I am very sorry to hear of your current plight and also your very long history of serious illness. I know a number of UK lupus patients with lupus related kidney disease. They are treated by a nephrologist along with their rheumatologist. The usual drugs used to treat nephritis are Prednisone, Imuran, Cellcept, Cytoxan, depending on need and then if all else fails Rituxan, all in various combinations. Obviously it's hard to say why you have only had Prednisone. Rituxan treatment is usually tried only when all else fails.
Maybe your best option at this point is dialysis. With end stage kidney failure from whatever cause, dialysis becomes necessary. The very sad fact is that for some people no amount of drug therapy stops the progress of the disease.
From all I have read and experienced first hand , I don't think that treatment options differ much between the UK and USA. Certainly UK lupus specialists are of international renown and expertise. There are several lupus centres of excellence. If you don't happen to live near one, choices are limited and you might have to apply for special permission to get treatment in another part of the country if it isn't available in your area. It can be hard to change GPs too.
But every UK resident is entitled to free healthcare at the point of delivery regardless of nationality, employment or income. There is a flat fee for most prescript
ions but by purchasing an annual 'ticket' which will cover the cost of all medicines, prescript
ion costs are dramatically reduced, ludicrously low by USA standard, and many groups of people are entitled to free prescript
ions, such as everybody over the age of 60.
There is also the option of taking out private health insurance which gives you much speedier appointments much easier access and treatment, usually in more luxurious surroundings. Most people with SLE can't take out private insurance though.
Private treatment is usually by the same specialists as work in the public sector. The doctors at the private London Lupus Centre are the same as work with the NHS at their specialist units and some also work at St Thomas'.
Since all residents are eligible for health care everybody is entitled to be registered with a GP and to see a specialist you have to be referred. Of course some GP's are useless for anything, most kno,w little about
lupus and a few are very good. Same for some specialists. If you haven't been seeing doctors for many years things have changed a lot in the past 30 years, out of all recognition. You do have to have a referral to a specialist from a GP.
Going to the USA for treatment would be prohibitively expensive. Just as a single example of USA costs, the cost of my non urgent day surgery hernia repair was $15,000 a few years back. I was able to get an appointment with my GP the next day and with the surgeon the next week and could choose when I had the op. It would have been very different in the UK with a wait of many weeks to see the specialist and waiting maybe for months for the surgery since it wasn't an emergency But we were very well insured and we only paid maybe $300 for the surgery plus the GP and surgeon's co pays for the consultations.
Getting emergency treatment in the UK for life threatening chronic conditions is somewhat different just as it is in the USA. I mean the ER department isn't going to start treating the illness itself. They will only do what's needed for that crisis and it might not be the right thing either as most know nothing about
lupus. The general standard of health care for serious conditions is among the best in the world, despite the many shortcomings of the system. I have heard many horror stories out of the USA, by the way, not to mention the horror of not having any medical insurance at all.
ER treatment is for emergencies like in the USA. Everybody will be treated even if they are not resident and not EEC citizens, and usually there is no billing for services to tose who are not in those categories, such as US residents although they could legally demand it.
You could go to the USA for a second opinion I guess but getting treated for a serious chronic disease like lupus especially a very complicated case, really isn't feasible transatlantically. You'd have to find someway of being prescribed medicines, treatments like IV, regular check ups and tests back in the UK and naturally they wont take US doctors' instructions.
Something seems to have gone phenomenally wrong with your treatment options in the UK. I know people with SLE nephritis who are on dialysis and a couple who have had kidney transplants most successfully at no direct cost to themselves.
Maybe whoever prescribed and administered the Rituxan can give you further advice. I am sorry I can't be more encouraging or helpful but I send my sincere wishes that you can soon find some answers and helpful treatment
All the best
Post Edited (BumbleBee1) : 6/27/2009 2:10:25 AM (GMT-6)