I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on April 12, 2009, 02:50:57 AM
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This is a difficult one and I would be grateful for suggestions. A course of Metholprednisolone-Infusions followed by Retuximab-Infusions did not work for me. In fact the Retuximab caused a flare-up which may have been counterproductive. I was not given the opportunity of another treatment so I am left wondering whether another treatment would work like for example Cyclophosphamide + Corticosteroids. I have heard the latter worked for someone bringing their Creatinine down. Apart from treatment-options I am also urgently trying to find a specialist with experience in kidney failure, Lupus, and Vasculitis.
I haven't had a biopsy of my kidneys because the nephrologists think it very inadvisable given my medical history and current situation. After my first kidney failure in 1971 I soon had a biopsy in 1972 from which they diagnosed I had chronic proliferative Glomerulonephritis with Hypertension and they also said I should not have a biopsy again because I bled very badly and it would endanger my life. This means that any current nephrologist could only go on this original diagnosis.
I am located near a teaching hospital but my complicated disease picture and medical history (1971 kidney failure, coma. 1982: two cerebral haemorrhages with two aneurysms clipped. 1991: CVA-stroke. August 2006: End-stage renal failure, plus, I have been diagnosed with: MCTD, SLE, Antiphospholipid Syndrome, Vasculitis, Sicca Syndrome, Sjoegren’s Syndrome etc, etc) completely overwhelms this reputedly experienced medical team and they have run out of ideas. I also suffer from photosensitivity (also common in Lupus patients). The fluorescent lights in Hospitals emit UV-rays which affect me badly and so it makes it difficult to manage Hospital appointments.
Speaking with other patients with MCTD and Lupus, I am afraid that it would probably be impossible to find anyone similar to me, though I have spoken to two other MCTD-patients but their disease pattern and medical history was not even similar to mine and I have gathered that each patient with this disease is treated individually and therefore it is hard to compare experiences with anyone else. Sometimes I am not given a treatment because it is contraindicated due to another disease I suffer from and this limits treatment options. In case it has a bearing on treatment options and quantity of medication, I can say I am a 55 years old female, I weigh 59-60 kg, I am a vegetarian and of average height and build. A kidney scan showed my right kidney 8.6cm and left kidney 7.7cm. Has this size any relevance to 10% GFR?
My kidney function is around 10% now. I suffer from tiredness but this could just as easily be due to Lupus as end-stage renal failure. I have no outward signs of kidney failure, I am only told I have end-stage renal failure because my Creatinine reached a certain point. Over the last three months my Creatinine level has been in January:374, February:436 and March:409. (The trend is up-wards, but it fluctuates). My Urea has actually come down to 18 and Potassium and Sodium are controlled naturally through my diet. I have also been diagnosed with drug-intolerance (common to Lupus patients) and this is an unfortunate problem because the side-effects of treatment often outweighs the benefit. I know this complicates things greatly.
So, I would be very grateful indeed if anyone knew of a competent specialist in this area or could suggest treatment options and their experience with them. I know this is an extremely complicated matter and I am not expecting miracles but would be grateful if anyone has any ideas where I could go.
Thank you, Kristina. e-mail: schmidt56@yahoo.co.uk
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I have no answers for you, but I wanted to wish you best wishes in your search for a new doctor. Find the one you like and trust.
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Thank you kitkatz for your understanding. I think I need lots of luck to have a chance. Thanks again.