Desperately need to find specialist successful to stop MCTD-SLE-flare-up destroying kidneys further.

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Kristina1
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Date Joined Jun 2009
Total Posts : 11
   Posted 6/23/2009 8:03 AM (GMT -6)   
I desperately need to find a specialist who was successful in stopping the progressive kidney deterioration of a patient who had a flare-up caused by SLE-MCTD. I am in end-stage-renal-failure and I have had Methyl Prednisolone-Infusions followed by Rituximab-Infusions but this treatment was not successful in stopping the deterioration of my kidneys. I have had no other treatment. My kidney function now is 9-10% and the typical symptoms of uremia have not shown themselves. Is there a patient who has been treated successfully and could they please contact me urgently. Thank you. Please contact e-mail: schmidt56@yahoo.co.uk

Dear Sir/Madam, I need urgent medical help to stop my MCTD-SLE-flare-up destroying my kidneys. A first kidney failure in 1971 I had a biopsy in 1972 diagnosed chron. proliferative Glomerulonephritis/Hypertension. Because I bled very badly I could not have another kidney biopsy. Med.History:1971 kidney failure, coma. 1982: two cerebral haemorrhages with two aneurysms clipped. 1991: CVA-stroke. August 2006: End-stage renal failure. Diagnose: MCTD, SLE, Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome, photosensitivity. My Creatinine is 436 and Urea is 20. Potassium, Sodium controlled through diet. I suffer from allergies and drug-intolerance. I would be grateful to find a specialist who can assist me medically to stop my SLE-flare-up destroying kidneys further. I was informed there is no specialist in MCTD/SLE in UK to medically assist me. No Insurance Company insures me with my medical history. Please advise. Thank you very much.


MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 6/23/2009 8:42 AM (GMT -6)   
Welcome to this forum. I am terribly sorry hear of your situation. I have end-stage renal disease (chronic proliferative mesangiopathic glomerulonephritis) secondary to Lupus also. Have you started
dialysis? I'm assuming you are under the care of a nephrologist. Have you done Cytoxan infusions? I'm just throwing some suggestions at you. I know how desperate you feel. Don't give up hope! I got down to 6% kidney function and went on dialysis from Sept. 08 - March 09 and regained some function and am no longer having to dialyze! Hang in there. Judy

Bsime
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Date Joined Apr 2006
Total Posts : 1218
   Posted 6/23/2009 8:57 AM (GMT -6)   
Kristina,
 
This patient will need 2 doctors....a nephrologist to address the kidney issues and a rheumy to treat MCTD.  A doctor with experience with lupus would know how to treat MCTD as the treatments are pretty much the same.
 
The letter from the patient is confusing....if she lives in the UK doesn't she have full insurance?  I did not understand the sentence about not being insured due to her medical history.  Maybe I don't understand the UK healthcare system.
 
These doctors should exist in the UK.  I know other patients living there who have myositis diseases (part of MCTD) who have received good care.  I don't know that you will find a specialist in MCTD anywhere but I have found good doctors to treat my case and I also had kidney involvement but not to the extent described.  A large teaching hospital with a good rheumatology department should have doctors experienced in treating lupus and overlapping connective tissue diseases like MCTD. 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


omega
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Date Joined Jan 2007
Total Posts : 603
   Posted 6/23/2009 9:29 AM (GMT -6)   
I agree with Bill. In the UK, you don't need health insurance because it's covered by the NHS. As long as it's under NHS, you will not pay for your doc's visit. There are good specialists in Lupus/MCTD as I am treated by one. I don't understand why you were told that there were no specialists in the UK would treat you. However, you will need a referral of your GP to see the specialists. I know that St Thomas Hospital in London has a special unit for lupus and renal problem. You may want to google it and email them and ask them about it.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; pregablin 75 mg


