An update on neuro stuff.... still waiting to get IVIG set up. Have not been able to get in touch with neurologist since appt about 3 weeks ago. Rheum won’t write for it. Getting very frustrated and depressed by this whole situation. I keep physically declining. My vision is crap. Hard to read, watch TV, drive. My husband has been doing everything for me. What a trooper he has been. Rheum just gave me more steroids so my poor husband had to deal with my roid rage and my symptoms didn’t even get any better.
On that note, I’ve noticed after I work out, my sweat smells like windex/ammonia. I know this happens when you cut out fat, carbs or you have renal disease and urea builds up. I don’t think I have kidney problems. My creatinine has always been a little high at 1.2 eGFR is always 60-70. And I’m still peeing okay. My diet is pretty balanced.
Just wondering if anyone has noticed this or figured out what was causing it? Not a problem for me but just curious if it’s ever been on anyone’s list of mystery symptoms?
TIA ❤️
Written by
Jmiller623
To view profiles and participate in discussions please or .
Hi....have you had tests for kidney disease? .I have class 5 lupus nephritis and apart from foamy urine there is no difference in going to the loo as it causes no symptoms.your eGFR is indicative of mild disease....normal is above 90.mine is 60.your creatinine level is also slightly high.i had no idea I had renal disease until a routine dip stick at my rheumatology appointment was off the scale.many with lupus have kidney involvement with knowing it but the only way to get a definite diagnosis is with a kidney biopsy.i had one in 2018.i now see a kidney specialist.as for sweat smell cant say I've notice but then again I dont work out walking is my limit now .x
No protein on dipstick. Sometimes small blood and white blood cells. No bacteria. I understand my kidney function isn’t optimal. Rheumatologist just says drink more water. I already drink like 8-12 cups a day. She cares nothing for a mildly elevated Cr. Feel like I have to be in fulminant failure for anyone to care at this point.
Just strange. Started suddenly like about 2 weeks ago. Made appt in August with PCP. Hopefully get some basic labs done.
It was unseen blood in mine that was off the scale.i take mmf which they use for renal disease also so as such my kidney specialist just monitors me at the moment.i see him every 4 months.my creatinine level has been stable at 0.3 and gfr at 60.my rheumatologist handed over care to my kidney specialist but they do communicate with each other regarding the mmf.i hope you get some answers soon and I'd push for full bloods x
Hi, just a thought. As you have a balanced diet, fluids, kidney function seems ok, maybe you aren't metabolising well and ammonia isn't converting to urea - is your liver the problem? I'm sure you've had liver tests, but might be worth more investigation. Mine were a bit off but not enough for the GP to be concerned, but when I did a liver function of my own (to check methylation really) - a urine Hepatic Detox test - it showed my Phase 2 liver pathway was quite poor. I remember thinking about 3 years ago that the tiny bit of sweat that I was still producing was 'strong' but don't remember if it was particularly ammonia, but urine was. Also gall bladder issues. Cessation of sweat in my case I initially thought was thyroid, seems now to be autonomic as have SFN etc. Best wishes PS love to Bax
Thanks bookish. I have some old lab orders for renal function I’m going to use. I made appt with PCP second week in August. Maybe he can help. I’ve also been having this weird pulling, Velcro like feeling at my bottom right lung. Been complaining about it for months. Makes me wonder if my liver is pushing up on my diaphragm. Lots of unknowns right now but def know something isn’t right.
That sounds very much like how my liver feels - pulling, tight, swollen and pressure on surroundings. I've been trying to get someone to understand that I have reasonable concerns about liver function for a couple of years, but it has been noticeable for maybe 8 months or so. I suspect fatty liver (poor detox for years, too many meds, undiagnosed food intolerances, poor gut health etc etc), but could be poor blood flow (poss APS or the SFN) or something else. Hope you can get to the bottom of it. Best of luck x
Yes’m. Even when on high dose steroids, highest my glucose got was 130. Last A1c was 5.8%.
I did get some labs done yesterday. They were due a month ago but held off because of COVID. My creatinine is still up to 1.2. Now my BUN is also rising. It was almost abnormally high this time which means I’m not clearing urea. I drink 8-12 glasses of water per day because I do sweat a lot. My CPK also remains elevated 200-300 per usual. Nothing new there.
Maybe it’s my liver or maybe my kidneys are taking a dive. Rheum said to repeat labs in 2 weeks and drink more fluids. 🤷♀️
Only time will tell but given that steroids hardly touched my symptoms this time, I think something isn’t right. I’m sure whatever is brewing will rear it’s ugly head soon.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What is this ? ❄️
What's happening to me?
Lupus Like Syndrome?
Recently Diagnosed with SLE and looking for help.
Starting methotrexate tomorrow from mycophenolate...bit scared...
