Finally got the Hughes diagnosis!

[Zoebarber22]

I'm looking for any hints or tips from any young people diagnosed with Hughes.

12 months ago, when i was 20, I had a completely random DVT (knee to belly button) at the time the doctors found I had a large clot and my iliac vein was being crushed by an artery (May-Thurner syndrome, which I now have a stent in.

I had always been a fairly 'well' person up until this point (apart from all the symptoms of Hughes I ignored.)

In the week leading up to the actual clot I had a blinding migraine everyday.

This week, after 3 different & positive Lupus Anticoagulant tests I have finally been diagnosed and am on lifelong warfarin.

I was just wondering if there were any other young people/were diagnosed when young with Hughes?

Did you have a clotting incident before you were diagnosed? Did you notice symptoms before the clot or did you just tick every box afterwards?

I just feel like I need some kind of Hughes community!

Thanks!

[Ozchick]

Hello and welcome! In a way you were 'lucky' to get the clot and be diagnosed straight away. Many of us had to jump through hoops (and a multitude of Specialists) to get a diagnosis. Once you are properly anticoagulated you will be surprised at how well you will be feeling. There is a wealth of information here and a good place to be if you are just starting out with APS.

[Yllek]

Hi and welcome

I was diagnosed this year at 38 but we can trace things back to the age of 23 with me. I never clotted then but had various pregnancy problems which we now know was due to APS. Amongst over things I had several TIAs which led to my diagnosis this year. I now generally feel very well and symptom free when my INR is in range (symptoms return if to low).

Xx

[Mia02]

Hi Zoe

I was diagnosed with Hughes Syndrome in my early 20's, but not until after 3 DVTs which were progressively getting worse each time (on the third occasion I had a multitude of clots running between my calves to my groin). I too am on lifelong warfarin. I've never had any clotting problems since, and have managed to live a very full active life. I've never tried to have children though, but I was always advised that if I wished to start a family I would need to plan for one appropriately by injecting myself with heparin daily instead of taking the warfarin (once pregnancy was confirmed). The issues I've found which could be related to Hughes are visual migraine problems, flashing lights but without the head pain. The flashes can become so intense that if I don't take pain killers asap I can go completely blind. Overall though, if you take good care of yourself, regularly getting your INR checked, eating healthily and exercising regularly, problems can be manageable for most. Although, when I first read many letters on this forum many appear not to be so fortunate. I'm sure you'll find all answers to any questions you may have on the Hughes website. Good luck 😊

[Zoebarber22 in reply to Mia02]

Hi, thanks for your reply!

So sorry it took 3 DVT's to get a diagnosis, that must have been awful!

I can gladly say that I haven't had a single migraine since being on warfarin, do they still effect you?

[Mia02 in reply to Zoebarber22]

On occasions I can still get visual migraines. But this I believe isn't due to the warfarin, I think it's due to a symptom of the APS. Warfarin I've always found to be a symptom-free drug to take. Just check your INR and live a healthy life! 😊

[Lure2 in reply to Mia02]

Eye-symptoms are symptoms of APS. When you get those "

[Lure2 in reply to Lure2]

"blind moments" suddenly have you thought of raise your dose of Warfarin. It could be that you are too low in INR. Just a thought as I had those symptoms but never again after Warfarin.

Kerstin

[Manofmendip]

Hello and welcome to our friendly forum.

Glad you have got a diagnosis at a young age, many have struggled for years to be believed and to be tested.

Best wishes.

Dave

[GinaD]

I was diagnosed at age 45, though the symptoms began when I was 30. Many of us go on to lead perfectly normal active lives once our blood is send to the proper level with the proper medication.

[Dcaraveo]

Hey Zoe! Welcome!! 🤗 I'm 22, and have had the diagnosis of Hughes syndrome for about 7 months. I haven't had a blood clot yet and I'm scared if it will just happen one day😁.

[Zoebarber22 in reply to Dcaraveo]

Hello!

Apparently getting a diagnosis when young is a good thing, so lucky us?

I think you should be okay if you're anti coagulated correctly. What do you take? 😊

[Dcaraveo in reply to Zoebarber22]

Haha yeah, I guess lucky us.

And I'm taking Plaquenil and baby aspirin.

[Zoebarber22 in reply to Dcaraveo]

What is Plaquenil used for?

[Dcaraveo in reply to Zoebarber22]

It is used to treat lupus and joint inflammation with the added benefit of helping with sticky blood.

[MaryF Administrator]

HI and welcome, I am pleased you have a diagnosis, you will learn and awful lot on here and feel supported, do ask us any questions that you feel you need some sort of answer to. I am guessing that you are in the UK, hopefully you have a Hughes Syndrome/APS specialist. MaryF

[Debbweb01]

Welcome Zoe to this amazing forum with great people who give great advice! Couldn't have doe it W/O them! The administrators ar amazingly competent caring and amazing people along with Kerstin! I've had this disease most of my life only to be DX'd after loosing my left leg due to an arterial clot! My first clots in mid 70's! At age 24! Had leg clot that traveled to my lungs! Always sickly as a child with hospitalization S and coming home without a DX! I'm so sorry u have this, but be happy to get a diagnosis! Yes u do feel better with the proper treatment and proper anticoagulants! Good Luck to you and GODSPEED!!! Please let us know how you do ok? Thx!!!

[Zoebarber22]

Thank you so much everyone for your replies!

Its so good to speak to real people with the same illness as me!