[sweetangel71]

Hiya

I haven't posted much her, minaly becuase my husbands lupus has been ticking along and not causing any more problems than usual.

Last time but one that he went to his rhumatologist he was told that his kidney function was at about 20%, so I presume that his GFR was around 20, I will ask next time though. At his last appointment he was told that his creatinine (sp?) levels were higher and that his calcium was lower. That was a couple of weeks ago, but for the last week he has been suffering with terrible itching all over, there are no physical signs though, as a result of this he hasnt' been sleeping more than a couple of hours a night and is exhausted. he's also nauseaus all the time. He went to the GP today (who is extremely good) and he thinks that it is more problems with his kidneys. A couple of years ago we were told that his kidneys could last 10 days or 10 years but he was thinking about 5 years was more likely.

I believe that one the GFR hits 15 it is classed as kidney failure. Given that he also has Hughes Syndrome I was wonding whether anyone had any experience regarding the combination of the two. When he had his first kidney biopsy he almost bled to death becuase they didn't control his INR sufficiently for the procedure.

Really I guess I just want to know if anyone else has been in a similar situation. he is so out of it at the moment he can hardly remember things from one moment to the next. He also (so far) works full time, and I know he will be worrying about that. We have a young son and I have mental health problems so am feeling at rather a loss at the moment,and rather alone, which is horrible.

I'm hoping I post this in the right place, sorry if I don't.

Terri
XX

 

[Maia]

Most likely, his itching is caused by the kidney problems. When kidney functioning gets really low, it can cause crazy itching in the absence of a rash. Has the GP given him anything to help him sleep and to control the itching? I know it gets tricky taking meds and dosing when there is near kidney failure but it seems like something could be done to help him deal with the itching and the lack of sleep.

Is the kidney failure due to lupus? I'm thinking it must not be or else they'd be doing treatments for it... It sounds like whether his GFR is 20 now or higher, he should probably be starting to make arrangements for dialysis and get on a transplant list as soon as the doctors allow it. Dialysis should ease the itching... as it purifies the blood of the things the kidneys would normally do the itching should ease up.

Here's a good link with information... best of luck to you and your husband.

http://www.kidney.org/kidneydisease/ckd/knowGFR.cfm#chart

 

[sweetangel71]

The kidney problems are sort of related to the lupus in that they were caused by the Hughes Syndrome before it was diagnosed about, 13 years ago, they're function has been gradually reducing since then. The two biopsy's he had showed that the lupus was not in his kidneys, which I guess is good.

He is on a whole heap of meds for his lupus and for his kidneys and for just about everything under the sun. The SLE just seems to tick along, although most recently he was hospitalised due to gout which he is now on meds for. it is getting difficult to separate the kidney stuff from the lupus stuff so we sort of heap it together as one.

Thanks for the link.