Bladder problems and Sjogrens

[Pbrain]

Two ys ago when I was active on this board, there had been several discussions about members' bladder problems, with all of us trying to figure out why and what to do about it. Out of all the boards for possible and actual medical diagnoses I've participated on, this one was the only one where others actually shared this specific problem.

In short, switching to prednisone last year resulted in an almost immediate resolution of my bladder problems (usually nocturnal, worse for two weeks during and after ovulation: sometimes bladder retention which at its worst, I couldn't urinate, and lack of bladder sensation-I couldn't tell it was full). My Endo did a happy dance, shrugging off that they (none of my doctors) didn't know why it had helped,that I was so much better. With this recent, sudden onset flare involving loss of balance, lack of bladder sensation returned. At The Same Time. With a small increase in prednisone for several days, my balance has improved and now the bladder sensation is back to normal!

I'm sooooo thrilled! For two reasons. One, because I'm better (obviously). But two, because it supports my hypothesis that my bladder problems were related to my autoimmune problems. Nobody for the last umpteen years would listen to me. My bad Endo reduced my cortef in 2012 and I experienced immediate worsening. Problems continued, on and off, at its worst (after my dog died) I couldn't sense my bladder AND couldn't go, ending up in the ER. A supposed urology specialist (well, in pelvic floor dysfunction, apparently the only thing he was capable of diagnosing) had insisted it was due to rigid pelvic floor muscles (even though I wasn't experiencing bladder problems at the time he said my muscles were rigid?!). Also, I discovered that he'd been altering my report of symptoms to match his diagnosis-despite my repeated explanations re the timing of my symptoms, he kept writing that my problems were chronic. I finally realized that (why see him in the first place? My gen uros never knew what was causing my problems and the last one had referred me to this "specialist". At first, it had sounded good...until I recognized the incongruities). Neuros never knew, the rhems (unfamiliar with Sjogren's) wouldn't recommend an increase in steroids for a bladder problem.

Anyway, I believed, and now more strongly believe, that steroids help with this stupid bladder problem, for whatever reason (inflammation of something caused by something-vague enough to be open to hypotheses!). 

Summary: When I was in the hospital in 2002 and was catheterized because I couldn't urinate-high dose steroids resolved the problem. Stress worsened the problems (just like with my autoimmune symptoms). Reducing steroids (cortef at the time) worsened bladder problems. Prednisone improved. Flare-worsened along with balance. Increasing prednisone-improvement of bladder and balance.  I rest my case.   

Anyone else seeing a similar pattern?

[Jasper]

I have had bladder problems for years and I am sure they are related to the inflammation from the Sjogren's. I feel that the bladder symptoms are from Interstitial Cystitis, which many people with Sjogren's have. Below is why I think this.

I cannot remember when my symptoms started, sometime in the 1990s. The symptoms were urinary frequency, urinary urgency, urinating a lot at night (2-4 times per night), and pain above the pubic bone (pain was like I had an extremely full bladder and was constantly driving over a bumpy road). They gradually worsened over the years. No one had any idea why I had the symptoms and most PCPs just ignored them or said I was just getting old.

In August 2013 I started taking a very good formulation of Curcumin. I was taking this to try to reduce the inflammation and pain in my joints. Within a month, the bladder symptoms resolved. I went from using an entire roll of 500 sheets of 2 ply toilet paper a day to using a roll every 3 days. I was able to sleep for 6-7 hours a night without waking up to urinate. The pain above the pubic bone completely disappeared. The urinary urgency disappeared.

Therefore, since the Curcumin is an anti-inflammatory, and the bladder symptoms all disappeared after starting the Curcumin, I am sure that the entire bladder problem was inflammatory in nature and due to the Sjogren's. If I go off the Curcumin for any reason, the symptoms start to return. Then they disappear again when i resume the Curcumin.

In addition, I have noticed that when I am in a flare, I dribble a little. This only happens when I have flares. I have no sensation that I have to urinate and my bladder is not full. I do not feel like I have to go at all. It just leaks a little, without warning, and I know about it only because my underpants get a little wet. This is not much urine, but it is a little dribbling. Again, because it only occurs when I have flares, I am sure this is due to inflammation (so Sjogren's related).

[Carolina]

Hi Pbrain and Jasper,

I have IC, Sjogren's and a host of other conditions.  Prednisone (Medrol) has helped, and so has Gabapentin.

i have profound Peripheral Neuropathy and also Small Fiber Neuropathy.  I also think that my bowel and bladder issues are related to autonomic neuropathy, as well.

So, remember that up to 50% of Sjogren's sufferers also have IC.

And that a constant dose of Prednisone is so damaging that only life threatening conditions warrant it.

