1. < Kidney & Bladder

Interstitial Cystitis - I would like to connect with others

Posted by 8dzaweek @8dzaweek, Mar 22, 2016

I.ve been told that Interstitial Cystitis is an autoimmune disease. Are there any discussion groups on this very painful condition??

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

bustrbrwn22 | @bustrbrwn22 | Oct 12, 2020

I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 12, 2020
In reply to @bustrbrwn22 "I have read Azo works for some people or Prelief. I do not have any pain..." + (show)
@bustrbrwn22

I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

Jump to this post

@bustrbrwn22, I've never used either Prelief or Azo but found a reference that you may find helpful that mentions Prelief.

Complementary and alternative medical therapies for interstitial cystitis: an update from the United States: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708547/

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bustrbrwn22 | @bustrbrwn22 | Oct 12, 2020
In reply to @hellobeth "I just started Super Strength Aloe Vera and it is helping me immensely. I have done..." + (show)
@hellobeth

I just started Super Strength Aloe Vera and it is helping me immensely. I have done & taken everything else and this is a miracle supplement!

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@hellobeth does the brand have to be Desert Harvest?

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joybringer1 | @joybringer1 | Oct 26, 2020
In reply to @bustrbrwn22 "I have read Azo works for some people or Prelief. I do not have any pain..." + (show)
@bustrbrwn22

I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

Jump to this post

Have you tried Ditropan? It worked some for my mother and my mother-in-law. @joybringer1

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daphne47 | @daphne47 | Nov 11, 2020
In reply to @bustrbrwn22 "I have read Azo works for some people or Prelief. I do not have any pain..." + (show)
@bustrbrwn22

I have read Azo works for some people or Prelief. I do not have any pain with my IC thank god but has anyone found relief from urgency or frequency with either Prelief or Azo?

Jump to this post

Azo doesn't do much for me. Havent seen the other. Elmiron has helped my flares but i am still very cautious with diet. Although at times i do say the hell with it and loosen the ropes a bit. Moderation for me is better than cutting everything off.

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bustrbrwn22 | @bustrbrwn22 | Nov 12, 2020

I tried Azo once and didn’t like how it made me feel. I read about 2 things on the NIH website that I’ll talk to my dr about: hydroxyzine hydrochloride and Linezolid. Has anyone heard about or tried these?

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1 reply
joybringer1 | @joybringer1 | Nov 12, 2020

My mother took Elmiron. She had been through laser surgery to remove lesions in her bladder (20 times!) and I saw an article in our newspaper about Elmiron and sent to her. She asked her urologist about it and he said she could try it. I don't think he knew about it. Anyway, it really helped her.
Everything in moderation including moderation! @joybringer1

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joybringer1 | @joybringer1 | Nov 12, 2020
In reply to @bustrbrwn22 "I tried Azo once and didn’t like how it made me feel. I read about 2..." + (show)
@bustrbrwn22

I tried Azo once and didn’t like how it made me feel. I read about 2 things on the NIH website that I’ll talk to my dr about: hydroxyzine hydrochloride and Linezolid. Has anyone heard about or tried these?

Jump to this post

I sometimes take hydroxyzine HCL 25 mg. when my lichen sclerosis flares causes itching. I was warned it would make me sleepy so I take it right before bedtime. It does help the itching. @joybring1

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bustrbrwn22 | @bustrbrwn22 | Nov 22, 2020
In reply to @lioness "@busterbrown I hope they work for you let us know" + (show)
@lioness

@busterbrown I hope they work for you let us know

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@lioness sad to say no luck with the aloe Vera pills. I’m going to ask my doc about Linezolid antibiotic and hydroxyzine hydrochloride as I’ve read some people have had success with on an IC forum. Anyone else try any of these?

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1 reply
lioness | @lioness | Nov 22, 2020

@busterbrown. Sorry it didn't work lots of our symptoms need trial and error . Right now Im taking L Lysine for my sore mouth don't know if it would help you or not . Good luck

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