Kristina1
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/23/2009 11:58 AM (GMT -6)   
Dear Judy (MJLD), thank you so much for understanding my difficult situation without questioning. You can probably imagine how grateful I am for this. To answer your question: no, I have not had Cytoxan-Infusions or any other treatment. I need urgently find a specialist who has successfully treated patients with end-stage-renal-failure due to an SLE-MCTD-flare-up. I have not heard of/from a MCTD/SLE patient in the UK who was in a flare-up destroying their kidneys and who has been successfully treated. On 11th April 2005 I was informed by letter from the medical Chairman of my Health Authority (PCT) that there is no specialist to be found for me in the UK. I have received no assistance from my Health Authority and I try to find a specialist myself to help me medically to stop this flare-up destroying my kidneys further. Unfortunately I have become very fragile and vulnerable.
How were you treated? Did your treatment help or did the flare-up stop without treatment?
Please let me know, kind regards, Kristina.
Dear Sir/Madam, I need urgent medical help to stop my MCTD-SLE-flare-up destroying my kidneys. A first kidney failure in 1971 I had a biopsy in 1972 diagnosed chron. proliferative Glomerulonephritis/Hypertension. Because I bled very badly I could not have another kidney biopsy. Med.History:1971 kidney failure, coma. 1982: two cerebral haemorrhages with two aneurysms clipped. 1991: CVA-stroke. August 2006: End-stage renal failure. Diagnose: MCTD, SLE, Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome, photosensitivity. My Creatinine is 436 and Urea is 20. Potassium, Sodium controlled through diet. I suffer from allergies and drug-intolerance. I would be grateful to find a specialist who can assist me medically to stop my SLE-flare-up destroying kidneys further. I was informed there is no specialist in MCTD/SLE in UK to medically assist me. No Insurance Company insures me with my medical history. Please advise. Thank you very much.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 6/23/2009 10:04 PM (GMT -6)   
Kristina,
I had kidney involvement from the very beginning and done many treatments over the last 10 years. My kidneys deteriorated over a decade. I am very blessed to have had all the latest med treatments available. I can honestly say i've never had a 'mild' flare that ended without intervention as I believe some people can have. My particular case has been very aggressive and resistant at times to treatment. I did enjoy a lengthy remission after my first year of treatment. I went about 3 years with no meds whatsoever and no problems.
I apologize for being ignorant regarding your health care system in the UK. Is there someone who could advocate for you? Would it be possible for you to travel to other areas for treatment? I realize you are very sick and travel would be difficult. Again, i'm just offering suggestions.
I am so sorry you are dealing with this. I hate to be personal or pry but, do you have family or friends who could assist you in finding the help you need? You are in my prayers. Judy

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 6/23/2009 11:47 PM (GMT -6)   
Kristina, this might help a little: if you have a National Kidney Foundation like we have in the US, a charitable org that raises awareness on Kidney problems, they can be very helpful in advocating for you. In the US, they will even call your doctor if they are a dunce about what you need and educate them and give them places to refer you to and even talk to them about your care if it is not what it should be. They probably can even easily find you a place/doctor to see you.
I found these links:
UK national kidney federation
www.kidney.org.uk
UK national kidney research fund
www.kidneyresearchuk.org
INternational federation of kidney foundations
www.ifkf.net/WEBLINKS/tabid/86/Default.aspx

I hope these help, you probably already know about them, but in case you don't. I've worked with the epilepsy one in the US for my son and they have made many phone calls on my son's behalf, trying to get him some health care and a referral to a neurologist, and proper testing since he has no insuranceand no job.

I'm sorry you are going through this, my relatively mild kidney problems are so painful and make me feelso awful. I do so feel for you. Unfortunately, in the US they don't treat kidney disease (and most liver disease) until it is End Stage and is affectng your albumin and other stuff. It is so sad because so much money, and suffering and even lives could be made better by early intervention.

I hope that you feel better soon and know you are in my prayers.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Kristina1
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/24/2009 3:09 AM (GMT -6)   
Thank you, Marij
I have written to the Kidney Federation, Kidney Research, Lupus UK and many other organisations in the UK on many occassions but not received any help or assistance. They do not get involved with individual cases like mine.
 
