Glad to be here!

[Brenty54]

I am so glad I happened on this community. I look forward to connecting with people who are coping with this condition and finding ways to live a vibrant life.

[MaryF Administrator]

Welcome, feel free to tell us about your patient journey to this point, best wishes. MaryF

[Brenty54 in reply to MaryF]

Thank you. I had a PE about 2 years ago, but I never new that I was diagnosed with APS until today! I saw it on the health portal of my Dr.'s office. Anyway, I have felt crummy lately, and I just want to feel better with more energy.

[Wittycjt in reply to Brenty54]

Geez... what a way to find out have you called to speak with em? About it and directives?

[HollyHeski Administrator]

Hi I see you have just joined, welcome - I presume you have Hughes/APS?

Tell us more about yourself?

[Brenty54 in reply to HollyHeski]

You can read my reply to MaryF. ☺

[Brenty54 in reply to Brenty54]

Yes. I have been diagnosed with APS.

[KellyInTexas Administrator]

Very cool profile pic!

[Brenty54 in reply to KellyInTexas]

Thanks! My wife drew it.

[KellyInTexas Administrator in reply to KellyInTexas]

I think you might be located in the USA?

[Brenty54 in reply to KellyInTexas]

Yes. Central Florida.

[KellyInTexas Administrator in reply to Brenty54]

Unfortunately, one of the top APS specialists in that state that I actually had a consult with passed away a few weeks after I saw him. He was a solo practitioner.

Have a look at the website

ghic.world/

To get a comprehensive overview of this disease.

I’m very glad you’ve found us also. You will start to really think about you family history, and past experience after digesting the information. Take your time listening to Dr Hughes.

My San Antonio Texas team sent me to London Lupus Centre in early 2017, and he was kind enough to see me. ( he had technically quit seeing new patients, but co consulted on my case with His colleague Prof Natasha Jordan.)

In the meantime have a look under pinned posts here on this forum. ( off to the right or at the bottom.) There is a post put on by administrators re: proper minerals / vitamins and a note about having your thyroid checked. APS’ers very often are low in Vitamin d, Fotate, ( B complexes) . Have a read.

Please feel free to check back with me .

[Brenty54 in reply to KellyInTexas]

Thanks so much This is good. I will get on it.

[Wittycjt]

Welcome! Is this a self portrait? Quite the R tist

[Brenty54 in reply to Wittycjt]

Yes. My wife drew it.

[GinaD]

Welcome! Though I must clearly state that I wouldnt wish the condition of APS on anyone, but getting that diagnosis opens the door to an effective treatment and a functional future. For many -if not most -of us, diagnosis is the key. But finding the effective treatment is the next key. For me, it was warafrin. For others it is heprin or another injectible. Others -asprin... plaquanil. Human clotting cascade and the immune system activation systems are complex and exactly which med produces the best results is a very individual thing.

Also, the initial trigger/s which aggravate the immune reaction is still a bit of a mystery, but many of us see our symptoms improve and our immune reactions calm when on a gluten free diet. My APS blood markers went from very high to what one hematologist called "boring" when I gave up gluten. And then, after a consult with Cleveland Clinic Function Medicine and an elimination-then-reintroduction diet I found I am also allergic to cashews. Cashews!? Whod'ave thought?! And now my energy level and mental focus are sharper then I can ever remember!

Again welcome!

[Wittycjt in reply to GinaD]

Great response Gina...concise and to the point...plus very informative for newbies

[KellyInTexas Administrator]

You state in your introduction paragraph you look forward to “ connecting , learning more, tips, etc, to help live a vibrant life.” ( paraphrased.)

Gina is a shining star example. She has been the ,” poster child” of responding astonishing well with food elimination. Certain foods ( substances s are known to be inflammatory- especially with auto immune diseases.

Medicine is really exploding with research in this field right now- from micro biota and the gut biome to actual non gluten celiac disease ( wheat intolerance which causes inflammation in joints- or even blood vessels. )

Sugars as well...

Mast cell activation syndrome- aps patients are quite prone to this- can trigger migraines and a host of allergenic responses.

Lots to think about or delve into.

[jetjetjet]

Hi Brenty and welcome to the land of the sludge bloods - at what age were you when this all started - with me it was when i was 53 or 54 some 9 years ago and lord knows how long i had it before we found it . but just curious .