Lupus and Interstitial Cystitis

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Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 1/24/2008 7:39 AM (GMT -7)   
Hi again everybody. This just keeps getting better and better. As some of you know I was diagnosed with Lupus and Cd all this past summer. We have now added IC to the mix. Anyone here with it? What do you do for it? Dr. talked about Cyclosporin as a treatment option and thats a bit nerve wracking to me. I feel like someone flipped a   light switch on me and everything that can go wrong is doing so rather quickly. I am also now going for an MRI as I am having neurological symptoms. Anyone here have numerous things go wrong all at the time time with a few months?

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/24/2008 8:22 AM (GMT -7)   
Hi Chaya,

Yuppers!! It does seem like our dxs come in groups. Once the docs get the puzzle pieces put together, they end up giving us lots of bad news. The good part is that once they name it, they can usually start to treat it. I'm sorry you are having so much trouble sis . . . I hope you'll post when you get the results for the MRI.

I don't know anything about IC, but there are some others here who do. Hopefully they will see your post and offer some help. I just wanted to send you a hug and some hot tea!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 1/24/2008 11:32 AM (GMT -7)   
Thanks Rosie.......The IC is driving me to insanity. I feel like I have fire ants crawling around my urinary system. It was annoying before the cystoscopy but the check for permiability has made it rear an ugly head I wasnt aware it had. Its like the worst UTI x's 10 .

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/25/2008 7:50 AM (GMT -7)   
OH NO! Call your doctor and tell him so he can suggest a remedy. Oh . . . poor thing . . . keep us posted on how you are doing, ok?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


ocean1
Veteran Member


Date Joined Dec 2006
Total Posts : 707
   Posted 1/25/2008 7:44 PM (GMT -7)   

Hi Chaya.

I'm one of the ones with interstitial cystitis.  I kept thinking I had bladder infections and kept getting put on antibiotics and nothing seemed to work and saw a urologist who did a cystoscopy (oh, isn't peeing comfortable after one of those - NOT - I felt like I was peeing sharp knives for a couple days).  I've been where you are.  My urologist wanted to put me on meds but with my liver disease I can't take most of them because they are absorbed by the liver and could do me a lot more damage than good.  My urologist gave me a prescription for Urased to help with the burning/pain/feeling like I have to go all the time.  I also bought some over-the-counter med and keep it handy as well.  My urologist also told me to buy cranberry tablets and to take two of them each morning with lots of water.  Thankfully, doing what he suggested has helped me quite a bit.  I hope you can find some relief.  I know exactly how you are feeling right now.


Diane
________________________________________
Lupus 2008; Primary Biliary Cirrhosis 2007;IBS 2004; Chronic Hives 2002.
Medications:  Allegra, Zantac, Ultram PRN, Xanax, Darvocet, Ursodiol.


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 1/25/2008 8:10 PM (GMT -7)   
Ocean that post meant the world to me tonight. I am laying in bed and I swear I have fire ants crawling throughout my entire urinary tract . I am on oxycodone and I ABHOR the way I feel on it but it is better than the ant hill. When I woke after the cystoscopy I was writhing in the bed with pain. DR. said he was sorry but sometimes they have to make it worse before they can make it better. When the potassium went in I felt like he had lit my entire insides with burning coal. Thank G-d!!!!! They knocked me out with a mask ASAP. I also have been treated for UTI's since August and have been using organic cranberry caps, no caffiene, no soda, you name it and I will say the no soda has made a slight difference. I pee all night long and that mixed with steriods for Lupus my nights are much akin to a nursing mothers nights. This entire trip was triggered by a walk in the sun with my daughter. I came home and within an hour had the malar rash and that was the beginning of this lovely journey. Thank you so much again for your post. Nice to know I am not alone.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/25/2008 9:14 PM (GMT -7)   
Hi Chaya:

Just wanted to send some well wishes your way. Sorry you're feeling so poorly. Hope the doctor can get a treatment plan for the IC really soon. You take care of yourself and get as much rest as possible.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Chaya
Regular Member


Date Joined Mar 2007
Total Posts : 194
   Posted 1/25/2008 9:49 PM (GMT -7)   
Thanks Barb,

I am laying here in bed hitting refresh every so often reading ppls posts. Thanks for the support. Its nice to have a safe place to go where everyone fully understand everything I am saying.
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