What can I expect with Antiphospholipid Syndrome (APS)?

No, but my daughter has the same thing. Could be that one of my parents had it and didn’t know it. It’s rather rare.

I’ve been on hydroxychloroquine for 15 years, and I have never had a blood clot. I believe the hydroxychloroquine acts like a blood thinner. I also saw a hematologist just to ensure that I was on the correct medication and she agreed that it’s fine. I hope this helps you.

Hello, I see a Rheumatologist Nurse Practioner for my Lupus and APS. I was diagnosed by a Rheumatologist, MD, at Mayo Clinic, Rochester.
On Coumadin. I have been having difficulty staying within my goal range of 2-3 with my finger stick results. I am either way low, that requires shots to raise my blood Coumadin level, or, way high, eg. 1.6 to a 4.4, 1.6, 4.0, and 3.6 respectively.
Has anyone else have had similar experiences lately? My next INR is this Tuesday , June 6th. I just hope I am not lower than 2.0. If I am, I have to take the shots. The needles are long and thick. And, are inserted into my abdomen. I require approximately 3-5 shots per week.(One daily) .Has anyone else been having trouble keeping within their goal range? T.Y. in advance. Pat

What is D. E.S. exactly?

Usually you are put on a blood thinner. Usually the drug of choice is Coumadin. (Warfarin ,the generic)
Plaquenil, or hydrochloroquine, the generic is used to treat the inflammation caused by the lupus. I hope this helps! Pat

Diethylstilbestrol (DES) is a synthetic form of the female hormone estrogen. It was prescribed to pregnant women between 1940 and 1971 to prevent miscarriage, premature labor, and related complications of pregnancy.
My mother was prescribed this drug in 1957 after a miscarriage. It was later discovered to cause reproductive cancer in offspring as well as other defects. Since no doctor has been able to tell me how I might’ve gotten APS, I was wondering whether there was a correlation between the APS and this now banned pharmaceutical.

For the passed few weeks my INR is low and then the following week it’s high .Have been in the range 1.6 to 3.4 I do understand how frustrating it is My hematologist just up my warfarin a few mg up .Have been on Heprin injections but now I’m only increasing the warfarin.I worried every Monday morning why. I have to test .I believe we’re either going over our points of 10 or the meter is not functioning correctly.Well ,just monitor your intake of your mcg foods in Vitamins K.Good luck Tuesday .

I have a "Coumadin" Cook book in the mail..used from ebay..cheap 4 Dollard, and it looks very good!
Thank you for your note!
Pat

I have antiphospholipid syndrome and MFTHR gene mutation I am struggling with a lot of the side effects and I want to know if anybody else out there has one or both of these autoimmune disorders and can give me some advice? I'd also really just like to connect to people that have similar problems.

Hello @katmorganus , you may notice I moved your discussion about Antiphospholipid Syndrome to this existing discussion:
- What Can I Expect with Antiphospholipid Syndrome (APS)?
https://connect.mayoclinic.org/comment/906055/.

I did this so you could read others' experiences with APS and meet members like @paktoledo, @mskeith, @kimbersue and @nugget84.

@katmorganus, you mentioned wanting to Connect with others who are experiencing similar side effects as you. If you are comfortable, do you mind sharing what some of your side effects are?