Interstitial Cystitis: Anyone have symptom relief tips?

Posted by januaryjane @januaryjane, May 6, 2020

Ive been diagnosed with IC for awhile and am on Elmiron. It has been helping pretty well. The past few days Ive had a bad flare. I try not to take advil/ibuprofen. Any others out there with IC that have symptom relief tips? Im staying away from the 4 Cs, and other irritants in food, drink. (The 4 Cs being caffeine, carbonated, citrus, vit. C.)

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thejae1 | @thejae1 | Oct 31, 2021

In reply to @douglsrson "How many pills were you supposed to take per day?" + (show)

I think 3.

thejae1 | @thejae1 | Oct 31, 2021

In reply to @csage1010 "Just curious if you do not have pain, how did you get diagnosed?" + (show)

Also had several UTI’s over the years.

ToniM! | @douglsrson | Oct 31, 2021

In reply to @thejae1 "I think 3." + (show)

Thanks for responding.. I really can't afford that at all!

csage1010 (Sue) | @csage1010 | Oct 31, 2021

In reply to @thejae1 "Also had several UTI’s over the years." + (show)

But how were you diagnosed? Cystoscopy?

codered032 | @codered032 | Nov 2, 2021

In reply to @thejae1 "It was $483 with my insurance for 90 pills. I didn’t get it." + (show)

Hi hope you don’t mind me jumping in. Have tried pricing your prescription @GoodRx. I was able to find my meds cheaper than my Medicare inc

ToniM! | @douglsrson | Nov 3, 2021

In reply to @codered032 "Hi hope you don’t mind me jumping in. Have tried pricing your prescription @GoodRx. I was..." + (show)

Please jump in all you want. I'm desperate!!
By the way I am a female. I accidentally used my husband's login.
Thanks!!!

poppy67 | @poppy67 | Feb 11, 2023

In reply to @thejae1 "With a cystoscope used with water. It showed areas in the bladder wall that had openings..." + (show)

This is exactly how I was diagnosed but I do have pain. It was so horrible when I was first diagnosed that I had to retire from teaching.

diane | @dks | Feb 14, 2023

I'm so sorry you're dealing with the flare. I've found a microwave heating pad works well if tucked between the legs & laying on the bladder area. You might also try D-Mannose. It is over-the-counter. It has helped me. Best to you!

mmorley | @mmorley | Feb 11 5:48pm

I've had IC since the late 1980's when it frequently took several years to be diagnosed (1994 for me, which delayed treatment). Elmiron can be very helpful for those of you more newly diagnosed, (not as much for those of us who've had it so long). I don't want to sound negative because it is found more quickly now, treatment can be started earlier, and more is known about it. I had to go on medical disability because of the pain in 2006. I tried all the available treatments, at that time, which included DMSO and other bladder instillations, some now-outdated methods (including Silver Nitrate via catheter- barbaric), numerous other therapies, and then, Methadone for 14 yrs. (which seemed to help me the most). We're not all the same so, experiment with diet, baking soda dissolved in water, Tums, (both to decrease acidity), a warm compress, acupuncture, meds, Aloe Vera, hydro-distentions, and anything else your Dr. recommends. I strongly encourage anyone with chronic bladder pain to see one of the top 10 Drs. who specialize in IC in the country, and to join the ICA for resources and supportive help. After age 70, I was told the pain usually decreased and I have, thankfully, found this to be the case. God bless and never give up hope.