I have had to become a constant advocate for myself, and went from having the normal primary care providers to a slew of doctors I see regularly (hematologist, vascular specialist, rheumatologist). I feel your pain and so happy to find a forum with others dealing with these syndromes. It is exhausting and defeating.
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I have APS and so far I’m on warfarin and Plaquenil.Please check with your doctors because hyrxychlorquine /Plaquenil is not to treat Antiphoslipid Sydrome .Mostly treated for inflammation and joint pains when you have APS now I’m accepting my diagnosis because I’m in the medical field and also a healthy person.Be well .