Hoping for a little clarification

[JustLa]

I was diagnosed with obstetric APS (no previous thrombosis events) in 2017, but just focussed on getting my baby here safely. Since delivery (successfully) it seems my APS has amped up to a triple positive and I’m now experiencing a range on symptoms.

Last week a saw a local specialist (from the list in here) and he confused me with some of his comments, plus I’ve since had more questions.

Just looking for opinions of those in here-

•Apparently there is no point in testing my APS levels (IGG, IGM, LA, etc) again? I thought it could fluctuate and if I dipped in and out of the triple positive gang I’m lower risk than if I was persistent triple pos?

•He said you definitely don’t have lupus if test was negative, I thought you could?

•Is INR testing only for Warfarin users or could it give me a good indication of whether I need anticoagulants?

•Will hydroxychloroquine effect my general immunity negatively?

I totally understand that we are not medical professionals and will take any info to my specialist appointment at lupus centre London in a couple of weeks.

Many thanks x

[MaryF Administrator]

Hi, results can fluctuate, and I know after having a baby it is not unusual to flare for a bit, I know I did each time. Some do have seronegative Lupus, however if you are not being tested now, after fairly recent testing. I am sure in the future you will be tested again.

Do keep a full list of symptoms, and of course do get in touch with your GP and or the specialist should you become more unwell or experience a new symptom. Plaquenil did not suit me, (due to my mix of diseases and severe allergies), however my daughter is doing well on this. It is helpful for your up and coming appointment at the Lupus Centre, to have your medical history and symptoms in bullet points, plus any mention of relatives past and present with autoimmune disease or similar symptoms, plus any letters written etc. Best of luck, let us know how it goes. The Plaquenil or similar does not work instantly you have to be patient for a few weeks. MaryF

[JustLa in reply to MaryF]

Thanks MaryF, I will take a clear list and info with me. I can’t find my test results but I’m hoping they can access my medical records, would you happen to know?

You mentioned your daughter has APS too, I’m sorry to hear that. Would it be a good idea to have my son tested? Is it that common to pass it on?

Thank you 🙏🏻

[MaryF Administrator in reply to JustLa]

Please don't panic about the children, often children don't pass the tests, and he will not necessarily have it anyway, all my children are affected in way or another, and there is a close cluster of relatives with it, but this is not the same for every family. My children showed clear symptoms, so needed help. Regarding medical records and letters, ring your doctor's PA and ask for a copy and follow up with an email to the them. This way it may appear sooner. MaryF

[JustLa in reply to MaryF]

Great advice, thanks so much MaryF x

[HollyHeski Administrator]

Hi, further to Mary's points, yes INR is only a test for those on warfarin. I've been on hydroxychoquine for over 10 years and get on with it well.

They may trial you on the heparin or put you on warfarin, to see if this helps your symptoms.

As Mary said, go with a bullet point history, and a full list of your questions.

For me, once diagnosed as triple positive APS, I have not been tested again, although all my bloods are carefully monitored.

[JustLa in reply to HollyHeski]

Hi HollyHeski, it’s comforting to hear you get along with Hydroxy well. Have you had any adverse side affects?

Also, what blood tests do you have to monitor you?

Can I ask how being triple positive has affected you?

Thank you for your reply x

[HollyHeski Administrator in reply to JustLa]

I went many years without diagnoses suffering still birth, early hysterectomy, 2 x strokes & many TIAs, stenosis in 3 main arteries, one with live clot since 2004, once diagnosed, other than not being able to tolerate warfarin, my APS, has mainly been well managed.

So, as you can see, for me, the key is 'management'. I was so pleased after over 20 years of problems, to have the diagnoses with good anticogeration, I got my life back.

So being diagnosed triple positive made my life easier han other APS patients, especially when symptoms arrived I was taken more serious.

Still a lot more education for doctors are needed, as it still takes months to get the right help.

[JustLa in reply to HollyHeski]

Sorry to hear how much you’ve been through, but I’m glad you feel like you’re in a much better place with it now and that you survived all of that!

Can I ask which drug combination has been successful for you? x

[HollyHeski Administrator in reply to JustLa]

I am on daily clexane, clopidogrel, aspirin, pravastatin for APS and hydroxychoquine initially for sjogrens, plus bits for other things.

[JustLa in reply to HollyHeski]

Thanks very much for taking the time to help me out 🙏🏻