Thank you, Judy,
There is no office in the UK to advocate for me or assist me. My husband and I have tried them all without success. No office in the UK exists to take responsibility and help vulnerable patients like myself. There is no spokesperson. I have been to the medical Ombudsman who is a woman and she cannot find anything wrong with my situation of being in end-stage-renal-failure due to a flare-up of MCTD/SLE and being without medical care. No solicitor takes my case. I have no specialist to go to because most specialists do research/experimental work on patients with rare diseases, but because of my medical history (cerebral haemorrhages, CVA-stroke and end-stage-renal-failure) I am too fragile and vulnerable to qualify as research/experimental material and therefore no specialist or doctor is willing to take me on. I am entitled by law to receive medical treatment under the NHS (the health system here) and because of this they have become very abusive towards me and my husband (who accompanies me), to make sure we are not going to any of them a second time ever with my medical complaints. As you can see, I am in check and hope very much not to be checkmate.
 
I have become very fragile and unwell, but in order to receive healthcare and save my kidneys from deteriorating further in this untreated flare-up, I see no other option than searching for a specialist who saved the kidneys of an MCTD-SLE-patient in a similar flare-up like mine, and to be prepared to travel to this specialist for treatment.
 
Thanks for your thoughts, it is very much appreciated.

Dear Sir/Madam, I need urgent medical help to stop my MCTD-SLE-flare-up destroying my kidneys. A first kidney failure in 1971 I had a biopsy in 1972 diagnosed chron. proliferative Glomerulonephritis/Hypertension. Because I bled very badly I could not have another kidney biopsy. Med.History:1971 kidney failure, coma. 1982: two cerebral haemorrhages with two aneurysms clipped. 1991: CVA-stroke. August 2006: End-stage renal failure. Diagnose: MCTD, SLE, Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome, photosensitivity. My Creatinine is 436 and Urea is 20. Potassium, Sodium controlled through diet. I suffer from allergies and drug-intolerance. I would be grateful to find a specialist who can assist me medically to stop my SLE-flare-up destroying kidneys further. I was informed there is no specialist in MCTD/SLE in UK to medically assist me. No Insurance Company insures me with my medical history. Please advise. Thank you very much.


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 603
   Posted 6/24/2009 4:37 AM (GMT -6)   
I am so sorry to hear what you have been through. It must be very discouraging for you. I found a private hospital that is specialised in lupus called London Lupus Centre at London Bridge Hospital. I don't know whether or not you have get in touch with them. If not, it may be worth it of a try. It should not be under NHS, because it's a private hospital. They have people specialized in Lupus and have Nephrology unit.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; pregablin 75 mg


Kristina1
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/24/2009 5:16 AM (GMT -6)   
Thanks, omega,
I have tried them but because of my health history they would not consider me at all.
Thanks again.
Dear Sir/Madam, I need urgent medical help to stop my MCTD-SLE-flare-up destroying my kidneys. A first kidney failure in 1971 I had a biopsy in 1972 diagnosed chron. proliferative Glomerulonephritis/Hypertension. Because I bled very badly I could not have another kidney biopsy. Med.History:1971 kidney failure, coma. 1982: two cerebral haemorrhages with two aneurysms clipped. 1991: CVA-stroke. August 2006: End-stage renal failure. Diagnose: MCTD, SLE, Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome, photosensitivity. My Creatinine is 436 and Urea is 20. Potassium, Sodium controlled through diet. I suffer from allergies and drug-intolerance. I would be grateful to find a specialist who can assist me medically to stop my SLE-flare-up destroying kidneys further. I was informed there is no specialist in MCTD/SLE in UK to medically assist me. No Insurance Company insures me with my medical history. Please advise. Thank you very much.


