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Sticky Blood-Hughes Syndrome Support
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Query about rheumatologist

Hi everyone,

I have noticed a number of people talking about seeing a rheumatologist and although this seems like a foolish question, I am wondering how a rheumatologist functions as part of the medical team for patients with Hughes Syndrome. I have my family doctor and then the haematologist that determined to put me on daltaperin as my inrs were too unstable on warfarin. Also wondering if someone could also explain the relationship with metatarsal injuries. I am in Canada; not sure if ant other Canadians are on this site and have any insights. Thank you.

7 Replies

Hi, we do have a few Canadians on here! I enclose a couple of informative links re metatarsal fractures: hughes-syndrome.org/about-h...


A rheumatologist will have the knowledge regarding a wide range of autoimmune diseases and very useful indeedm if they of course are clued up on Hughes Syndrome/APS.

There is one name on this list: apsaction.org/



Thank you Mary.


Don't know about Canada, but In New Zealand Rheumatologists feel they get those with APS by default. They are not that interested in you, and in fact, Derek has been "Discharged" by his after only 18 months with him. He has had APS for 5 years but didn't see anyone except his GP for INR monitoring, for 2.5 of those years. He suffered CAPS as a direct result of that lack of specialist cover.

He is now having to go see a Hematologist as his Platelet Count has dropped to a level at which the Dr is becoming concerned. His main symptom of APS is Thrombocytopenia.

Who ever you are under, make sure they understand APS fully, and allow you to tell them when you are receiving treatment for anything else, in case you need cover for anticoagulation.


Thank you very much for taking the time to respond. I also have been under primary care of gp who is very good. That said, the target for my inrs were between 2-3 which I could never stay within and continued to get debt. 10 months ago I ended up in hospital with a mesenteric thrombosis and ischemic colitis at 49, so saw a haematologist for third time in 8 years, so just trying to figure it all out. Was initially diagnosed with aps in 2007 but other than going on warfarin for lifetime, nothing really changed even though I continued to get DVts. So since the big events of last year, I have been switched to daltaperin but am just trying to wrap my head around it.

So sorry to hear about caps and wish you smoother sailing ahead.



Since you continue to have DVTs have you considered if your INR range should be higher?

My brain is what affected most with APS. I was getting MRIs every 3months in the beginning. Each time more white matter appeared or was changing. My neurologists increased my INR from 2-3 to 2.5-3.5 and tested every two weeks instead of once per month. Next MRI showed no changes in brain damage and I'm visiting both neurologist and rheumatologist every 6months instead of every 3.



(I'm not a Canadian, I'm from the US but hope to try to answer)

I don't think it is a foolish question. I have been under the care of my hematologist for my APS and Factor V Leiden for a year and a half (since I was diagnosed after suffering with a history of DVT). I am on warfarin since. For the past 3 years, I have had major problems with leg and foot ie: plantar fasciitis, spontaneous fracture of metatarsal and tibia, torn tendons in foot and ankle, with no apparent cause that has shown up. On my last hematologist visit, he referred me to a rheumatologist because he said there may be another underlying autoimmune condition that he has not seen on his tests and blood work.

Saw the rheumatologist last week who has done very extensive blood work, even repeating some of the tests I've had with the hematologist, and also an x-ray of my lower back. Waiting for the results.


Hi Mozelle,

Sounds very good!

If it is possible stay with that doctor; we need a Specialist and a Rheumatoligist is the Doctor who should know about APS as this is a reumatolgical illness.

Best wishes to you from Kerstin


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