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MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 6/22/2009 7:28 PM (GMT -7)   
Hi!  I normally post in the Lupus forum.  I have end-stage renal disease secondary to Lupus.  I was on dialysis from Sept. '08 - March '09 then suddenly my creatinine came down to 1.8 and i'm holding my own, not having to dialyze currently, for which I am soooooo thankful.  Judy

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/22/2009 11:57 PM (GMT -7)   
Welcome MJLD.

Did the Lupus cause the renal disease?

I'm so thrilled for you that your creatinine came down. I've always wondered about dialysis, someday I will be on it with the progression of my disease. How often were you on it?

Once again welcome

Laurie
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


Kristina1
New Member


Date Joined Jun 2009
Total Posts : 11
   Posted 6/23/2009 6:11 AM (GMT -7)   
Hallo, MGLD, please tell me, was your renal decline caused by a Lupus flare-up?
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
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 6/24/2009 5:08 AM (GMT -7)   
Lupus did cause my kidney problems. I was on dialysis 3 days a week for 4 hours each session. I am very, very thankful to have a reprieve from it. It definitely takes some major adjusting!

Kristina-I have been posting on your thread in the Lupus forum. I am "Judy". I wish I knew the answer to your terrible situation. I'm sorry to say I never realized the complexity of your health care system in the UK.

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/27/2009 2:04 PM (GMT -7)   

Wow four hours at a time.  I'm gonna hate it when I have to start them.  I love my job and I don't think they would tolerate that much missed time.

I'm so happy for you that you no longer need it for the time being.

Laurie


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


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/27/2009 3:40 PM (GMT -7)   
Hey Laurie...Can you get a FMLA? That will usually give you a little more flexibility for work!

Amy

 

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...

 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 6/27/2009 3:44 PM (GMT -7)   
Chronic Pain forum that I visit mainly has touched a few of those points with FMLA cuz my supervisor is a butthead....

Laurie
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

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