I havent been dx w/lupus. So far just as a possible. I tested positive for Anti Ro SSA but negative for SSB and all the other. I have had a kidney infection or definate white blood cells for the past 2 months. My GP has been trying to kick it but I have gotten much worse. He said the levels are very high right now and put me on Micro bid. I have been taking it for 4 days and it isnt helping either. This is the second antibiotic the last was levaquin. I am getting concerned because I cant seem to kick it. It is making me feel really bad and hurts. My legs are numb again but I think it is just due to the kidney problem.
Anyone else have a problem with recurrent kidney infections???
Hi, Erin. Yes, I do have recurrent urinary tract infections. Before I was diagnosed with lupus, I had only had one uti in my life, at least that I was aware of. That one was weird too, none of the expected symptoms or warnings, just went to the bathroom and out came a stream of blood. Don't know what I was given then, it was five years ago. But as for my recent infections, I have had about seven in the past year. The two drugs I have taken are Levaquin and Cipro. Each one seemed to do the trick each time, except the very last time I had one a couple of months ago, that one seemed very stubborn. I had just had a pretty bad one the end of April, went to the doctor and got Cipro for that, the symptoms went away, but I wasn't checked to make sure the white blood cells in my urine were gone, so maybe they were not. Anyway, only three weeks after that one, I got the telltale urgency and frequency and pressure feeling and knew that it was back, that is, if it had ever been gone. I called the doctor back to get them to phone me over a prescription, and the nurse looked at my chart and said, why miss, we already phoned one in for you a couple of weeks ago, didn't you go get it? Of course I had. So, after I explained that this was a whole separate incident, she told me that for such a stubborn case, I needed to see a doctor and get urinalysis. I did that and this time I was given Levaquin, which I know did the trick, since I went back for a follow-up and the wbc count in my urine was back within normal range.
I think my ridiculous rate of urinary tract infections is due to several factors: 1) the lupus, or more accurately, the increased suscepibility to infections because of taking prednisone (the infections are worse and you get more of them); 2) my new birth control method, which is now a diapragm (I am still crying over losing my beautiful NuvaRing:sniff, which presses against the urethra, which means when you have it in, your bladder can't empty completely as it should, which means old urine that could be full of bacteria gets to hang out in your bladder longer and cause trouble; and 3) increased sexual activity (since new year's, I have been in my first sexual relationship for some time), since sex tends to push bacteria up into the female urinary tract, where before, that was not even a factor for me.
My new approach to getting this under control is just simple common sense stuff. I am always extra careful never to wipe up in the direction of my urethra when I go to the bathroom. I drink tons of water daily, and urinate a lot to keep the bacteria flushed out of my bladder. This is VERY important. Concentrated urine is a breeding ground for bacteria. You can tell if your urine is too concentrated by its color. The lab people at my doctor told me that it should be a pale golden yellow color, not the dark yellow or browish stuff that a lot of people who are drinking too little fluids often have. I always go before and after sex. The experts recommend that people with these kinds of problems don't wait until the urge presents itself before you go to the bathroom. They recommend that whenever you are conveniently near a bathroom, go in order to keep your bladder as empty of urine as possible.
I have been reading around on the internet, and there have been at least of couple of reputable studies done on women with frequent uti's using cranberry juice. You probably have heard that cranberry juice has been shown to keep bacteria from being able to adhere to the bladder wall and therefore makes it hard for them to establish an infection. So, according to the guidelines used in one of the studies, women who drank a large glass of cranberry juice daily had greatly reduced rates of urinary tract infections. So, I have begun to drink large glass of cranberry juice every day. The best results were with 16 oz, but I know I don't get exactly that much, but close. So far, so good, but I have only been using it on a daily basis since July, we will see. And don't get the weak cranberry juice cocktail. They seem to think that you must have at least 27% cranberry juice in it to be effective. I know that certain brands have the percentage on the label, and one brand has the endorsement of the major kidney foundation in the country right on the label. I tend to buy the 100% juice instead of the cocktail, although it is mixed with other juices besides cranberry (100% cranberry juice is too bitter to drink), I know I am getting at least the minumum I need to be effective.
