Sticky Blood-Hughes Syndrome Support
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What do I do, I need clexane because my blood is not thinning?

Prof. Khasmashta put me on Clexane & it was finally getting better. I saw the dr. Here in the United States & he wanted to keep me on the injectable for a bit longer. Clexane is not FDA approved in the U.S. the same manufacture makes Lovenox for the U.S. Lovenox is not the same-I started having reactions. I started having more stiffness, trouble walking, my legs & feet swelled. I had kept one injection of the clexane just in case. I took the clexane & bounced back. I told the doctor. He decided to start on the warfarin. I am taking Arista (injectable like clexane ) & warfarin. After being on clexane for a month, 2 days of warfarin & Arista my INR is 1. They told me it should be at least 1.4-1.6. I go tonight for another test tonight. I am once again getting worse. The stiffness in my legs, my neck hurts, headache, unclear thinking, etc...the prof. Said - it matters how you feel not what the test say---I feel terrible. If I can get the professor to write a prescription, how can I get it the clexane mailed to the United States. Any suggestions. Do I just stick it out until the warfarin thins my blood. I almost feel like my body is fighting it. I wish I had the Clexane.


2 Replies

In the UK Doctors have to prescribe an unlicensed drug that is not available in the UK on whats known as a "named patient basis". That means bring it in specifically for that patient. I cant believe that in the USA you dont have a similar system. Can you contact the FDA or whatever agency deals with the import and licensing of drugs and ask them what the system is?


I thought Lovenox and clexane were the same drug just different names.

You might find you need a much higher INR too. Most of us find we need an INR above 3 to feel well. This can be a bit scary for Drs who are used to the "normal" warfarin patient.


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