Mixed Connective Tissue Disease (MCTD) with Lupus (SLE) and end-stage-renal-failure.

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Kristina1
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/8/2009 6:32 AM (GMT -7)   
 I was wondering if anyone knows a specialist in Mixed Connective Tissue Disease (MCTD) and Lupus (SLE) with end-stage-renal-failure? 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. Thank you very much.


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.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 6/8/2009 9:30 AM (GMT -7)   
Hi Kristina. I'm so sorry you have all these terrible problems. I don't live in the UK, but I do know you need to see a nephrologist. This is a physician who specializes in kidney disease. Most are very familiar with the effects of SLE on the kidneys. Also, I hope you're seeing a rheumatologist for your MCTD/SLE. Your rheumatologist should be able to get your SLE under control. Your internal medicine physician should monitor your hypertension and overall care. I don't know if urea and creatinine are measured differently in the UK, but in the US a urea of 20 is normal and creatinine is measured in tenths such as 2.1 (mg/dl). Please let us know how you're doing, ok? Love, Butterflake

Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, IBS, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, xanax, ambien, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 6/8/2009 11:06 AM (GMT -7)   
I am in the UK, and my rhumty is specialized in SLE. As far as I know, you need the referral of your GP in order to see a specialist, and it usually takes about 2 months to see a specialist. I do know that London has a lupus specialized centre, called London Lupus centre and it's private. Also, St thomas hospital is also specialized in lupus, but I think it's NHS. I do not live in London, though.
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


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/8/2009 2:34 PM (GMT -7)   
Kristina,
 
Donna's advice is good.  I had the same problems and a rheumy treated MCTD in conjunction with a nephrologist for my kidney problems.  Unfortunately, a lot of the treatment is complicated and requires more than one doctor to get the best treatment.
 
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.

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