Sticky Blood-Hughes Syndrome Support

Hydroxychloroquine

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

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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

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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

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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

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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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