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blue-kat

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  1. could statins useful for people w protein S def & other blood clotting disorders? http://bit.ly/czhI6X (daily telegraph article) statins are dirt cheap compared to Rivaroxaban + other new anticoags. wonder side effects of both stack up.
  2. how are you doing Orangefoot? more time gone and no further with new treatments. anoterh 2 yrs is long time to wait....
  3. could recurrent headaches possibly linked with protein S def?
  4. thanks for encouraging replies. keeping active doesn't pair very well with moderate - severe ME/cfs. Using mobility aids is a lifeline, and stops me being housebound. I do as much as possible and frequently overdo it and end up flared up/ back in bed. it's good to hear other protein S people are helped by compression garments, and are getting on with it and coping. I was really struggling to get the class 1 leggings on, utterly exhausting. I've now got some class 2s which are easier, but still a big effort, but will persist.
  5. does anyone have info on when ximelagatran or dabiagatran will be prescribe-able on the NHS? NICE approval of dabiagatran:- http://www.medicalnewstoday.com/articles/122706.php are there any other new anticoagulants ? - thanks
  6. hi James thanks for your reply. Post Thrombotic Syndrome: I understand there's no going back, the damage is done, but I'm wondering what the outlook is, regarding symptom management, pain reduction etc? how do others here deal with the pain? thanks
  7. I found the first lump in my leg during pregnancy- my daughter has celebrated her 18th birthday last week. blood clots problems have been progressive, I've have semi-inflamed phlebitis for years, and have become increasingly disabled. I also have moderate + ME/Chronic Fatigue syndrome + misc other health problems, but have felt more disabled by leg and more recently arm pain. I can't tolerate anti-inflammatories ( I get AI-induced asthma and stomach pain - even from AI spray), and it's not practical to lather myself daily in AI gel. Apart from persanten retard, haven't had much treatment. I've been searching and pushing for diagnosis for years, I found this site a few years ago - thank you ! I've now finally been diagnosed with PSD, and wondering what to expect regarding treatment? is it too much to hope to dissolve some of the many clots in superficial veins in my legs, less pain? management of risk factors? My eldest son is off to New York tomorrow, I've drawn his attention to the flying advise on the main Protein site. I suspect my daughter may have PSD too, as she's had episodes of mum-diagnosed phlebitis after train journeys. is PSD linked with sluggish circulation? daughter gets purple toes, and I get from puffy fingers and 'claw' hands. sorry for so many questions !
  8. I've been taking Persantin Retard (dipyridamole) for 16 years.
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