I’m a newbie

[Kikitabs]

Hello everyone I’m new to the group but not new to the condition, just thought I’d say hi 👋🏼

[Monkeymate]

Greetings kukitabs , welcome 😀an what brings to the forum ??

[HollyHeski Administrator]

Hi welcome - let us know a bit more about you? Are you in uk? Have you got your Hughes/APS in control? Etc....

Again glad youve joined us.

[Kikitabs in reply to HollyHeski]

Hello, I’m from London, have had APS diagnosis since 2011 aged 24 where I had a large stroke and they found APS was they cause, I also have raynauds, an extra rib, right sided weakness. After a mix up with medicine I also had a heart attack’s in 2016.

I am on warfarin (lifelong) range 3-4, hydroxychloroquine (unsure on spelling), 2 iron tablets a day as well as b12 injections every 3 months.

I struggle with my mood, tiredness, lack of patience and a truly appalling memory day to day, as well as pain in my knees and wrists mainly.

I’m truly a positive person, I have my down days as I’m sure we all do, if I’m having a bad aps day I probably not leave the house 😂. These were the cards that I’ve been dealt and I could be miserable about it, but if I did that I wouldn’t live my life... I pick myself up and go day by day.

I have APS it doesn’t have me xx

[Kikitabs in reply to Kikitabs]

Oh an something called libman saks— a leaky heart valve 🙄

[MaryF Administrator in reply to Kikitabs]

It sounds like you are doing well considering, I hope you regular appointments with a good consultant keeping an eye on your vitamin D and Thyroid as well as all the other things. MaryF

[jetjetjet in reply to Kikitabs]

Welcome to our group - sounds like you have the mind set . not much we can do about that .Every day can be a challenge , most are with me BUT like you so wisely stated you can let it ,i have been dia. since 2009 .

[Gmagolf in reply to Kikitabs]

You are truly an inspiration

[Mermaidatheart]

Hello and welcome!

[Monkeymate]

An hi to you too 🧐

[Clairey25]

Welcome to the Sticky blood group. You’ll get lots of honest advice on here. Glad to hear you are remaining positive. That’s pretty much the stance I take too. I also have a hat trick of other autoimmune conditions (hypothyroidism, vitiligo and pernicious anemia.)

[Wittycjt]

Hi Kikitabs welcome I’m in US. I have similar history as you but I was diagnosed at 53.

[Lure2]

Hi and welcome! I am from Sweden but have been on our site for at least 6-7 years.

My advice to you is to have good control of your INR. An INR of 3.0 is rather low. I must be on a higher INR, around 4.0 to get rid of the symptoms. I have had very high bloodpressure and also have 2 leaking heartvalves. Hope you have a good Specialist who understands that our sticky blood has to be properly and also stable anticoagulated.

Best wishes and hope you stay with us.