Hope you have better luck at getting your rate of infections down. They are no fun and leave you miserable.
Hi Erin- I hope that your infection clears soon! Does it hurt in your back below the ribs? Do you have a fever and are you nauseated and without appetite? These are signs of kidney infection and usually not found in bladder infections. Did your Dr. think it was in the kidney?
Have they done a culture that shows bacteria growth? WBCs usually do signal kidney infection, but it's best to be sure.
I have lupus and had numerous kidney infections (6-10 per year) for many years without explanation from my rheumatologist, gyno., urologist of nephrologist. They were sometimes severe, always showed up in a culture, but did clear with antibiotics, so they were recurring. Just a guess, but it sounds like you may not have gotten rid of your original infection. They can do a bacterial resistance test to see which antibiotic will work for your specific bacteria. Maybe you're not on the right drug yet.???
Also, I think white blood cells, once in a rare while, suggest other things within the kidneys and may not mean definite infection. With lupus, inflammation can pop up anywhere.
I agree with the previous poster's suggestions, and some people take an antibiotic before sex. Though sex sometimes brought on my infections, I do not subscribe to this idea because by doing so, my "bugs" were becoming increasingly resistant to the antiobiotics. After years of taking antibiotics (uh-oh, I sound like a wild girl), many of them no longer work for me.
But, please don't be scared that you will suffer repeated infections. This may be a rare occurence for you; let's hope!!
Kidney infections can have very different causes than bladder infections and can be more serious so I'm glad you're looking for an answer!
I passed kidney stones 2 years ago and surprise, surprise... I now get infections only rarely. Wish ONE of those Dr.s would've told me that stones may trap bacteria and cause repeated infections.
I'm going to jump in here and add just a little note to all the wonderful information that has already been posted. I too have suffered several bladder and kidney infections. Some, they said, were precipated by sex, others were not. I have been on all the medications mentioned here at one time or another. The microbid is the only one that works well for me anymore.
My post is really about the cranberry juice thing. That was suggested to me also, however, there is much sugar in pure juices and that caused me a problem so now I take a cranberry extract in capsule form. The kind recommended by my Dr. can be obtained in any Wal-Mart and it doesn't cost too much. I have been able to avoid infection for almost 7 months now. It is just great. Good luck.
The levaquin didnt work. I knew it stayed...it just dulled it out a bit. But my urine was still loaded with the cells even big ones or large white floaty things. The microbid didnt work either so now we are trying Bactrim and Cipro together. He did send off a culture today to see what else to try. It is still pretty bad and very painful. I dont have the urgency just the pain. Now I am not even going to the bathroom very much at all. And for the record this couldnt be from too much sex. My husband would shout out that lately I have not really been in the mood. Poor man has been lucky to get it once a month. I have just been too whiped out.
It feels like it is in both of my kidneys. Both sides of my back hurt from the bottom part of my rib cage to my hips. Plus the fever makes it worse I am sure. My eyes and joints hurt even! I just hope this last stuff works. He said I should see an improvement by tomorrow. If this doesnt work he is just going to have to wait for the culture which will take 3 days. He said if I get worse to go to the ER. Well been there done that last night. After waiting 3 hours I went to the desk to see how much longer because sitting in the chair was killing me and she said atleast another 4 hours barring nothing more urgent came in. I was floored. This is a town with 5 high schools and only two hospitals! I left and went back to my doctor this morning. He said I should have stayed and they would have probably admitted me. If I would have waited it out they probably would have had to just from sitting in the chair so long! I told the dr. I just want to get better so I can get back to work. I sit at a desk, so if I could just get it a little better I can go back. I must have looked pretty bad because he gave me 30 Vicodin ES for pain and my dr is very strict on pain meds. My BP last night was 148/96 so I know this is really taking a toll on my body.
I was worried at first about kidney disease. I read that having the anti ro/ssa and not the anti la/ssb showed a likelyhood to nephritis.
