Sticky Blood-Hughes Syndrome Support


I always read with great interest all the massages left on this blog. I have Hughes Sybdrome , Leiden V and protein S deficiency. Been on warfarin for 22 years. Had two strokes. Had twice temporal arteritis and myalgia. Now my rheumatologist want me to start on hydroxychloroquine twice a day and 4 times a year 30 days on prednisone. To keep the myalgia under control. My heamathologist is in touch with my rheumatologist. As my INR can be one day under 1 and a week later over 8! Quite annoying. I used to self test but my doctor said it was pointless to continue as at the warfarin clinic they can keep a better eye on it. I am just wondering if any of you have been on the same combination of medication. Happy Easter to everyone. Kind regards Hedwig

4 Replies

Hi Hedwig,

Is the Rheumatologist the one with the knowlege of autoimmun illnesses and an Expert of Hughes Syndrome? It is a must to have such a doctor.

Best wishes from Kerstin in Stockholm


Thank you Kerstin for your quick reply. Yes my rheumatologist is an expert and that's why my heamathologist referred me to him. The rheumatoid arthritis I have is directly related to Hughes according to him. I am just worried about the steroids as I was on it before for three years and blew up from a size 10 to a size 16! Horrid. I was just wondering if anyone else has been prescribed the same combination and how they are feeling. Thank you again. Happy Spring. Regards Hedwig


I am on hydroxychlorine 2 a day for my RA and Fibromyalgia and helps the APS but am just on 10 mg daily prednisolone.Why just a 30 day 4 times a year for you Hedwig-68


Morning, I am on wafarin I self test as the clinic only Want to test me every week or two, as my INR can change in that time, I self test inbetween.

I know after years I change my own Warfarin dose by 0.5mgs if necessary, never anymore than that, if it needs more of a change I phone them and they advise me what to take.

They seem OK with this I usually email my results as they take forever to answer the phone.

Make sure your coagucheck machine gives the same results as the clinics. Today i am going to self Test as I feel it is too high feel anxious etc I also test if I have a headache

I also take Hydroxychloroquine which has helped my balance problems and clumsiness.

I also see a rheumatologist mainly due to having oesteoneucrosis, she is quite happy to leave things to the haematologist

I don't know if any of this makes sence but hope it does

Just another point I inject with Clexane when INR is less than 3.0

I am so lucky that I am not on steroids


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