Hugs,  Elaine

[Pbrain]

My problem isn't IC either but I'm glad you've found that the steroids help, too! Carolina, if you're referring to me-adrenal insufficiency actually can be life threatening which is why I take steroids daily. Otoh, the dose is meant to be physiological in order to replace steroids my body doesn't make. Only under stressors (physical, mental or physiological) do we take more. Luckily, the prednisone (at the correct dose) works (and even better than the cortef; I think someone said that the prednisone has better antinflammatory effects) to fix my bladder!! (The rheum wouldn't increase the steroids because she refused to prescribe medicine for my bladder...even though she should by my definition lol be able to treat whole body problems affected by inflammatory processes but whatever)

[Sleepy In Seattle]

Add me to the list. For years I had a very "sensitive" bladder...no leaks but it always hurt/twinged - ESPECIALLY when I ate tomato sauce, coffee, etc....and I had to get up 3-4 times a night because if there was even a Tbsp of pee in there, I couldn't sleep.

Then I got diagnosed and onto treatment for Lupus/Sjs, and the symptoms disappeared. Plaquenil helps a lot, Mtx even more, and prednisone in a flare. Turmeric helps too.

Mine sounds more like trigionitis, which is similar to IC. Had tons of tests but nothing conclusive. I also had tons of bladder/urethral infections over the years...if I had to guess, I'd say the chronic inflammation made the whole area more vulnerable to infections that wouldn't take hold in healthy tissue (same way a cut or scrape makes your skin more apt to get infected). The infections all but went away after treatment, too.

Just another fun aspect of this stuff.  Especially when it's not something that is documented in the standard literature - yet it's obvious from patients' experience that it is ABSOLUTELY part of the disease process for many, many people. Thank goodness for forums like this where we can share our experiences!!!! 

[Carolina]

Just a mention again of D-Mannose to prevent UTI's.  IF you can tolerate it, of course.

Hugs, Elaine

[Nomad]

I tried taking Curcumin and it caused upset stomach.  How much is needed to help with inflammation of the bladder or any other major inflammation and are we allowed to mention brands on here? If so, what brand (s) have been helpful for folks? Thank you.

[irish]

I am curious if you have found a doctor who would place you on immunosupressants to help stop the autoimmune attack on your body. The balance issues are very common with autoimmune and and wane and ebb.

Do you have Sjogrens or any other diagnosed autoimmune diseases? That would make it more likely that you could get immune suppression. I think, but then who knows!!! Getting treated for autoimmune can sure turn into a crap shoot can't it. Good luck. Irish

[Jasper]

I started taking 400 mg of Curcumin  a day (Super Bio Curcumin from Life Extensions, which I buy on line). That is the dose I was taking which got rid of ALL of my bladder symptoms.  A few months  later I increased the dose to 400 mg twice a day, but that was because I was in a flare and wanted to see if the increased dose helped the flare symptoms as well as the joint and tendon pain and aches. The frequency, urgency, night time urination, and supra-pubic pain has been gone since abut a month after I started the initial 400 mg a day dose. So 400 mg a day fixed my bladder symptoms.

The thing about Curcumin is that it is very difficult to absorb so one needs to have an appropriately formulated product or it won't absorb. I did a lot of research to try to fine a reputabl;e company. The Curcumin I take is BCM-95 Bio-Curcumin  from tumeric root standardized to 95% Total Curcuminoids Complex. It is made by Life Extensions.  (I had tried a different brand earlier, while waiting for the Life Extensions brand to come in the mail, and the first brand I tried had no effect on the bladder symtoms and very little effect  on any of my other symptoms.)

In addition, I take the capsule with meals (not just with a snack or milk). I take it with a full meal. That decreases the chance of gastrointestinal upset (which i do not get if I take it with food).

[Deb 27]

Jasper, thank you for this post. I am sorry you have this but I've been having problems as well. I have suffered from actual UTI's but I also suspect I've had IC. My PCP thinks so as well b/c I've had such horrible pain with one UTI.  My PCP was so nice and even offered pain killers. She could tell I was in pain b/c they don't usually offer pain meds. LOL

It's good to hear curcumin works for some people.  I have a sensitive stomach and am hesitant to try. I even have trouble with fish oil. Evening primrose works ok though. 

[bartolo]

Steroids may help in interstitial cystitis. As far as I know, the diagnosis of IC can be confirmed only by cystoscopy.

Having problems with awareness of the bladder fullness can speak for pudendal nerve damage/neuropathy from some reason...

But there is really a long list of causes of frequent urination (with or without pain)
http://www.ehealthstar.com/frequent-urination.php

[Carolina]

Yes, bartolo is right.  Only cystoscopy can identify IC.

Hugs,  Elaine

[Tharrell]

My daughter was diagnosed with IC by a different method. The urologist made an infusion of vinegar water and poured it into the bladder. The pain was immidiate which confirmed the diagnosis. Later on the doctor tried under general anastethia to stretch the bladder by pumping it slowly full of liquids, but unfortunatly her bladder was already so scarred that he could not get past a half a cup of liquid.
So there are different ways of testing for IC.

[rnathans]

As Tharrell said,they now, and even 5-10 years ago, were starting to diagnose IC by placing a solution in the bladder. If it causes pain you have a dx and they immediately can put in another solution to relieve the pain.