What can I expect with Antiphospholipid Syndrome (APS)?

Posted by sunshine71 @sunshine71, Nov 23, 2022

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 yoh

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Hello Pat I have The Coumadin/warfarin cookbook It’s the guide of healthy meals when taking Coumadin .I have the fourth edition but I think there are recent edition .Amazon has them and it’s ny Rene DesmarianMD AAnd Greg Goldenand Gail Beynon RCS also check Dr H Mayer has many .It actually help me when I’m not sure of the mcg in my meals .Quite affordable too .Be well

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Have you tried other blood thinner beside Warfarin? My daughter takes Xarelto and it helps. I also keep her stay away broccoli, peas, spinach or any vegetable can caused blood clots. When she is on Xarelto, she can’t take coumarin. She needs only taking blood test for every 3-6 months . Check with Hematologist for this medication if that would work for your daughter. Take care!

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@nicholas94

Hello Pat I have The Coumadin/warfarin cookbook It’s the guide of healthy meals when taking Coumadin .I have the fourth edition but I think there are recent edition .Amazon has them and it’s ny Rene DesmarianMD AAnd Greg Goldenand Gail Beynon RCS also check Dr H Mayer has many .It actually help me when I’m not sure of the mcg in my meals .Quite affordable too .Be well

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Thank you! Pat

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@nicholas94

Hello Pat I have The Coumadin/warfarin cookbook It’s the guide of healthy meals when taking Coumadin .I have the fourth edition but I think there are recent edition .Amazon has them and it’s ny Rene DesmarianMD AAnd Greg Goldenand Gail Beynon RCS also check Dr H Mayer has many .It actually help me when I’m not sure of the mcg in my meals .Quite affordable too .Be well

Jump to this post

Thank you! Pat I found the used book on e-bay for a good price..4th edition.Pat

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Great !Try to measure all portions on the plate and follow the MCG amounts as you know by now we’re allowed 10 points of vitamin K .1 point =10 mcg by the end of all your meals you should used up all your 100mcg or less .Good luck .

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Hi dear friends,
I was diagnosed with Anti -Phospholipid Syndrome after having a seizure like activity. I have a history of miscarriage 2 years ago and is on BP medication T. Trandate 100 mg since then. After the seizure I went to my mother country India and diagnosed with APS and Lupus Anticoagulant positive. There is no history of thrombosis. On MRI brain it is diagnosed as CNS vasculitis secondary to APS. My SLE was normal. I'm currently taking Immuno suppressants, Anti seizure medication, BP tablets, HCQ and steroids and Calcium Tablets. I also has a Mitral valve Prolapse and going to start T. Repace 25 mg. I'm really worried about my disease condition and please give some advise about these.
Thank You
@ammukutty.

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Are you not on a blood thinner?

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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?

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@kevisit

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?

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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 .

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