What can I expect with Antiphospholipid Syndrome (APS)?

Hello all my APS friends .Hope everyone are doing well I would like to know whether anyone is taking both Plaquenil and warfarin for Antiphoslipid.I have been on Plaquenil for7 months and I’m thinking of dropping it and just stay on my warfarin.Plaquenil was prescribed by Rheumatologist and warfarin was hematology.Thank you all your posts are so helpful to me when I’m frustrated.All be well.

@nicholas94 May i ask why you want to stop using plaquenil? Is it causing problems? I found some good information that talks about stopping plaquenil.

https://www.drugwatch.com/hydroxychloroquine/side-effects/#:~:text=Stopping%20Plaquenil,side%20effects%20to%20go%20away.
Have you spoken with your doctor? Does she have any advice?

Hello everyone, my 14 year daughter has just been diagnosed with APS (likely Lupus as well) and has a PE. We are in the UK, and she really wants to speak to any other teenagers, as she feels so alone. Just getting to grips with it all... any tips recommendations, anything most welcome..

My true sympathy...I think it's worse to have a sick child than to be sick yourself.

I think that the (American) Arthritis Association's patient support website, called "Inspire," has a group just for teens. Maybe she could make some connections there.

I wish I had more to offer...Hugs to you and your daughter!

Thank you annewoodmayo, that's very true - I wish it was me not her! Thanks for your recommendation of the group - but I cannot find find it, could you possibly send me a link? Thank you x

team@member.inspire.com

Sorry, I am not great at tech. Try the url above? Keep me posted. 🙂

Or try
inspire.com
? Again, sorry bout low tech skills.

@cornwalluk I’m so sorry about your daughter. I can’t imagine how difficult it is for her and you.
I don’t think that MayoClinicConnect has a special group for teens with autoimmune diseases. Your daughter is welcome to post on this discussion and I know that members would respond to her. We’ve had many young people come here looking for help. I would encourage her to try.
I also found this autoimmune site that can help with support groups.
https://autoimmune.org/resource-center/patient-support/support-groups/
Do you think this would work for your daughter?

Hello everyone.Sorry for the delay reply .My reason for stopping Plaquenil is because I’m already taking high dosage of warfarin daily.It was a trial but now my Rheumatologist said it’s too early to see changes .The testing to check your eyes every 6 months is too much .I just wanted to see if anyone is taking both and if they have any change.Thank you all and it’s sad when children have this Be well everyone

My son is 50 yrs old, excellent health, very fit. Out of the blue he had a stroke with the clot in the cerebellum. He has recovered, but is on blood thinners and the hematologist says some tests indicate anti phospholipid syndrome. He is getting further tests to confirm. Any info on treatment, prognosis ,etc is appreciated. Doc says it’s auto immune