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Sjogren's Syndrome Support

Sjögren's syndrome in patients with interstitial cystitis

I have this and I never thought it went with SS.

Anyone else?? read below.

Sjögren's syndrome in patients with interstitial cystitis.

1Department of Immunology, University Hospital Dijkzigt/Erasmus University, Rotterdam, The Netherlands.

Abstract

OBJECTIVE:

Patients with interstitial cystitis, a chronic nonbacterial inflammation of the bladder, were investigated for the presence of systemic autoimmune diseases, in particular for Sjögren's syndrome (SS).

METHODS:

Ten patients were included in the study on the basis of a diagnosis of interstitial cystitis according to usual criteria. They underwent clinical and laboratory investigations including those for keratoconjunctivitis (KCS) and focal lymphocytic sialoadenitis (FLS).

RESULTS:

In 2 patients both KCS and FLS were present allowing the diagnosis of primary SS according to classification criteria. Additionally, in 6 patients one of the 2 hallmarks of primary SS was present, KCS in 3 and FLS in 3.

CONCLUSION:

Interstitial cystitis is a new example of a disease that occurs in association with SS, supporting the concept that interstitial cystitis is an autoimmune cystitis. The clinical relevance of the finding is that a high index of suspicion for SS is indicated in patients with interstitial cystitis

It's a really small study, but potentially interesting.

HI Country girl,

I'm not sure how up to date this info is, but here's a link to the Sjogren's Foundation about IC.

http://www.sjogrens.org/files/brochures/BPSeducationsheet.pdf

http://www.essic.eu/pubmed_IC_Sjogren.html

Thank You SK!

wow so right on with my symptoms and it took a long time for the Doctors to DX IC and this is exactly my symptoms and now I have a better idea whats going on, I don't feel so in the dark....also it gives advice to help change diet to help decrease symptoms!! Thank You!!

SK said:

HI Country girl,

I'm not sure how up to date this info is, but here's a link to the Sjogren's Foundation about IC.

http://www.sjogrens.org/files/brochures/BPSeducationsheet.pdf

Have they referred you to a urologist, Country girl? If not, it's something to consider! I know it's one more Dr to see, but sometimes necessary, and in the long run, more beneficial and less time consuming!

BTW, there are many members of our Fibromyalgia group who suffer IC. Though I am not a medical professional, I strongly suspect that many of those members are still under diagnosed, and autoimmune is present...

http://onlinelibrary.wiley.com/doi/10.1046/j.1442-2042.10.s1.10.x/pdf

Pretty sure I have this. A trip to my Urologist was pretty useless. I don't think he has seen much of this. They did a scope and found nothing. I did a search on urethral pain and found a site that suggested some natural supplements to help balance the ph balance of ones urine. It's nice to know I'm not crazy.

It is a well known - by intelligent SS medics ( is there such a thing?) - I have it including urethritis but a urologist refused to accept it as I am male and he knew nothing about SS and said 798 OUT OF 800 OF HIS COLLEAGUES WOULD KNOW NOTHING ABOUT SS EITHER!

See this link.Interstitial Cystitis and Associated Disorders

Ony effective treatment is low dose ciclosporin.

http://www.ncbi.nlm.nih.gov/pubmed/21258795

http://www.ics.org/Publications/ICI_3/v2.pdf/chap23.pdf

http://www.ncbi.nlm.nih.gov/pubmed/15098610

Sory to be so brief but have massive issues here with health and other probs.

Sorry to be rude but no time to expand show this lot to your medics please. :)

I have chronic problems with interstitial cystitis. I can deal with flareups by cutting back on alcohol, caffeine, citrus, salsa and heavy spices. I also drink more water to flush the system.

I believe I have a mild case of this ( ongoing) but have had a few bad flares. An OtC med called “Prelief” helps me significantly. I also have occassional pelvic cramping pain associated with this; sometimes called pelvic floor dysfunction. Hurts like hexx.

I have chronic problems, and had two surgeries to clear out the lining of the bladder...now anytime I have the feeling of discomfort, I'm supposed to start on Macrobid, and pyridium, my urologist gives me a script every year with unlimited refills. Back when I had the surgeries, I had no idea I had SS.

assybish may have already posted this one, but just in case...

http://www.ncbi.nlm.nih.gov/pubmed/8627830

Oh elizabeth, sorry you have had to go through two surgeries for this, did it actually help?

I too am sorry to read of surgeries.
I can’t stress enough how much the Prelief helps me. I take it before drinking coffee or anything extra acidic. And then if I do have some pain, I take pyridium. I check for infection often and get it treated even if is a minor one. However, knock on wood and crossing myself, I haven’t had an infection lately. I use a specially made Valium Vaginal Suppository for the pelvic spasms. I requested this and I thought my doctor would fall over when I asked for it! It does help a lot.

For a short while it did as far a pain, but I don't think I'd recommend it or do it again. I think again, no one "knew" it was probably a part of the SS, and all the other various diagnosis's I've gotten over the years.



SK said:

Oh elizabeth, sorry you have had to go through two surgeries for this, did it actually help?

Thanks for the heads up on the Prelief, I'm going to order some right now! Just read the reviews on Amazon...had never heard of it.

Nomad said:

I too am sorry to read of surgeries.
I can't stress enough how much the Prelief helps me. I take it before drinking coffee or anything extra acidic. And then if I do have some pain, I take pyridium. I check for infection often and get it treated even if is a minor one. However, knock on wood and crossing myself, I haven't had an infection lately. I use a specially made Valium Vaginal Suppository for the pelvic spasms. I requested this and I thought my doctor would fall over when I asked for it! It does help a lot.

Yes I did and He said that's what he "thinks" I have and I was on medicine that helped, but I had side effects. The other medicine he wanted me to try was too serious, so I have just learned to deal with it. Over the years I really wondered what I had, "second guessing" because there was other DX's floating around. However when I read the article it was so right on....the article you sent! It was like wow I am getting some many answers now that I have been DX with sjogrens its amazing what goes along with it.

SK said:

Have they referred you to a urologist, Country girl? If not, it's something to consider! I know it's one more Dr to see, but sometimes necessary, and in the long run, more beneficial and less time consuming!

I see I am not alone on the pelvic pain because its the worst for me!!!