hello everyone, this is scary stuff

[dwarfer1974]

i was told i have sticky blood syndrome last year after 2 tias and a 1 big stroke, which left me prayized on my left side, ive another 2 tias since, my wants to clot all the time time, ive just been told that the blood veassles on one side of my have narowed, im am scared of what the what lies a head for me my inr is watched very closely my target is 3.5 at the mo, im on target at the mo, i am worried all the time

[MaryF Administrator]

Hi firstly welcome, secondly who is managing your care? MaryF

[Michelle_Tower]

Hi there, I've had aps for almost 20 years. I find warfarin is a little tricky,stay calm. My dr. put me on a 325 mg aspirin as well. You might want to find out if there are options like that for you. Keep stfong and good luck. Michelle

[Lure2 in reply to Michelle_Tower]

Hi Michelle,

That is rather unusual, if you have only APS, to have both Warfarin and such a high range of Aspirin also. It should be enough with Warfarin, if it is kept in range (rather high for us APS-sufferers usually). If the Warfarin is not kept in range it does not thin your blood and you may have more clots and PEs.

I was on Asprin (75 mg) to begin with and my neurological issues disappeared but after some time I was worse . My Hematologist here in Stockholm tried with 360 mg of Aspirin. Did not help and she had not thought so either but we tried. I had to start Warfarin and after that i am ok.

The trouble with so much Aspirin is that you can have stomachproblems. I had that.

Do you have a Specialist for your APS?

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

I wrote wrong. The double dose was only 160 mg (not 360 mg). Are you really on 325 mg of Aspirin?

Kerstin

[Michelle_Tower in reply to Lure2]

My Primary Doctor is in charge. She is at MGH in Boston, MA. I have seen a neurologist, pulmonologist, a rheumatologist. I have never seen a heamotologist.

[Lure2 in reply to Michelle_Tower]

Neurologists we have found on this site (I have been here some years now) do not "get" what APS is about. The important thing is that you get a Specialist of APS who knows what to look for re symptoms.

Most of us have a Rheumatologist as this is a Rheumatological illness or (and) a Hematologist as it is also a blood-disorder.

Have you read "Sticky Blood Explained" by Kay Thackray. I have it in pocket. I have also had APS for 20 years but diagnosed in 2002.

My Specialist says it is very important that we are in range with the Warfarin. I agree totally with her. I selftest with an INR of 3.2 - 3.8.

Keep well

Kerstin

[Michelle_Tower in reply to Lure2]

Hi Kersin, I just bought the book you mentioned on amazon. Even though I have had aps nearly 20 years, I have never had a person or community I felt comfortable to share with or believe in. I think the US doesn't treat their patients the same . I would love to learn more from all of you.

Thank you Michelle

[Lure2 in reply to Michelle_Tower]

So glad you say this!

Stay on here and you will know a lot of helpful, kindhearted and knowledable people. I think you may have some difficulties in the US but that may depend on where you live.

You are very welcome to ask and put your own questions here!

Kerstin

[Lure2]

If you have got Warfarin and have an INR of 3.5 you should not have to be worried. The problem is that the INR changes very quickly. My INR does that so when I have an INR under 3.0 I have to take a Fragminshot.

If you have got a Specialist who understands APS and you also are looked after closely with your INR you should not be worried. Those two things are the most important for us with this illness.

What therapeutic level has the Consultant put you on?

Best wishes from Kerstin in Stockholm

[tim47]

Hi

We have all probably been pretty worried from time to time since having these clotting incidents, and being diagnosed with Hughes - and not without some reason as we do need looking after.

I just want to try to re-assure you to some degree by telling you that I have had Hughes for well over forty years and I still have a decent quality of life. I have been on warfarin for most of that time and, until I got the right target INR (3.8 to 4.0 for me and set by Prof Hughes) I too had stroke, TIAs and PEs.

Make sure that you have a doctor who understands Hughes, and the likely need for a high INR target, and the need to make sure you stick withing your safe limits. Discuss perhaps what other precautions might be appropriate- for example having fragmin injections available if your INR drops below a certain level- as many of us do.

The key to this is, as others have said, getting a doctor who truly understands Hughes caring for you.

Best wishes,

[dwarfer1974 in reply to tim47]

thanks for the reply tim, im waiting to the doctor thats manging all this, its scary stuff.

[diane1428]

Bless your heart. I remember very well how terrifying it can be I was only diagnosed two years ago but had it apparently since I was 18. I have a lovely rheumatologist and a brilliant hematology department that have said any problems contact them at any time and they will help me. Put my mind at rest I can tell you . We can live with aps even though at times it can be difficult. Chin up and go see your doctor.

My inrs have to be between 3.5 n 4.0 can't function below.

Wish you the best of luck. Diane