Bladder Infections?

[NikkiNicole]

With my recent diagnosis, I kept mentioning something to all my doctors and they all said it wasn't related. I get frequent Urinary Tract infections. In 2011 I had one every 3 months and they were bad and sometimes antibiotic resistant. I'd be in tears. A couple times there were red blood cells in my urine but, no one ever batted an eye.
I still get them. I drink SO much water now that I feel like I stay ahead of them but occasionally feel like one's about to slam into me.
I'm an obsessively clean person. I cringe when the nurses are like "Shower after sex, etc etc". Yes I know! I do all these things!

Has anyone else had infections like this?
The docs say my kidneys so far aren't involved but there's definitely something wrong in that general area of my body. So much so that I have a standby bottle of Augmentin at home in case the one I thought I was getting actually comes.

I want them to note that as well so they keep an eye on it. My urine is always pretty high in protein as well but again, they are like "Oh that's normal." Um ... no.

[drz]

I had lot of bladder infections when on CTX. Diabetes also increased my risk of bladder infections. It was strange how one infection would be resistant to a certain antibiotic and then the next one would need the same antibiotic to treat it. Infections apparently can change or evolve rather quickly in bladder. When I got off the CTX and had surgery to repair damage caused by it, the infections seemed to stop for me. I do still take trimethoprim (non-sulfa part of bactrim) as a precaution to prevent infections. Are you seeing a good nephrologist experience in treating Wegs. A good consultation on your kidneys might be reassuring as well as another urology work up to assess the problem. Falk is on of the best and highly recommended nephrologists for Wegs.. Has your partner been tested for things that might cause your UTI's?

[Alysia]

Hi Nikki,
I had one blader infection but it takes time to find the exact antibiotics. macro dantin helps. augmentin is useless.
It also takes more time for healing. maybe because the Imuune system is weak.

[Marci]

I wondered about bladder infections too. I had two last year and both times I remember them mentioning that there was blood in my urine sample. I try to drink lots of water and I take concentrated cranberry tablets. I do think they have helped some. I also have to be careful about what I eat sometimes. Spicy foods and carbinated drinks someitimes seems to set it off.

[JeanMarie]

I thought protein in urine was a sure sign of kidney involvement. Am I wrong? If I show up with protein My Rheumy is calling my nephrologist right away--& in the past they quickly decided to treat. If the creatinine goes up a little & nothing else does, they just watch a lot more carefully, but protein they never ignore.

Anybody else with the same view?

Jean Marie

[NikkiNicole]

My last few urinalysis tests have shown protein every time and the rheumy says its fine. This doesn't feel fine to me. I hope that it never gets worse before he decides its related.

[rebekah]

In one of my pre-med classes I learned that low levels of protein in urine are normal, and a temporary rise in protein can be seen in some after strenuous exercise or during an illness; however, it is often a sign that there is something wrong with the kidneys. Having WG which often affects the kidneys, I recommend having your doctor run tests to check your kidney function. It is definitely not something to mess around with and leave untreated. I didn't experience any symptoms so I went untreated and I found out one day that my kidney was failing, fast. I ended up having a transplant in December (about a month after finding out my kidney had lost ~90% of its function). Sorry, I don't want to scare you and I'm sure it's not this serious for you, but it's definitely something you should have checked out. It's better to find out it's nothing than wait and things get worse. I really hope it turns out that your kidneys are fine.

[drz]

In one of my pre-med classes I learned that low levels of protein in urine are normal, and a temporary rise in protein can be seen in some after strenuous exercise or during an illness; however, it is often a sign that there is something wrong with the kidneys. Having WG which often affects the kidneys, I recommend having your doctor run tests to check your kidney function. It is definitely not something to mess around with and leave untreated. I didn't experience any symptoms so I went untreated and I found out one day that my kidney was failing, fast. I ended up having a transplant in December (about a month after finding out my kidney had lost ~90% of its function). Sorry, I don't want to scare you and I'm sure it's not this serious for you, but it's definitely something you should have checked out. It's better to find out it's nothing than wait and things get worse. I really hope it turns out that your kidneys are fine.

Unfortunately Jack is no longer here to caution us but he often warned that one can lose their kidneys in a few days with out feeling any signs of distress. I saw my kidney doctor yesterday and I had some protein in my urine but I also have diabetes besides the damage to kidneys from Wegs. The sugar is more of a concern she says. My creatinine level was the best I have had in three years so she wasn't too worried about my labs but some still weren't back yet. She still wants to tinker some with my blood pressure meds to try protect my kidneys more.