[Salopsally]

Hi,
Just read the link posted by Lazylegs on someone eles post and it has frightened me a bit. It was on Lupus Nephritis.

The first page shocked me as I seem to have all the symptoms.

Ive been telling the doctor for years about my swollen ankles, legs, and feet. Also for some time I seem to have to get up so many times in the night. Last night I went to bed at 12 midnight. Up again 1am. 3 am. 5 am and then 6.30. I wake up because Im busting to go to the toilet. I try to forget it and get back to sleep but it doesnt go away so Im up and down all night with broken sleep.

It also said the swollen legs and feet usually are ok when you wake and get worse as the day goes on which is exactly how mine are.

I may be being paranoid. Ive mentioned this to the Rheumy and to my GP.
Im not under a Lupus specialist as such. Do they know the symptoms of Lupus kidney trouble I wonder. Im sure they should.

Maybe as Ive had the swollen legs for years perhaps thats a sign its nothing to worry about. I definatley have oedema too. (not sure how you spell that)
I get great big dents in my legs when I wear boots or socks or such like.

I know you are not doctors but Im beginning to get more help from this site than I do from anyone else. I weigh it all up then make the decision whether to make a fuss and push for some answers.. or not.

Ive had my urine tested when I go to the Rheumy and they never say there is anything wrong with it. Thats only twice in the last 16 months.
I had it tested at the GPs once too and it had blood and something else in it but that was a urine infection she said.

Grateful for any ideas or comments

Thanks in anticipation.
Sal x

 

[LolaLola]

Dear Sal, It is also true that harmless leg swelling is generally gone when you wake up and gets worse during the day. However, as you are worried- and monitoring is VERY important in Lupus, my own feeling is that a Kidney function test would be an easy way forward with this. I hope your GP is approachable. Is there no decent Consultant at all for you, you do really need Consultant support.
X Lola

 

[Clare.T]

Sal, this is very simple.

Get a urine test done at GP's also ask for kidney function and complete blood count. If protein shows up, anything else peculiar or any abnormal bloods, then further investigation is needed. Get your blood pressure done too. The practice nurse should be happy to do that

I get bloods done every 3/4 months because of taking the azathioprine but I always ask now for urine test too. An additional reason is that I have had asymptomatic UTI's on 3 occasions now. If I wasn't taking the AZA I would want urine and blood work every 6 months just to be on safe side.
That's despite having had lupus for so long that the chances of progression are virtually nil

I asked my GP about swollen lower legs and feet. He explained that it is normal with lupus as the veins aren't working properly. My legs are all mottled below the mid calf line, real old lady stuff. Mine are far worse when the weather is hot so this year has been great in that respect. I also wear knee highs not ankle socks/stockings so at least I dont have a great dent round my calves.

I don't know about urinary frequency except that can be associated with diabetes, so get tested for that too. There may be other causes I know nothing about.

It's said there's about 50% kidney involvement at some time ranging from the occasional slight loss of protein that needs no treatment, to the more serious degrees of permanent damage. We can't say how it happens that in some people the damage isn't detected until it needs aggressive treatment. Perhaps in some people it comes on very suddenly and progresses very fast so it can get to that stage between appointments. Anyway some people who are reckoned stable don't see their specialists for over a year. It seems reasonable to say that the more we look after ourselves the less likely it is that it can creep up undetected.
( Another reason too for taking disease modifying medicines so long as there are obvious symptoms of active disease )
With the emphasis on preventative medicine these days no GP should refuse basic testing at regular intervals for well people and people with lupus need it even more as part of their regular disease associated intermediate health care. If it's any comfort, the longer a person has had lupus or similar, the less likely serious organ involvement is.

A bit off topic, but to make the point that if something is troubling us we need to see our doctor about it. I developed stress and urgency incontinence late last year following a bad cough cold sort of thing. I did look it up online and got some tips on managing it but nothing seemed to help. I really don't know why I didn't go down to the surgery sooner, to see what they had to say but it wasn't until we got an invite to stay for a week with some people that the full impact of this incontinence on my life became apparent. There was no laundry facility so I would need umpteen changes of even pyjas & knickers despite using pads all the time. So I mentioned it to practice nurse sort of incidentally when I was there for something else. Do you know, a simple pill cleared the problem overnight ! I only needed a quarter of the prescribed dose too and don't even take the med now.
None of my online reading had even mentioned this medicine ! They were all on about what you can and need to do yourself about it.

So make appointment to see GP to start getting your concerns addressed and almost certainly get your fears allayed. Symptoms can have many causes and not all are important or have any needed remedy.

Bye for now and many hugs


Clare

 

[Maia]

There are numerous other reasons for swollen legs and edema that have nothing to do with kidney problems as well, ranging from not of any real concern/no treatment necessary to requiring some sort of treatment. Heart problems can lead to such edema too for instance...

This kind of thing is another reason why I always get copies of my blood test results and visit notes; then I have for my own records what has been tested and what has/hasn't shown up yet. It's pretty likely that it's not due to lupus kidney involvement if it's been around for this long and the tests done in the previous 16 months haven't raised any flags. Things like protein in urine, high creatinine in the blood/low GFR, high BUN, would all indicate kidney troubles and these tests were likely all run at those two visits. Since no additional testing has been recommended, I would like to think that you are in the clear for now on the kidney issue. But continued testing is definitely important as Clare says.

 

[Salopsally]

Thanks everyone for your help and advice.
Luv Sal xx

 

[keebler]

I had swelling of my foot and ankle, around Mother's day.
I did see my GP the next day. (called the er on mother's day and they didn't want me to come in )

When I saw my rhumey, I got a lecture from him about why I need to get an ultra sound done, right away. He said with lupus he is concerned with blood clots. He said we are more prone to getting them. He also had me do a 24 hr. urine catch.

Last month I saw my cardiologist. He sent me right away to get an ultra sound done on my leg. Even though it was a few months late. He said they did see where a clot was on a patient that had one several years ago. Plus I got the same lecture about clots from him. Thankfully the ultrasound was ok.


I guess from all this rambling :lol: that I am doing. That you need to get any swelling check out. Better to be safe than sorry.

Take care,
Lyn

 

[alisiajo]

I had kidney involvement. I litterely stopped going to the restroom and tha tis why my body filled up with liquid. I think if it was kidney involved you wouldnt be going to the bathroom as often. But my kidneys are still bad and i seem to be going quiet often. I also am on 80 mg of Lasix. You could even ask your GP about a water pill and they also sell them over the counter. It doesn help a lot with swelling. I dont know of any other conditions but i think it would be a good idea to be checked for anything that causes that affect.

 

[erenae1974]

I have to agree with what Alisiajo said about going to the bathroom. I was recently in the hospital due to nephritis. Before that I was hardly going to the bathroom at all. I have been and am being treated for it with prednisone and cellcept. It is true that your ankles & feet & legs swell up alot though with kidney problems.