Author Topic: interstitial cystitis  (Read 343 times)


  • Jr. Member
  • **
  • Posts: 57
interstitial cystitis
« on: January 11, 2017, 02:00:50 PM »
i was just wondering how many of you suffer from interstitial cystitis??  it seems to be more common among SS sufferers.  On the SS foundation website it is listed as one of the systemic complications.   i have had these symptoms for years,  Reoccuring UTIS,( so i thought)  but the culture is usually negative.   same symptoms as when i actually have a UTI.  if you do have this , does plaquinil or any immune suppresant biologic drug that you are on help with this as well?? 


  • Hero Member
  • *****
  • Posts: 759
  • There has to be humor in this somewhere!
Re: interstitial cystitis
« Reply #1 on: January 11, 2017, 03:14:12 PM »
My daughter with Behcet's suffers from IC. Non of the treatments for behcet's helped with that. She has a very good urologist who just performed a second round of botox injection. If things get to bad she goes in for weekly instalations into her bladder to calm it down. Just a warning. Twice she went to ER for very bad bladder infections that caused severe back pain. Culture of urine was negative, so they ran a ct scan and found the infection higher up causing what's called pyelonephritis. Otherwise her treatment is urelle.
MCTD, sjogren's,ra,achalasia,Issac's syndrome,MCI, acephalgic migraines, plaquenil, requip, symbecort,B2, B6, D3, spiriva, albuterol, topiramate, prozac for raynauds,synthroid,tegretol, orencia,arava,prednisone bentyl, cevimeline, xiidra eyedrops


  • Hero Member
  • *****
  • Posts: 5422
  • —if it ain't one thing, it's another." Roseanne R.
Re: interstitial cystitis
« Reply #2 on: January 12, 2017, 07:13:14 AM »
Dearest Keelton: 

I was diagnosed with IC in 2008.   I had chronic UTIs, and then after medication cleared the UTI I had horrible rebound pain from the IC, which I thought was the UTI coming back.

In fact, IC causes dead white cells to appear in the urine (from the injured lining of the bladder) and looks like a UTI on simple tests.

The PAIN of IC when it is flaring is terrible.  Heating pads help.  And I have found that the best way to eliminate the pain of IC is to exercise very mildly in a warm pool....a therapeutic pool which can be found in most health related fitness centers.  (not the kind with lots of young people in spandex).

To eliminate UTIs I take one capsule of D-Mannose daily.  I haven't had a UTI for four years (after chronic infections).  I 'thought' I had a UTI last week, which shocked me, but it turned out to be my IC flaring.  Which it hadn't done for four years.

I wish for you the best of luck in taming your IC.  The relationship between IC and Sjogren's is very close, as you know.

Hugs,  Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil