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I was curious as to what is considered an actual remission? Is it considered to be a certain amount of time with absence of symptoms? My symptoms which included pain, burning, and irritation have completely disappeared and I've stopped any meds I was taking except the Quercitin and I am still asymptomatic. I know IC/PBS symptoms can come and go, but is there a length of time of being without symptoms that you can start to celebrate, or does it all vary from person to person?
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YAY!!!!!!!!!!!!!!! I am soo happy for you!! What meds were you on!?
I think it depends on the person, I know many have had really long remissions and some have periodic remissions that come and go but are not for that long...I would say celebrate everyday you feel good
Good luck!!!!!!28 yrs old,
I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again
I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC. 
What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!
Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!
Me in my graduation gown!
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I was taking Benadryl daily and about 5mg of Surmontyl at night. I added vaginal estriol cream and also Quercitin 2x a day. I eliminated all coffee, red wine, and black tea. I also did my pelvic stretches daily. I noticed a big difference when I added the Quercitin so I don't think I will stop this for now but haven't needed the other two meds at all. I only get up once at night now to visit the bathroom. It still puzzles me how this condition can cause so much pain and then completely disappear. How can something that painful just 'go away?' I guess I will just celebrate the current no pain days and hope for the best.Comment
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Congratulations!
Congratulations!!!! What wonderful news!!! I hope your remission is here to stay. Perhaps with the diet change and supplement it will. Hooray!Comment
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Thank you. I think the diet change took a while to have an effect on my bladder irritation. I was expecting immediate results, but apparently it can take quite a while for the bladder to calm down.Comment
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Congrats to you! Can you tell us the brand of Quercertin you take and how long from when you were diagnosed until now? THANK YOU!Hugs to my IC pals!
-Michelle
Wife and mom of 2 kiddos (11 & 13). I am 51 years old
Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
Elmiron instills gave me 2 full months of total remission until January of 2011
Started Elmiron on 10/22/2010 (200mg twice per day)
Started Elavil 20 mg. in 2/2011 - 8-2012
Started 25 mg. Hydroxyzine in July 2011 - 10-2012
Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
Tums with any possible caution foods, now I take nothing but Hyophen if needed
Started running in February of 2011, yoga in 2012 to current
Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
No longer using any supplements
Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!Comment
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I'm taking Solaray non citrus Quercitin 500mg. I started out with twice a day and now sometimes only once a day. I also took Hyaluronic acid capsules but didn't notice a big improvement with that until I started the Quercitin. My symptoms started last July on and off, but I wasn't diagnosed until March of this year.Comment
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Thanks!
Thank you! I've ordered both, please wish me luck!!Hugs to my IC pals!
-Michelle
Wife and mom of 2 kiddos (11 & 13). I am 51 years old
Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
Elmiron instills gave me 2 full months of total remission until January of 2011
Started Elmiron on 10/22/2010 (200mg twice per day)
Started Elavil 20 mg. in 2/2011 - 8-2012
Started 25 mg. Hydroxyzine in July 2011 - 10-2012
Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
Tums with any possible caution foods, now I take nothing but Hyophen if needed
Started running in February of 2011, yoga in 2012 to current
Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
No longer using any supplements
Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!Comment
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I do wish you luck. There are so many things out there to try for this condition. I still use the prelief when I eat out just in case.Comment
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I am now taking querciten too! (well I will after I stop flaring) lol Ill also be taking colostrum.. see if that improves any... How did the quercitan help you.. did it get rid of some of the symptoms
Jenn28 yrs old,
I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.
What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!
Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!
Me in my graduation gown!
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I do feel it helped my symptoms because I saw a big improvement after I had been using it for a couple weeks. The pain level decreased, and so did the frequency.Comment
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Earthlady, what are the pelvic stretches and how did you learn how to do them? Thanks!IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...
Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pHComment
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My pt gave me the stretches to do during my pelvic floor therapy. The other ones I got from the book Heal Pelvic Pain by Amy Stein, MPT. They were all similar to the ones my pt gave to do.Comment
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Quercertin: A miracle?
I've been taking this supplement, as well as Chlorella and Spirulina and have felt pretty darn good lately.
I'm so happy for all of you and continue to pray that we remain feeling good! Those who aren't there yet--keep researching, keep trying. !!!Maria
Current medication: Soul-searching
Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.
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Hi Maria
Thanks fantastic that you are doing so well! I was just wondering if you were ever on any meds? If so, do you feel that any were beneficial?
Thanks!
SuziComment
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