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

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New Member

Date Joined Jun 2009
Total Posts : 11
   Posted 6/23/2009 8:06 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:

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.

Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 6/27/2009 4:00 PM (GMT -6)   
Welcome Kristina...

I would have no advice on this one other then visiting us in the states to see specialist.

I just wanted to welcome you to HW. We have alot of information we can search through. I know you might have done this already but have you considered full googles searchs. I know this can take hours and hours out of your time. But you might be able to find someone in the UK who is educated in this condition..

I hope you find the help you need and I will keep you in my prayers.

39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD
Also CHF (Congestive Heart Failure) and Sleep Apnea
Hopefully NO MORE........ I think I have it all

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 6/27/2009 6:05 PM (GMT -6)   
Hey Kristina, if you want to travel to NC, I have a great and I mean GREAT Rhuemy and nephrologist! I am sorry you are going through so much and can't seem to get any help. I saw in the lupus forum you where ready to travel! I wish you well and let us know if you decide to come to the states! Also, welcome :)



21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


New Member

Date Joined Aug 2009
Total Posts : 14
   Posted 8/27/2009 3:35 PM (GMT -6)   
I agree with others you could come here.  Also, Bath has a good rheumatology hospital.  It is where i went when I was there.  I also found good care in London.  It sounds like you got similar treatment to what i have had here.  why has it been so long for your biopsies.  I had several back-to-back,  The second bled too much. we stopped it.  several days later another was done.  you shouldn't have to wait years to have another one done. I tried the rituxan, then cytoxan, they could have also gone with cellcept.  I don't know that there are any other treatments available. but i reacted badly to the cytoxan and ended up on dialysis with about the same amount of kidney function that you mentioned.  so they say. we are totally at their mercy. I suppose you could keep shoppng around right there where you are until you find the right one.
I hope you find the right one soon.  kidney failure is life threatening as i am sure you know. post how you are doing. best wishes.
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