Recurring UTI or is it Internal Cystitis?

Before Enbrel, I think I can recall ONE incident of a UTI, now it's constant, even though I haven't taken any biologic since Jan 3 of this year. The earlier test did show infection, but starting to wonder now...

Was supposed to go to GP for sample to be sent to lab. I am allergic to all of the key antibiotics to rid me of this infection. I'm just wiped out! UGH!

Tomorrow I MUST go!

How weird. I really feel for you. They hurt badly and the AB’s tire one out. I’ve been getting them a LOT lately as well and have one right now. I’ve always been somewhat prone to them and would get two or three a year. However, lately they are coming fast and furious. AND I get pelvic floor dysfunction with most of the infections. This involves crazy muscle (or nerve???) pain in the pelvic area likely caused by tightening up those muscles. In the past, Macrobid worked like a charm for the infection, but now I’m not so sure. Are certain AB’s working better for you than others? I also have many allergies to some of the AB’s that one would normally take for a UTI. Can you take Macrobid??? What will you take to get better??? I just did low immunity testing Monday. Those tests should come back I’m thinking in a week. What does your doctor think is causing this? I haven’t heard of SS causing bladder infections. I have heard of it causing IC. I think I might have a mild case of this. The cranberry pills, for example, seem to bother me and I know they bother IC patients. Have you heard of a tablet called Prelief? If you take one before questionable/acidic foods like coffee, it can calm a painful bladder/prevent additional irritation. I only drink two 1/2 cups of coffee a day, but if I have an infection or any bladder symptoms at all, I take a Prelief tablet before and it helps. I’m in a bad way lately, as I have been feeling so poorly and it is largely due to sinus, bladder and TN issues…so I am in much pain and live at doctor offices.
PS I’m sorry you are feeling so poorly. Thank you so much for monitoring this site, you and the others who post here have really kept me going in the last several days.

Hi Nomad,

Thanks for letting me know about this med, I'll be sure to ask about it! It doesn't say that it's part of the Levaquin/Cipro group, so maybe this will do it?

Yes, this is really a drag! Must be in the kidneys too, I mean I have terrible lower back pain always, but it's just been much worse and different! It's been difficult to stand up straight!

Thanks Nomad, it's good to be here. I was one of the first members to join when we spun this off of the Fibro and Lupus sites, but got so involved in the Fibro site, that I just couldn't get here!

Here's an idea what I put into the Fibromyalgia site, I posted 5,319 discussions, and have 889 friends! I have also been part of Lupus and Psoriatic Arthritis sites as a mod, so there's some action there too!

So I'm here to help build this site, of the four groups I took on, this is the one really responding, and growing by leaps and bounds! It's a great bunch of people and I am very pleased to be here with you!

I am allergic to many antibiotics as well.

Wow weird! I currently have a bad UTI myself and my labs are all screwy… White cells high, low lymphocytes, iron low and urine is full of white cells and they have me on bactrim DS

Ohh, I feel for you girl! I cannot take Sulfur or any of the Cipros/Levaquin antibiotics, so God knows what they will give me or how much it will cost! UGH!

Hope this med does the trick for you and you are well soon!

Sending good thoughts for health your way,


Niki, sorry to read this. Did your UTIs increase with SS? SK, I hope you can take Macrobid. I’ve been very sick the last several days with various things and I suspect they are somewhat SS related.

I'm seeing my GP at his other office this morning. I'm taking the sample with me, that way I don't have to deal with a line of people trying to get in the bathroom the minute I get in there! It's just always the way it works.

Since I need to see an eye specialist familiar with Sjogrens and Plaquenil, it's just best to 'see him' rather than speak to him through the receptionist!

Time to go get ready!

I had a problem with reoccurring UTIs I while back. I was also getting horrible pains in my side so bad I'd end up in the hospital. But by the time I saw the Dr. the pain would be gone. At one point the hospital kept me overnight b/c the infection spread to my Kidneys (which can be fatal). They said I probably had a kidney stone, but I must have past it. After 3 months of this one Dr. sent me in for a scan. They discovered I did have a kidney stone but it would move around. That's why the pain would come and go. The UTIs were being caused by the stone that was stuck in my system. They would give me antibiotics and the infections would get better, but then they'd just come back.

The Dr. said they would have to operate as it was so big that even if it was half the size I would only have a 50% of passing it.

That was about 8 or 9 years ago, before my SS diagnosis. I've had 2 verified stones since then. The last scan I had showed I have dozens that are stuck to the walls of my kidneys.

Even though my Dr. hasn't said it, I think this is related to my SS. Since the reason the crystals stick together and make sones is because there isn't enough water in the kidneys to flush them through.

Has anyone heard anything about SS causing kidney stones?


SK, I hope your feeling a little better and this UTI thing is getting better …NOMAD, no i havent noticed that My UTI’S have increased since my diagnosis of SS but now that u have said that, i think back to when i started having all these UTI and Kidney infections and it seems like it did start when I started getting symptoms of the joint pain, etc… Hmm they should do much more research on this i believe :confused:

Sorry I've not been here as much as I'd like, between the infection and the continuous antibiotics, I'm just DOWN!

My concern at this point, as I expressed to my GP, is that during the time my mom was in the hospital, and nursing home I was on Enbrel, and my fear is that I picked up something in their bathrooms that is antibiotic resistant!

So I get to the pharmacy and what do you think the prescription is? Suprax!, and it's in the Penicillin family! Guess what, in the past I have had allergic reactions, so I discuss the problem with the pharmacist. The problem being that I'm allergic to Sulfur, had achilles ruptures in both legs from the Levaquin/Cipros. I am at the other office meaning no records there, so he misses that allergy! So the pharmacist asked how long it's been since I have taken Penicillin, and do I want to 'try it'. I've got to try something!

I had the sinking feeling I'd be playing with fire and gasoline, and here it is, and there's a chance there will be another antibiotic introduced when the labs get back! So for now I'm on the Penicillin and Monistat trip! UM BOY!

Sorry you are so under the weather SK.

I’m so paranoid of germs lately, I take Wet Ones Wipees with me wherever I go. I wipe tables at restaurants down before I eat, etc. when we travel to see our son and his family, I try to squat/stand when using the public restroom. When I don’t have the strength for that, I wipe the toilet with the Wipees first. Then I wash my hands like crazy. At home, I have non lanolin , paraben free, often organic pump hand soaps as my hands were getting very dry. I find these types of soaps aren’t as drying. I take a Macrobid tablet before “relations” and that has cut down on infections. However, I am getting infections now out of no where. And I have cut back on “relations.” I understand menopausal women are more prone to these infections. My gyno doc wanted to give me Estrace cream, but it burned me. Some say if you replace estrogen “down there” it helps prevent UTI. Since I also get pelvic floor spasms, the pain for me is through the roof. I have heard I can get Botox "down there " to lesson these spasms, but I’m afraid. I have one tiny kidney stone and have not heard of SjS causing them. (But my doc told me very little) Im seriously tired.

I know, I am always scrubbing public toilet seats, but some things just cannot be 'scrubbed away'! With my lower back so eaten up, hovering is just out of the question unless I have gymnastic parallel bars to hang onto! Now can't you just picture that? LOL!

What we go through is really NOT funny, but sometimes you have to laugh at the absurdity of it all!

Yet another sleepless night! I guess I'm gonna have to pull out the 'knock out pills'!