Also on a side note, on the news here last night ironically they said that cranberry juice can actually INCREASE the possiblity of kidney stones. I have never had one and dont want one. I have just been drinking alot of water.
Thank you for your posts. Hopefully the next time I post I will feel much better.
Also, on the molar rash...can you just get it on your nose. I have red bumps all over my nose??
FYI, I finally tested positive for SS-A (anti-Ro) in summer 2000 and was Dx'ed with the SCLE subset of lupus ( = subacute cutaneous LE). I take Plaquenil, and OTC's for pain as needed.
I was never told, though, that being positive for SS-A makes one "overly prone" to nephritis. Could happen but odds are it will not, was what I understood. While SCLE symptoms can range across the entire spectrum of *SLE*, including nephritis, the worst SLE problems are not, experts *think*, as statistically likely in SCLE. (But that's just what I was told & I've read---I'm just a patient.)
Has your problem been deemed a definite KIDNEY problem? Is there any possibility that it's bladder/lower urinary tract? I only wondered because if you need a specialist's insight, that might mean either a nephrologist OR a urologist... if your GP can't square you away.
I only wonder because I used to form stones & grit, once having a total blockage. I felt throbbing pain in the kidneys like you describe, started passing blood, then couldn't urinate, then started vomiting profusely, etc. ER did some sort of quick test (ultrasound?) that showed lots of gritty junk in my bladder, then put me on an IV. Lo & behold, in an hour or so, I became unblocked and was sent home with antibiotics and pain meds.
That episode was sudden & acute, but I'd had a LOT of urinary irritablility, urgency and UTI's, both before & after. I did see a urologist for awhile; he considered Interstitial Cystitis, but he didn't perform the "knock-out" IC test because I had so many other things going on. And my urinary problems are almost ZERO since being Dx'ed with SCLE and starting Plaquenil.
BUT if I were in your shoes and had problems like you describe (kidney? bladder?) that were not going away, I'd want to see a nephrologist or urologist, seeing first whichever was more strongly indicated. I hope you update us when time permits. GOOD LUCK. Sympathetically, Vee
I did finally have to go to the urologist. He said it isnt a kidney infection. And the culture confirms it. I have ALOT of white cells, red cells and casts. I had my CT on Tuesday and go back next tuesday for a cystocopy(sp?). He said it is definately a problem of some kind and he is just starting from the bottom. I was a bit upset at first but ok now. Just the unnecessary expense of all the antibiotics alone ticked me off, but who knew. He did indicate that he believes that this will end up being lupus related kidney disease. I am actually hoping it will be stones! If you can believe it!
Till then I am just waiting to get all the info. I have put up another thread since the first didnt get an answer to see if anyone could advise me on what they do for this. My sister has SLE but no kidney problems yet. So I didnt expect this so quick.
Yes, I can believe it. Erin, I am with you... I too hope it will be kidney stones. Lesser of two evils, for sure. Although kidney stones can be horribly painful and keep coming back, I don't think they actually compromise kidney function and or end up as kidney disease, which lupus nephritis definitely does. But either way, you will get through it. Believe that.
Did either of you have kidney stones as well, or painful urination without signs of infection?
I dont know if it is stones or not. Still waiting for the CT results. That is actually my hope. I dont hurt when I urinate at all. No burning. My back, joints, muscles and head hurts. I also am running a fever. What made me think it was and infection is that my urine was so bad. VERY cloudy with large white things that looked like rice. I wasnt aware of the blood till I went to the urologist. I have been up to that time doing the antibiotic dance with no results. Then finally a culture was ordered but I went to the urologist a couple of days later. The culture was negative which means it isnt an infection. It is inflammation. Now we are just trying to find the cause.
VeeJ below is one of the articles I referred to that stated that having the Ro SSA without the LA SSB had higher incidence of nephritis.
Clinical and serological differences between systemic lupus erythematosus patients with antibodies to Ro versus patients with antibodies to Ro and La.
Wasicek CA, Reichlin M.
