Has anyone else had kidney failure as a result of Hughes (APS) and Lupus anticoagulant?

[booster1]

[jetjetjet]

I have a Fatty Liver problem with no real medical reason ?????

[Kate_clot]

APS can cause kidney problems. For me it is neurological.

From one APS friend to another Here are some articles which may be useful. Take care.

hughes-syndrome.org/about-h...

ncbi.nlm.nih.gov/pmc/articl...

m.ndt.oxfordjournals.org/co...

[Bonnie39]

Hi there. I do possibly. For six weeks recently I was passing blood, often visibly but some of the time at a microscopic level. I had to have a ct scan and cystoscopy which showed no "sinister" growths and was due to suspected sle/ aps flare. At the time it was most visible I went through four courses of antibiotics, incase it was an infection. I get a uti most months, starting about a week before my period. I am seeing a nephrologist on the 10th for more investigations. I only hope they know about these conditions. Upsettingly I had a follow up appointment at St Thomas' when I was passing pure blood but the consultant left that day and discharged me!

[GinaD]

I had one scary kidney event. It may have been APS related, and if so, it would have been my first symptom. This was back in 1978-79. I would get this horrid back pain, burning urination, but after I rushed to my GP's office the urinylasia was always negative. After 2weeks of the every other day or so testing my doc's RN suggested I see a psychiatrist. From that point I tried to ignore the increasing pain, I did have a sister who had mental illness and I vowed that I was not going to let these" made up" symptoms drag me into the mental ward as well!

I was taking classes at a college a long, long bus ride from my house. One day as I finished my chem lab and turned to walk to the bus stop, I was so tired I could hardly walk at all. And then I felt I was going to fall over. Waves of dizziness and weakness which I could no longer ignore seized me. Passers by locked their arms around my shoulders and got me to the bus stop. I refused their urging to call for an ambulance and stumbled onto the bus. I let them assume I had been drinking as that was the only way they were going to leave me on my own.

A half hour later, with another 30 minutes ride plus a 2mile walk to go, I realized my good Samaritans had been right and I was in the midst of an emergency. I pulled the stop cord as the bus passed a hospital and stumbled off. My kind, elderly OB/ GYN's office was just upstairs from the bus stop, while the ER was another long walk away. I headed for the OB office. The doc was at surgery day, but a clerk who worked at another office and passed me in the hall called the OR. The kind doc came over between surgeries, took one look at me and called my Mom. He gave me an IV of something, put me on a high dose of antibiodic, and sent me home with a lot of meds and then phoned my Mom every few hour through the night to check on me.

I recovered from what he said was a massive infection that had never turned up on those earlier screens. At the time he said that he suspected something having to do with lupus and that I should drink lots of water and avoid cola drinks and hard liquor --for ever. He feared I might someday lose my left kidney. With such motivation I have ever since followed his advice and that was the last major urinary event, though I have had about 3 minor UTIs since.

So . . . As I write this., ( hadn't thought about it for years,) I am thinking that might have been my first APS symptom. A clot would have produced pain, but no signs of infection until the clot had killed enough tissue to become infected.

But to this day! If I forget to "drink water by"the clock'" (which is the phrase that OB drilled into me,) I will have that back pain in the evening. Regardless of INR So maybe it wasn't a clot? Who knows! I'll just continue with what works. A full 8 ounces of water at least 5 times a day

[Danimgw]

Hi there. I have kidney failure due to APS and Lupus (SLE). I was on cyclophosphide pulse and now on Mycophenolate. My creatine and GFR improving but still delicate.

So you are not alone !!!!

[booster1 in reply to Danimgw]

Thanks for replying. I have read very little about kidney failure as a result of APS although I know that it seems to affect nearly every aspect of one's body. Nearly 4 years ago I found myself with absolutely no energy and my creatinine levels were going higher and higher. I was hospitalized for several months while they tested me and finally diagnosed me with APS and Lupis Anticoagulant (LA) (not actually lupus but positive testing for the antibodies). As a result, both kidneys became clogged with 'sticky blood' (layman's terms) and I have been on dialysis, waiting for a transplant ever since. I am so glad you are showing improvement.

[Hidden]

I have a kidney transplant. 10 years this year. I have Lupus SLE and APS. Is there anything I can help with?

Tx