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Interstitial Cystitis (IC) Message Board

Lupus and Interstitial Cystitis

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Old 10-01-2002, 07:12 PM   #1
Junior Member
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LeslieAnn HB User
Post Lupus and Interstitial Cystitis

I was wondering if anyone has ever been diagnosed with Lupus AND Interstitial Cystitis. I believe there is a definite link between the two and I wonder if I don't have "IC", but that the Lupus is causing the bladder inflammation. I really think it is quite coincidental that I've been diagnosed with two "rare" incurable diseases within a few months of one another. Thanks!

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Old 10-06-2002, 11:19 AM   #2
Denise F
Join Date: May 2002
Location: Ohio
Posts: 222
Denise F HB User

Yes. I think it's probably connected too. Lupus can
cause inflamation. I have had both urinary infections
and yeast infections. When you have lupus you can be
prone to all kinds of infections. It takes me a long time
to heal also. The body can do weird things when Lupus
is in the picture. I've had inflamed lungs and blood
vessels and other things you usually don't hear about.


Old 10-06-2002, 03:34 PM   #3
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LeslieAnn HB User

Thank you for your reply! I was wondering what the symptoms of inflamed blood vessels are. I have pretty severe Raynaud's. I've had it since I was a little girl. I bruise VERY easy and it takes weeks to heal. Sometimes when I get to warm (like right out of a hot shower or if in a hot room) the veins in my arms start to bulge. This started happening right around when I was diagnosed. I know it sounds strange, but it has never happened to me before. Sound at all familiar? I do have blood clotting problems (although I've never had one). I'm on a daily dose of aspirin for that. Any info would be greatly appreciated! Thanks!

Old 10-08-2002, 03:19 PM   #4
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Posts: 257
BlessingsGalore HB User

I have Lupus, Fibro and YES I had an unbelieveable bout with IC. I do not have it anymore.

For two years, I would go into the hospital and have a Chlorpactin treatment put into my bladder and I would get immediate relief. After doing this every 3 months for about 18 months it went away.

It is a horrible disease and I was suicidal with it...real bad. YES, I believe they are all connected and interwoven.

Health and blessings,

Blessed <><

Old 10-08-2002, 04:49 PM   #5
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Join Date: Sep 2002
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LeslieAnn HB User

Thank you for your information on IC. I have been on Elmiron for just about 1 year. I did have a bladder distention a year ago, but that was before my Lupus diagnosis. Every time I would apply an estrogen patch, my bladder would go spastic. Every dr. said there was no connection between hormone therapy and IC. I believe the patch was trigerring the Lupus and then the lupus would cause the IC. I know what you mean about being suicidal. Until you suffer the pain & urgency of IC, you don't fully understand the devistating effects. Well, I've been responding very well to the Elmiron. I may have to discontinue it cause now I'm getting elevated liver enzymes. We'll see. So far I'm hanging in there! Thanks again and blessings!

Old 10-12-2002, 01:48 PM   #6
Join Date: Apr 2002
Location: Atlanta, GA , US
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scbagrrrl HB User

Our mothers have great taste - my name is Leslie-Anne too!

Unfortunately, I have SLE, Raynauds, RA, Sjogren's, and a host of other problems as well. My doctors have been on the fence about dx'ing IC. (It's not like I want it!)

I wanted to share something about the Raynaud's since it's getting to be "the bad season" for us... A doctor recommended me taking "red pepper flake capsules" and eating a lot of spicey food. It helps with the circulation and it made last year a little more tolerable. I'm not sure if you can manage the spicey stuff with IC...

Old 10-22-2002, 09:31 AM   #7
Join Date: Aug 2002
Location: Jacksonville, FL USA
Posts: 7
navyboyzchick HB User

yup, I have lupus and fibro. i was dx'd with CI just yesterday, actually. I'm sure there's a connection...there are too many things that people with the sams dx's all have.
~ navyboyzchick

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