Does being on Warfarin mean I will have no further problem with Hughes Syndrome?

[PGNYC]

I have a clot in my subclavian artery and have been diagnosed with Hughes Syndrome and have been on warfarin for two years, . Is it reasonable to assume I will have no further effects from my condition or is there still a risk of clots of other ailments even after being put on Warfarin.

[Manofmendip]

Hello

Well, sadly, I had a clot in my right hip while on Warfarin, so it is possible to have clots when taking it. I also suffewred from balance issues too. I am now on Fragmin injections and have much less symptoms on that than on Warfarin.

Dave

[CanaryDiamond10]

PGNYC: No, it is not reasonable to think it is over. The disease is either active or non-active. Some triggers are identifiable and some are not. You always have it. MD's manage the symptoms.

You're meds need to be checked quarterly as well as your body for symptoms so subtle you may not notice them, but your MD will be looking for them.

Dr. Hughes believes the disease runs in 3's. For example, down the line a few months or years, another disease in the family of autoimmune diseases will show it's ugly face; many having to do with thyroid. If you go to HealthUnlocked under thyroid and just read a little bit, you will see how many patients are dealing with multiple diagnoses.

This is a subject best addressed by your MD. If he is not familiar with APS; the Hughes Syndrome Foundation will help you educate said MD. They have a good library of educated opinions you can print off and bring to your next appointment. Ask your doctor if he could educate his department of rheumatology by printing the data and sharing it. Ask him to share any written information he receives with you. Do the same with your general practitioner (family doctor).

I'm glad to hear you are ahead of the game now, but beware... when you least expect it... the disease or another form of it will rear it's ugly head.

Good luck on your journey, PGNYC.

Warm wishes,

CanaryDiamond10

[Hidden in reply to CanaryDiamond10]

This is interesting. I read a book by Dr. Hughes and do not recall him linking APS leading into any other autoimmune disorders...can you let me know where you read this?

[Manofmendip in reply to Hidden]

Which book did you read? He has certainly said to me in consultations that APS can be linked to other autoimmune diseases, including thyroid conditions.

[MaryF Administrator in reply to Manofmendip]

With autoimmune disease I think once you have one there is a fifty percent increase in the likelihood of gaining another one. His books are an excellent read due to the accurate information contained in them. MaryF

[Hidden in reply to Manofmendip]

It is "Positive options for APS: Self Help and Treatment." I was incorrect..Dr. Hughes only wrote the Foreword, not the entire book. What I pulled out of this book was that it is highly likely to develop APS once diagnosed with Lupus, but that the opposite was not true...and the percentages were much, much less when it did occur. It seems to make sense to me.

If we think about it, why would one autoimmune disease automatically assume future/high probability of another? Unless it is affiliated with the underlying causes/symptoms that led to the clot/misscarriages/diagnoses in the first place.

I am certainly not a doctor, and do not want to come off rude in anyway. Sometimes posts can be very general in nature and would likely scare most people if they are not fully informed. Any other information you/he have supporting his comment of "another autoimmune disease rearing its face in the next few months/years" would be very helpful.

[Hidden in reply to Hidden]

Also, I just pulled this from the website:

If I have Hughes/antiphospholipid syndrome does this mean I will develop lupus?

No. Approximately 35% of people with lupus will have antiphospholipid antibodies, although not all will develop Hughes/antiphospholipid syndrome. The same does not apply to people with primary Hughes/antiphospholipid syndrome, and research has shown that virtually no patients go on to develop lupus.

Again, I am learning about all of this as much as everyone, so any other information will be helpful!

[Salty in reply to Hidden]

Pittlll, It is true once you have one autoimmune condition, you are at an increased risk of developing another, because autoimmune disease occurs due to a mis regulation of your immune system. Indeed, some people have MANY autoimmune diseases, eg 5, 6 or even 7. But, that being said, many people also only have one and you are correct that it is quite uncommon for patients with primary APS to go on to develop lupus.

[beccafullcircle in reply to Manofmendip]

I agree, I was also told by three different specialists that Hughes typically has a "friend" like Lups etc.

[Lure2 in reply to Hidden]

I do agree with Dave,

have books written by prof Hughes telling that there are three: Sjögrens, Thyroid and APS also perhaps SLE (Lupus) Lupus and APS are even more connected.

Best wishes from Kerstin in Stockholm

[Lure2]

I am on warfarin that has made a great change on me. I live in Sweden and can selftest my warfarin. That is very positive. You have to keep in the therapeutic range to be safe from clots.

But as Dave says it is possible to have a clot even on warfarin but I would say that if you can keep in range around 3.0 - 3.5 (we have all different blood and some of us have thicker blood) you can feel rather safe with warfarin.

Do get an APS-doctor and perhaps buy an own Coaguechequemachine.

Best wishes from Kerstin in Stockholm

[margaretjo]

I also have clotted on warfrin 3 PEs but unfortunatly for me i have also clotted on clexane.

[Lure2 in reply to margaretjo]

Did you have a stabil INR range when clotting? How often did they Control on lab? Did you have difficulties to stay in range?

Best wishes from Kerstin in Stockholm

[Sandrapanda]

@Kerstin, RE: the Coaguechequemachine, is that a finger stick machine? I was encouraged when I read you use that machine, since I had read on the APSFA site that self check finger stick machines are not safe nor accurate for measuring INR in APS patients. (see link here apsfa.org/fingerstick.htm).... that incorrect? They are quite outspoken about it and claim it is very dangerous. I would be A LOT happier if I could arrange to check my own INR for sure! I am not currently anti-coagulated...my Dr. is putting me on lovenox and aspirin in another month so that I can continue plans to get egg donation and hopefully become be pregnant after 5 failed IVF trials. I am worried, as it seems dangerous to be pregnant with this disease, but all of my docs feel I am up to the task. They do not seem concerned that I am not currently on any thinners. However, my leg has been hurting quite a lot this week on the side where my DVT occurred 10 months ago (lots of pulsing/chronic pain and tingling in the toes). I went to the ER for ultrasound and they said there is no new clot present, so I am still dealing with that and wondering what to do. Thinking I can take an aspirin and see if that helps. Anyhow - was curious about the self check machine. That would be a Godsend if I end up back on warfarin! I just thought they were not OK due to what I read on that link. Thanks!

[Lure2 in reply to Sandrapanda]

They say so, yes. Especially for those with APS and also Lupus Anticoagulant (not Lupus but an antibody to detect APS). I am Lupus Anticoagulant and it is a discrepence between the lab vein value and my own machine-value. i have tested many many times with the hospital that the difference is the same between the two values. It is so far (over 2 years now). The hospital and doctors trust me 100 % as they know me and for me it is a Godsend as you say.

This is Sweden and all persons on warfarin around the Stockholm City can have a testmachine for free. We do it in the finger but in hospital in a vein at the lab.

I am sure if you have good doctors your pregnance will be OK. Others know of these things here on this site. Before warfarin I took baby-aspirin.

Good luck from Kerstin in Stockholm