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 662
   Posted 6/24/2009 11:05 AM (GMT -6)   

Terribly sorry you are in this situation.  I have no extended info on this place, but it could be worth checking out, or supply you with a lead elsewhere. It's located in Pennsylvania, US. 

http://www.lupuscenter.org/join_forces.html

Also:

 http://www.brighamandwomens.org/rheumatology/lupus/forpatients_links.aspx?subid=submenu3

I don't know how far you can travel or what your financial limitations are.  I wish you the best and hope you can find help in the UK.

Blessings,

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Kristina1
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/24/2009 4:49 PM (GMT -6)   
Thank you Lucy for the information.
I shall contact them and perhaps I am lucky.
I have become very fragile, but I am determined
to find medical treatment to stop this flare-up
destroying my kidneys further and
I am prepared to travel.
I also feel I have wasted so much valuable time already
writing to authorities in the UK, asking for help
and waiting and hoping without receiving a reply
whilst my kidneys deteriorated further. 
It will be very difficult financially,
but I can see no other way to receive treatment
to stop this flare-up destroying my kidneys further.
 
Thanks again, it is very much appreciated.
Dear Sir/Madam, I need urgent medical help to stop my MCTD-SLE-flare-up destroying my kidneys. A first kidney failure in 1971 I had a biopsy in 1972 diagnosed chron. proliferative Glomerulonephritis/Hypertension. Because I bled very badly I could not have another kidney biopsy. Med.History:1971 kidney failure, coma. 1982: two cerebral haemorrhages with two aneurysms clipped. 1991: CVA-stroke. August 2006: End-stage renal failure. Diagnose: MCTD, SLE, Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome, photosensitivity. My Creatinine is 436 and Urea is 20. Potassium, Sodium controlled through diet. I suffer from allergies and drug-intolerance. I would be grateful to find a specialist who can assist me medically to stop my SLE-flare-up destroying kidneys further. I was informed there is no specialist in MCTD/SLE in UK to medically assist me. No Insurance Company insures me with my medical history. Please advise. Thank you very much.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 6/25/2009 11:21 PM (GMT -6)   
Kristina, I hopeyou are getting some help. I wouldn't write the kidney federation, but call them on the phone and ask them what facilities are best for you to contact. You need a patient advocate, a person who knows the ropes who can give you phone numbers and names, if not call on your behalf. You may have to start all over again with a new doc at a basic clinic and hope they decide to be decent doctors and refer you and get you where you need to go. Are you having problems with memory and dementia type problems? My grandmother is going through that with her kidney disease now. Perhaps getting someone like a counsellor or psychologist could pull some strings and get you to the right doctors and facilities. When I had acute liver disease, I thought I was okay but I was having trouble communicating and people weren't helpng me. I went to a psychologist (really at first to deal with possiby dying) and my psychologist became my advocate and saved my life by referring me to doctors and talking to doctors about me and pleading my case to them. She really helped me when I was too messed up and forgetful and sick to do it myself.

I hope that you can get some help. Can you go to hospital for free in the Emergency room and try to get help there? I know it takes a long time to get a specialist in the UK, but can't a regular doc call the doc who gave you the rituxin and prednisone, or another specialist, and get you back at least on prednisone? I would think that with your history, any doctor would at least try to get you on something, like a steroid if you can tolerate it. Perhaps bringing in your old prescription packages or instrutions or geting copies of your medical records and bringing them to the doctor would give them some guidelines on what you have taken and make it seem less like they are prescribing something new and more like they are just maintaining you by refilling prescriptions until you can get into a specialist.

Maybe try to research doctors at the clinics you can get in to right away, and maybe some have a nephrologist or rheumatologist background. Armed with your old medical records, getting a "refill" or "reorder" of your steroids or other meds, even if they are infusions, I would think you might be able to at least get maintenence care until you see the specialist.

I so feel for you nd am so sorry you are going through this. Kidney problem are maddening, painful, horrible, and drive you nuts in a short time. My docs hereare just lettng my kidney die because thy don't get paid enough to fix the problem. I guess we alreadyhave a two teir medcal system, good care for the rich and let the rest of us die. I'm sorry to get on my soapbox.

