A prof.or dr. Specializing in Hughes syndrome

[designer16]

Does anyone have a prof they see in France or any country in Europe easily accessed by train from London? You see I have to purchase my own medication-Clexane for my Hughes Syndrome. I live in the USA & every year I see Prof. Hughes he prescribes the Clexane for 1 year. The exchange rate for the pd. is high 1.55 US to 1 pd. --the Euro is much better 1 Euro is $1.14--.& when the medication is 7000 pd or more the exchange rate is important. I thought if I can see someone in Europe & get my prescription filled there I can save some money. I have asked the Lupus center also, but I thought I would ask my fellow APS friends.

Designer16

[cami]

hi i have just returned to the uk, had been living in France for 7 years, the french health system is very complicated, you cannot see a consultant unless referred by a GP or in an emergency...private or state! and it costs....! also France will not fulfill a prescription from another country...it must be French. i had an APS consultant at chu hospital in Limoges and a private rheumatologist......any questions please ask.

[designer16 in reply to cami]

I apologize if you get more than 1 reply, it keeps canceling. Thank you for the help. Is it the same if you are paying cash? Do you know another country that would be easier? Like Italy. As long as I can travel by train i don't mind. It is a $2000. Savings at least. Thank you designer16

[cami in reply to designer16]

hi, it doesnt matter how you pay...you have to be in the 'system' in france unless its an emergency..ie traffic accident and then if you are not resident you will get a very large bill to pay, because the government pay a percentage and then you have to have insurance on top, you get a card from cpam ( the medical centre of france) saying what you are covered for, for both hospital, and medication, you also have to have one to see a GP and pay him 23 euros! I really dont know about Italy, spain is similar to France. To be honest, I think you will find it hard to get another country to fulfill another countries medical prescription, i had trouble coming back to the uk getting my drugs from my GP as they were all called something different in france.

[designer16]

My hematologist suggested these but then decided to not give them to me because I was improving on the Clexane and because I have so many reactions to medications. Like I can take Clexane, but Lovenox makes my throat swell up. I tried several other trucks from the US but had reactions to them. I would love to make this simpler. Just about breaks the bank the trip to London & the Clexane being $11,000. Because of the exchange rate. Designer16

[designer16]

My hematologist suggested these but then decided to not give them to me because I was improving on the Clexane and because I have so many reactions to medications. Like I can take Clexane, but Lovenox makes my throat swell up. I tried several other trucks from the US but had reactions to them. I would love to make this simpler. Just about breaks the bank the trip to London & the Clexane being $11,000. Because of the exchange rate. Designer16

Reply

[NaggingWife]

Hi Designer - I might have an easier solution for you. Try Canada. The Canadian dollar is always weak, and although you can't take a UK prescription to a Canadian pharmacy, you might be able to find a consultant in Canada willing to prescribe it. It goes by enoxaparin in Canada. Dr. Hughes may even know of a British Consultant working in Canada (there are lots of them) who would be prepared to help you.

[designer16 in reply to NaggingWife]

I tried Canada but unfortunately they prescribe Lovenox not Clexane. They are similar but not identical.my throat swells with Lovenox. Designer16

[NaggingWife]

As per Salty, I was also going to say about Rivaroxaban. My husband was put on it and it's great. The only thing is, the consultant says that it is proven for venous clotting, but not yet for arterial clotting (not enough data), so it depends what type of clots you've had in the past. It is much much easier to use than Warfarin because you don't have to test and it only stays in your system 24 hours, so easier to adjust if there is an accident or something.

[designer16 in reply to NaggingWife]

Thank you for the information.I will check with my doctor and see if he will reconsider ordering it. Designer16

[chrissybell]

Rivaroxaban or Dabigatran (Pradaxa) - both worth looking into. In the UK they are about £1000 per year (obviously they only cost us £8.05 per month - prescription charge for those who pay). Rivaroxaban is manufactured by Bayer and Pradaxa by Ingelheim Boehringer - both now licenced for DVTs and PEs. Good luck!