Sticky Blood-Hughes Syndrome Support

I need help! Prof. Khasmashta treated me with Clexane & since then I have tried other meds, that are not working. Anyone else

I am seronagative with a strong history. I suffer with some MS symptoms & I use a wheelchair. I saw prof. Khasmashta in April & he prescribed Clexane. It was a miracle & I was able to walk better, it actually felt easier to walk. I felt like if things progressed I would be out of the chair in a few months. I ran out of Clexane & they claimed Lovenox was equal. It just did not work the same. I was put on warfarin it worked OK, but I had a hard time keeping the INR constant. In addition my legs & feet swelled some much I could barely walk. I have stopped the warfarin & I am using the Lovenox waiting to start heparin. Is anyone else on heparin? I spoke to the FDA who explained to me that any biological drug will work differently & because of trade secrets I will not find out the differences. I will try to get Clexane from London. Has anyone else had these problems, and if so what med. are you taking for Hughes?designer16

4 Replies

I am on Fragmin 10,000iu 0.4ml prescribed by Prof Hughes. I was taken off of warfarin and find the Fragmin which is a LMW heparin much better.


I'm on lovenox works great for me. I weigh 46 kg and take 60 mg twice daily. Lower doses did not work for me. The usual recommended dose for acute thromboembolism is 1mg/kg twice daily. I also take plavix--an anti platelet drug-- in addition, without it I did not have optimal symptom control.


I was prescribed Clexane after major clotting in Tinzaparin. Many Doctors and Consultants have tried to take me off Clexane and put me back on Tinzaparine, all due to cost of Clexane.

Every time I ask if the Doctor in question will take responsibility for more major aterial clotting if they risk putting me back on Tinzaparin, they usually agree to leave me on Clexane. However, during my last stint in hospital the consultant marked my file as 'refused medication' because I would not take Tinzaparin.

I cannot take Warfarin as this has failed for me in the past.

I am so lucky that I have an amazing GP and they prscribe Clexane for me which I inject twice a day.

Many Consultants have admitted tha the reason they want me of clexane is 'purely cost'. This is so wrong as the cost of Intesive Care time and emergency surgery far outways the cost of Clexane.

I have researched this and Clexane is actually ten time more expensive than Warfarin.

Fight for Clexane and keep battling, it works for me.


If you read the GP prescribing guidelines it states clearly that cost must NOT be the over riding consideration and that it must be whatever is in the over riding patients best interest. Therefore if there is medical evidence why you should be on one medication over another this should be written in your notes. Then if you are prescribed another drug "purely on cost grounds" and something happens you would in my opinion have a case against whoever was prescribing.

My consultant has now been very crafty. He has written to my GP asking very nicely if they will continue prescribing my Fragmin and stating this is because I am allergic to warfarin. Just in those few words he has given the reason why I can not be transferred onto the cheaper option and the GP will know that I will be put at risk if I am.


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