[bjrem]

Hello, I have not posted in over a year.

I was diagnosed with SLE about 3 years ago...when I was living abroad. I was told that the Lupus was "mild" (even though I was having horrible flare after flare) and put on Plaquenil 400mg/day. I was also told that the Lupus was uder control because my C3 and C4 levels were always fine. However, my white cell count was always down, I was anemic and urine blood and protein were always present when I felt like I was in a flare. My new Rheumatologist (I am back living in Canada) just stares at me. Anyway...she called me back after my last urine test (I was flaring at the time) and said that my urine test came back with 3000mg of protein (in only one test...not a 24 hour one). Is that not very high and an indication of damage? She said we would just wait and see...which is what she always says to keep me quiet. In the meantime, I am flaring, my kidneys always ache and occasionally stab, I usually urinate in excess of 2-3 litres a day with almost no water intake (I take drugs to control urine output), however, when I am really sick, my urine output decreases dramatically...with no urine drugs..and it also burns upon urinating etc. There is never an infection either, by the way. Oh yeah, I have swelling in my feet, legs and hands too. My BP is also going up.

My docs think that my Lupus is "mild", maybe because I don't fit into the perfect Lupus lab result textbook, but I had significant lung involvement a few years ago...and had to be treated with steroids for a couple of years to clear it up. As far as I know...one affected organ means there could be more affected organs? My point is...logically...there must be kidney involvement, unless I am just clueless? I don't think that one has to be a Nephrologist to figure this one out. I am worried that the longer they wait to test for further damage...the worse it will get. I am only 36. I would like to start treatment now and prevent kidney failure later. Or...am I over-reacting?

The Plaquenil is great for joints and mouth sore reduction....I also think that it boosted my immunity to infection. If I stop Plaquenil...I get 20 mouth sores and my joints feel like they are going to blow up. My useless Rheumatologist tried to get me off Plaquenil...because I am positive that she thinks that I am crazy and that nothing is wrong with me.

Oh yeah, she also thinks I am fine bacause my creatinine level is not elevated...even though I have read SPECIFICALLY in many articles that creatinine may or may not be elevated when it comes to Nephritis. My creatinine always hovers right at the very high end of "normal" anyway, which makes sense to me.

Please...if anyone knows anything...I don't know what to do. My GP is great though...if that helps. I can approach him.

Thanks very much and hope everyone is hanging in there.
BJREM.

 

[cath]

Hi,

You've obviously done some reading about this subject, and your conclusions may well be right. Certainly this is worrying and needs to be taken seriously and investigated further. I don't thing "wait and see" is an appropriate response from your rheumy.

You need to see a nephrologist ASAP. Ask your rheumy directly for a referal, and if that fails ask your GP. You should have the right to a second opinion, and in your case I'd be wanting that second opinion to come from a well qualified nephrologist.

Don't give up,

Keep us updated,

X C X

 

[Gerri54]

Hi BJREM

My last urine test showed blood in my urine, which I guess by now is normal. It's always there.

My Leucocytes were 500/ul which the lab said was high.
My Ublood was 10/ul which the lab also said was high.

This infection I had no awareness of pain. I am back on gluten for an upcoming Celiac biopsy in September on the 4th. I have so much other pain. I didn't have UTI pain, more in the Kidneys, both thought pain was normal back pain.

I am just finishing my antibiotics (Macrobid 100mg x 2/day)

I would think you should get a second opinion as your readings seem to so much higher than mine.

 

[Surferboy]

Hi Bjrem, I'm new to Lupus so please forgive my ignorance.

When you say you have 300mg of protein, is that also read as 0.3? or is it read as 3.0?

Also, does plaquenil not prevent kidney damage?

 

[cath]

Hi Surfer boy,

The reading was 3000mg, that is 3.0 grams. That is the level usually reported as being indicative of nephrotic syndrome, or severe renal involvement. At this level (and often not before) the patient gets other signs and symptoms of kidney trouble like swelling in the feet and ankles, frothy urine, high blood pressure, anaemia.

It is 20 times more than the reading you had, which gives you a bit of an idea of the range between normal, not normal but not too worrying, and worryingly abnormal.

Generally once the protein loss goes over 500mg (0.5 g)/24 hours it is worth doing a kidney biopsy to grade the stage of kidney damage.

Protein leakage can get even higher than 3 g per day, but at this level or higher a nephrologist should be called in to intervene.

All the best,

Cath

 

[Surferboy]

Cath, my apologies, I'm so tired today I read your protein level as 300mg NOT 3000mg. Sorry.

Have you always had a relatively high level of protein in your urine?

 

[cath]

No Problems: it is BJREMs urine by the way that is reading at 3000mg, not mine.
My highest levels were about 500mg per day, and quickly resolved with prednisolone, kept perfect by azathioprine, so I have mild renal involvement, not threatening my long term kidney function.

Sleep well, you need it,

X C X

 

[bjrem]

Thanks everyone, for replying!

You are all right. I am going to ask to see a Nephrologist when I go see my GP this week. I just can't believe that I have to ask...it is so frustrating.

As far as I know...Plaquenil does not protect against kidney damage, but it helps more with joints, mouth sores and skin rashes. Is that right? I think so.

Thanks to all and I will keep you posted.
bjrem

 

[SoCalEric]

Bjrem,

Yes, I'd say a Nephrologist is someone you need to see...and I'd also be looking for a different Rumy! Your #s are high and if your retaining water and BP is going up..well it sure sounds like Nephritis. I didn't get a Lupus diagnosis until Nephritis set in, and by that time things were going downhill fast. Good news is that after 10 rounds of chemo with Cytoxan things got MUCH better and I had a period of a few years afterwards where I felt great (first time in YEARS). Nephritis did return a few years later and more chemo cleared it up again. Have you had a 24hr urine test? That'll tell the Doc. what your putting out in a days time (I do them all the time!). Also a biopsy on your Kidney can tell how bad your infection is (I had one)...of course first you need a Doc. that believes this is the problem. If you like your GP I'd talk with him/her about your Rumy problems, but I'd get on the ball with this, once Nephritis kicks in it's not gonna get better without some agressive treatment....and Kidneys are very important organs!

-Eric

 

[Lily]

Hi bjrem,

I'm aghast that you are having to chase this up yourself You are really going to have to be a strong advocate for yourself, just what we don't need when we are unwell :hug:

You are correct in saying what Plaquenil mainly helps with. It certainly won't help the major organ problems where stronger meds are used to control things. I did help me somewhat with my Pleuritis but that's about it as well as the joints, rashes, and mouth ulcers.

love
Lily

 

[bjrem]

Hi,

Thanks for responding you guys... I know, I have to speak up. It is so hard when you are constantly ill. I seem to think that doctors know what they are doing, and I give them all the power, but it is apparent that they do not always know. I am just still trying to figure out how my Rhematologist can just continue to wait and see. I can't wrap my brain around it. How bad does it have to get... It is almost like she doesn't want to be wrong, because then she would have to admit that she might have underestimated the degree of my illness.

I can't believe that people like SoCalEric don't get diagnosed until the kidneys almost fail....or are failing. I was lucky to be diagnosed by someone else in another country...not this Rheumy...she would never have diagnosed me and I would still be searching.

bjrem