Has anyone got any more information o... - Hughes Syndrome A...
Has anyone got any more information on the attached link? sounds promising, just wonder if it is as good for Hughes sufferers.
Hi Les
Very interesting, we knew it was coming and now NICE has approved it. In therory warfarin users could now go over to it. But for me I will wait until its been in use for some time to see the results. According to reports in new zeland its been rushed through to fast and has caused big problems. Google it and its not all good news (but are any drugs)
Advantage for me would be that I could eat brocolli, kale, brussell sprouts which I can not tolerate with warfarin / vitamin k. I self monitor with coaguchek and thats not a big deal.
Thanks for posting, lets keep an eye on this one!
Regards
Garry
Only yesterday my GP asked me if he could put me forward to our local health authority for the new drug as i am on life long clexane as i couldnt get a stable INR with warfrin. Apparantly the HA is dragging their feet and wont cough up the money so the local GPs are trying to get as many people as possible who would benifit from the new drug. They are hoping it will be approved within 6 to 12 months. It would be ideal for me then i wouldnt have to inject myself every day and there would be no risk or osteoparosis (i have enough problems with my bones) So im keeping my fingers crossed and am more than happy to help with the pressure if it will get the money for the drug
Hi les
I feel cautiously optimistic on this. I will feel happier when its tested and approved in Aps, I hope it proves to be safe and well tolerated by Aps patients.
I have a yo-yoing inr, so would be great.
From what I've read and understand i think it could be a while.
I take far to many meds already and would want to know they safe (well as safe as any drug can be) with other meds.
So good news les, a brave new world!!
Hope you well today,
Take care gentle hugs love sheena xxxx 
Hi Les - here is the copy about the new oral anticoagulants from our new website (work still in progress)
New oral anticoagulants are currently being developed, such as Dabigatran, Rivaroxaban and Apixaban, which seem set to replace warfarin in the future. However, they are not yet available for Hughes syndrome patients.
The new anticoagulant drugs appear to be safer than warfarin and, like heparin, do not require the patient’s INR to be monitored.
Dabigatran has already been licenced in the UK under the trade name Pradaxa, and is being used to treat patients with atrial fibrilliation following extensive trials.
The new anticoagulants are not yet considered safe for Hughes syndrome patients as extensive trials have yet to be carried out. Trials are being developed at a number of centres, but the results of these will take a few years to be published and assessed.
The new anticoagulants will not be replacing heparin in pregnancy as the effect on unborn babies is unknown and, therefore, will not be tested.
We are involved in a proposed multi-centre trial called RAPS - Rivaroxaban and APS but are still waiting to get full funding. The new drugs will not be considered safe for APS patients until some trials have been carried out. The main concerns seems to be the lack of monitoring and the fact there is no reversal of the drug.
Hi KateH,
Your detailed comments are appreciated. I will look forward to the trials and new info as it becomes available.
Regards
Les
Hi Les
I asked the same question a few days ago. It sounds an interesting drug though I would read some of the answers to 'Pradaxa/Dabigatran' as it is used in the States as some members of the forum from there said that it doesn't come without its own risks.
Hi Les
I spoke with my INR nurse and my GP but was told because I have had a PE I could not take Pradaxa. It is currently mainly going to be used for AF, or heart patients, or so my GP led me to believe. Hope this helps
Smiles
Lesley
Thanks for all the comments, I am sure we all waiting with bated breadth!