Take care and let me know what is happening.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Kristina1
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/26/2009 2:47 AM (GMT -6)   
Thank you Marji for your thoughts.
 
There is no patient advocate to be found to help or assist me in the UK. Over the years my husband and I have contacted many, but the way I am currently abused under the NHS and the way I have been abused under the NHS in the past has never fitted into their legal contract-restrictments. No solicitor takes my case either and the Ombudsman (who is a woman) can't see a problem that I am without any health care and have suffered in the past cerebral haemorrhages, a CVA-stroke and now end-stage-renal-failure due to not receiving health care when I was in urgent need of it.
The Ombudsman/woman has dismissed my case.
 
There is no responsible accountable office in the UK to contact for help. No one is responsible and no one cares. Everyone is for themselves and the sick and vulnerable have hardly any chance because they are too fragile to be "good ellbow-darwinists".
 
I have written to the richest woman in the world for assistance or help on many occassions but received no help or answer from her office.
 
It is on my NHS record that I am under no specialist in the UK to go to and no NHS-GP to go to either. I am in a MCTD/SLE-flare-up destroying my kidneys and I am without any medical care (except for the blood-test which I have to pay for privately. Mind you, I cannot afford it, but I have to pay if I want to know how my kidneys are doing). Since all Emergency Hospitals have a computer, they only have to put my NHS-number into the computer and there it is for all to see that I am without medical care and that no specialist has been found for me and that I have not seen a NHS-GP for many years.
 
I have tried all the options you suggest, but what am I to say when I see a NHS-doctor/specialist/NHS-GP and they ask me what I want them to do for me? How can I know what they are supposed to do to help me medically when I am not medically trained? I have been asked that question by NHS-doctors/specialists,NHS-GP's I have seen in the past years and have noticed it to be a waste of time and energy on my part to continue trying to find a doctor in the UK because all doctors are under the same system here and my kidneys have deteriorated to 9-10% function due to an untreated MCTD/SLE-flare-up destroying my kidneys. I feel I don't have anymore time or energy (I have become very vulnerable and fragile) to find a way in a system which is against medical minorities (people with rare diseases like myself). I feel now I must try to find a patient with MCTD/SLE who suffered end-stage-renal-failure due to a flare-up and the specialist who has saved their kidneys. It is this very specialist I try to find so urgently.
 
You might have a point when you say we have a two tier medical system: good care for the rich and what is left for the poor and in my case there is nothing left here to medically assist me in my vulnerable position. I do hope I have the luck to find medical assistance elsewhere because I really need it urgently.
 

Dear Sir/Madam, I need urgent medical help to stop my MCTD-SLE-flare-up destroying my kidneys. A first kidney failure in 1971 I had a biopsy in 1972 diagnosed chron. proliferative Glomerulonephritis/Hypertension. Because I bled very badly I could not have another kidney biopsy. Med.History:1971 kidney failure, coma. 1982: two cerebral haemorrhages with two aneurysms clipped. 1991: CVA-stroke. August 2006: End-stage renal failure. Diagnose: MCTD, SLE, Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome, photosensitivity. My Creatinine is 436 and Urea is 20. Potassium, Sodium controlled through diet. I suffer from allergies and drug-intolerance. I would be grateful to find a specialist who can assist me medically to stop my SLE-flare-up destroying kidneys further. I was informed there is no specialist in MCTD/SLE in UK to medically assist me. No Insurance Company insures me with my medical history. Please advise. Thank you very much.


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 6/26/2009 7:08 AM (GMT -6)   
Hello Kristina

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 prescriptions but by purchasing an annual 'ticket' which will cover the cost of all medicines, prescription costs are dramatically reduced, ludicrously low by USA standard, and many groups of people are entitled to free prescriptions, 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
BB

Post Edited (BumbleBee1) : 6/27/2009 2:10:25 AM (GMT-6)


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 182
   Posted 7/3/2009 8:40 PM (GMT -6)   
Kristina... I hope you can find the help that you need... I'm sending my prayers and good thoughts your way....
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