Among 55 systemic lupus erythematosus patients having antibodies to Ro and/or La, two major groups were distinguished by titration of sera in counterimmunoelectrophoresis. The first group (30 patients) had antibodies to Ro alone. This was associated with a high incidence of antibodies to DNA (77%) and serious renal disease (53%). The second group (23 patients) had antibodies to Ro and La, and this was associated with a lower incidence of antibodies to DNA (30%) and a very low incidence of nephritis (9%). In this group a phenomenon of linkage of anti- Ro and anti-La titers was observed. Additionally two patients with only anti-La were found. Neither had clinically apparent renal disease. Thus, systemic lupus erythematosus patients with anti-Ro fall into two subgroups that differ considerably in their prevalence of anti-DNA and serious renal disease.
Hi, EStevens. I think I've seen the name Reichlin, too.
I see what you meant now. Now you've got ME wondering! I never asked if I tested positive for anti-La in addition to anti-Ro. My rheumie does full labs every 4 months & I always wondered why. (Hmmmmm?)
What you just excerpted makes something I've read about anti-Ro make a whole lot more sense now: that about 1/2 tend to do well, with the other half experiencing more profound problems that can extend through the whole SLE spectrum. Look at the split you quoted between Ro-only and Ro+La. Not quite 50/50 but fairly close.
Felicia, you asked if any of us had had both urinary irritability & stones. I had both and fairly frquent UTI's, too.
The irritability was bizarre to me, as I'd test negative, accompanied by nasty urgency, too. The urologist toyed with testing me for Interstitial Cystitis but held off, and luckily I didn't have to have that test as lupus was becoming the stronger "single bullet theory" candidate.
I also had IBS bouts for 25+ years, which will tend to dehydrate you, unbalancing urine pH and thus making infections & stones/grit more likely.
Erin, I hope you are closer to answers & that they prove to be "only" urinary, not kidney. Once lupus became a possibility, I was very concerned that I'd have kidney problems, given the flurry of problems. But 5 years in, no signs...so I know it's possible for things to turn out that way. And I hope they do for you!
Well I have an update. The urologist called. He said that the CT scan doesnt show stones and my cells are normal (no cancer, didnt even know they were looking for that but he said with blood in my urine they do). He said that he believes that nephritis is a strong possibility and that I need to see a nephrologist for a biopsy. He said that without the stones and the large number of white cells and casts as well as red blood cells there has to be an inflammation. He is sending me all of my test results. I am going to get them and send them to my rheumi and see what he says as well.
Yes, I saw what you meant. From what I could read it is the absence of the LA that causes the increased risk. Which I dont have. I saw my results and the nurse pointed it out to me. She said they usually go together but not always as in my case. After I researched it, I found... well you can see what was found. And now with all that is going on. I really feel in my gut that it is going to be lupus related, but hopefully mild. It is all just moving so fast. Since this time last year I have had so many things going on. Mostly CNS symptoms, so much so they figured it was MS. I have even had 4 bouts of Optic Neuritis. But all of my tests were normal till recently. Now the kidney thing. Since there isnt an infection or stones he said it leaves very few other possibilities. He also said I may be lucky and at the beginning stages and so it will be very treatable.
I am glad to hear that they warned you about the cranberry juice, yes it can cause kidney stones and that is because it contains vitamin C and a high level of this in your body can cause the body to create stones in your kidneys. Water is you best bet and lots of it. I work for a urologist and your problems are not that uncommon. Make sure that you expain the lower back pain they may want to run a few test such as a renal ultrasound or a cat scan, to check to see if you have stones. That might be the cause for the infection to begin with. Someone eles told you they can trap urine in the kidneys or ureters and this will lead to infection. As far as your blood tests go I have been Dx. for almost a year now and still only the SSA is present, it took a long time to get an offical dx. so don't give up. Have they put you on any steroids yet? If this is truely just a simple infection that you body is having a hard time fighting they may be helpfull in conjunction with the antiboitics. Keep us posted and I hope you feel better soon.