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Discussion Starter · #1 ·
I was recently diagnosed with Interstitial Cystitis--just one more thing to cope with. I was wondering if it is more common in those of us with SLE. Also, is it possible for this inflammation and pain to move up into my kidneys? I'm pretty scared about where all of this is going.:sad:
 

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Hi Cher,

Sorry for your diagnosis. I haven't heard much about IC. After googling it, I understand what it is and how they can treat it.

But there was no mention of it affecting the kidneys.

Your best bet is to ask our doctor, they can give you more accurate information.

Take Care
Good Luck
 

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IC and Lupus

Cher,

I just saw your post about IC. I have been treated for it for 20 years and in the last year was told that it might be lupus in my bladder not IC by the IC specialist at U of Maryland:eek:

Unfortunately IC is another one of those elusive autoimmune diseases that is difficult to diagnose and treat. When I moved to Maryland and started with my current urologist, he thought it was "interesting" that I had lupus and that there was a "possible" connection, but not one that he was investigating or aware of anyone else investigating. He is actually working on an implantable electrical device for the pain in the bladder for IC patients.

He did a new biopsy because I had not had one in over 10 years, during which my lupus had really accelerated and we were both curious if there was any relationship. Pathology showed that there was. Does that mean I was incorrectly diagnosed before? I don't know...

There is an IC organization at ic-network where you might find some information. I found them immensely helpful when I was first diagnosed and learning about the disease and my treatment options, which were VERY limited 20 years ago.

As with lupus, it's important to find a well informed urologist who is experienced in treating IC. There are also now specific protocols for biopsies for IC that are different than "normal" bladder biopsies.

I know there is another woman who was involved on this board who has both lupus and IC but I don't know if she is involved any longer...We corresponded a couple of years ago.

I wish you much luck and peace. I can offer you that my bladder is BETTER now than it was 20 years ago so IC/lupus in the bladder/whatever you call it is definitely not necessarily progressive.

Vickie
 

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Cher,

Some patients with autoimmune diseases will end up having more than one even though they aren't necessarily connected. If you ran a poll on this site you would think it is common to have multiple auto-immune diseases. That is because active members tend to be on the very sicker end of the lupus spectrum. I hope you get effective treatment for your IC.

Take care,
Karen
 

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Hi,

It's been awhile since I've posted, but I wanted to reply and let you know that I too have Lupus and IC. I was very interested to read the reply about it possibly being lupus in the bladder. I had a cystoscopy (which was extraordinarily painful for me), and the dr. saw inflamed blood vessels. I wondered about that in relationship to Lupus...

Anyway, wanted you to know there are others of us out there, and offer support!:)

Mine comes and goes - the flareups seem to correlate with my lupus flareups.

Lisa
 

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IC and Lupus

I have had IC for 3 years and have since progressed to a diagnosis of UCTD (positive ANA and low C3, C4 -- maybe Lupus). It is only recently that they are considering IC as an autoimmune disease. They just did a Stage III trial for patients with IC on Cellcept. I think it didn't show very promising results but the literature is not out yet although the study is finished. A lot of people with IC have joint pain, chronic fatigue and headaches. I have gone through the gambit of IC treatments so let me know if you have any questions. From what I have researched and read IC does not progress to your kidneys BUT your Lupus can affect your kidneys...

Let me know if you have questions. Stacy
 

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Discussion Starter · #7 ·
Thanks for your reply, Stacy. As a matter of fact, I do have questions. I'm on Gabapentin and Elmiron for the IC, which the doctor said would take several months to help me. Will I ever be completely free of the IC? Or is it like Lupus in that it will always be with me. Also, how do you manage to ride any distance in a car? It is excruciatingly painful for me, so needless to say, I have curtailed my social life considerably.
 
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