I was dxd with SLE about 10 years ago and just recently found out I have sjogren's syndrome. I have mild symptoms...dry eyes and mouth. I was on plaquenil already for the SLE, but it doesn't seem to help my sjogren's symptoms. In the past year I've had about 5 urinary tract infections, so last month, when I felt another UTI coming on, I went in for a urinalysis. There was no infection...I had symptoms of urgency, spasms, frequency, the whole bit, but without the infection. I used OTC uristat and got some relief. Then last week the same thing happened again. Tests were negative for a UTI but the symptoms were there again. I emailed my rheumatologist and she said there is a connection between sjogren's and bladder issues like I described, but that there wasn't anything we could do about it.
I teach high school math and unfortunately can't just leave to go to the bathroom whenever I need to, which makes the anxiety over the symptoms that much worse! My GP prescribed Ditropan (oxybutynin) to help with the spasms, kind of contradicting what the rheumy said about there being nothing really we can do about it. It seems to help a little bit, but it's another drug in a long line of drugs I'm now taking and the sheer volume of meds I take is getting to be overwhelming.
Here's my question: is anyone else out there with Sjogren's syndrome experiencing bladder issues? and if so, what do you do about it or what has your dr said about it?
I'm wondering if there comes a time when all these "little" symptoms add up to a point where I ask for something stronger than the plaquenil to try to show the antibodies whose boss.
Any help/responses would be greatly appreciated! Thanks for reading.
Michelle, I have bladder spasms and symptoms of UTI's but the cultures are usually negative, the dip test positive. My Kaiser rheumotologist says I do not have sjogren's because my ANA was negative, but said I have sicca syndrome. I have the extremely dry eyes and mouth. Actually, years ago was diagnosed with MCTD. I had the malar rash of lupus and get big ringed rashes on my back and legs. Whatever, anyway, so I don't have the diagnosis of sjogren's.
I have to drink tons of water. I panic actually if I don't. The drugs given to me actually dried me out more, so I stopped that. If I get symptoms and I don't think it is a UTI I take an alka seltzer. It will stop the symptoms Sometimes I take those litle brown pills that numb the bladder. I also started taking the cranberry pills.
I just live with the spasms. Sometimes they go away for awhile only to return. Because I also get severe body cramps I will take 1/4 of an ativan every few weeks. I hate drugs as you can probably guess.
As far as what my rheumotologst says, he is clueless to most everything unless it is black and white. He just doesn't have much experience as a rheumotologist. Very frustrating. The Sjogren's Society is a lot more helpful and the volunteers will talk on the phone and sent out a packet.
Thank you for the response Mel.
My very 1st symptom of anything autoimmune related was actually way back in 1989. I had immune mediated thrombocytopenia which came out of nowhere. My ANA was negative at that time. It wasn't until about 15 years later and umpteen different symptoms developed that my ANA turned positive. The minute that happened I was given the dx of SLE and prescribed plaquenil. Now another 9 years later, other symptoms continue to develop and new tests have started turning positive, such as the SSA, anti Ro, and anti RNP. I swear every time I go to the rheumatologist another test has flipped positive which means more symptoms and/or more meds. It's been crazy. In the last year I've found out I have APS (taking daily aspirin now for that) and Sjogren's (already on plaquenil for that). The bladder issues have just started to become bothersome.
So thank you for the advice to call the Sjogren's organization. I didn't realize that I might actually be able to talk to a volunteer. Great idea.
Thanks again for the information. I appreciate the response.
Michelle, My symptoms began in 1989 also as the results of a ruptured breast implant but not found until 1992. By then I was heavily into fibromyalgia and all kinds of symptoms like sjogren's and lupus. I was pretty stable until 2005 when I was injured at work and had to have wrist and back surgery. Everything changed for the worse, but the dr says it is just the fibromyalgia getting worse. I don't think that caused the eyes to get even drier, excessive thirst, increased sweating and the bladder problems. It is so frustrating. I developed symptoms liked m.s. and even went through the spinal tap. I have unusual calcifications and abnormal shrinkage in my brain that could be connected to sjogren's but the rheumotologist said he defers to the neurologist who only specializes in ms. Another neurologist said I might have ms or alzheimers but there is nothing that can be done so go live life. Ugh I wish I didn't have a HMO. Sometimes I just want a solid diagnosis to take away the fear factor. Frustating isn't it?
You're right, Mel, it's extremely frustrating. Just because drs don't agree on the theoretical side of what might or might not be a symptom or a dx, we who are experiencing the real, everyday side of things fall into the cracks and are told completely conflicting information. I have the dxs of lupus and Sjogren's, and have basically been told that there isn't really anyting we can do about the Sjogren's except treat the symptoms. Sooooooooo....I'm now having bothersome bladder issues that are interfering with my quality of life, not to mention (but I will again!) that I have a job which precludes me from using the restroom immediately when I need to, and I'm told there's nothing really we can do about it? That doesn't seem right. I'm going to keep on digging. I've had to be my own advocate this far, that's for sure.
Good luck in your quest for answers! Thanks for the response.