Help for clotting on multiple anticoagulants...

[StarryUkulele]

My first dvt was due to a port - My jugular completed clotted off, as well as all veins in my left arm filled with clot. I was treated with warfarin for 3 months. Port was removed.

2 weeks after warfarin stopped I clotted again in the same arm. Put back on warfarin.

3 months later I clotted in the other arm on therapeutic warfarin. INR Range was raised.

A few years later I clotted back in the left arm, on therapeutic warfarin in

the higher range. Ultrasound also showed chronic clot that was not previously there - believed to have clottted on and off without knowledge.

A year later I developed a PE, and was eventually found to have had clots in both transverse sinus veins in the brain. I was then placed on Arixtra. Two years later I had my recent clot in a different vein in the left arm. This frightens me as on I've had clots in varying location within 6 years, and on what is to be believed to be sufficient treatment.

The plan is to continue on the 2.5mg Arixtra dose I clotted on. Are there other treatment options for people with APS? I've also developed severe joint pain around the time this last clot formed in addition to autoimmune GI-flare. Basically, a whole lot of inflammation at once. I do have migraines, but these as of now are under contorl. I don't want to continue clotting on treatment. Any references to information I could pass along to my doctors would be helpful. They are not particularly familiar with many Hughes Syndrome cases.

[Storky]

Hi - You dont give any other information of dx other than that you have APS. Also from the drug you are on (Arixtra) you are obviously in the USA as this is an injectable Heparin.

I am surprised that you were only given warfarin for three months after a thrombotic event as even with someone who has a clot who does not have APS the normal is to keep them on warfarin for 6 months.

Its really difficult to say as you could have other autoimmune conditions such as Lupus (for instance) which could be playing a part in all of this as Hughes quite often has other conditions that run along side it - have you been tested for anything? Dependant on what conditions you have and what other contributing facts there were would decide what drug therapy you should be on. I would suggest you ask for a full screening if that has not already been done.

[jessielou]

Hi

welcome and glad you found us! Sorry to hear what brings you here and that you been through so much.

I agree with Hughes patient, you really need further tests and more appropriate treatments.

Hughes syndrome foundation website has loads of info and advice!!

I'm sorry can't help a lot, but we here if you need a moan, rant or unload! Hopefully someone else will be along with more info for you!!

I really hope you get things sorted.

Take care big but gentle hugs sheena xxxxx