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Hello well I just wanted to be a ray of hope for everyone. I finally was successful in decreasing my elmiron I created a schedule that is one way one week and another way the second week and on and on. Week one: Mon-2 pills am 1 pill pm Tues- 2 pills Wed- 1 1/2 pills am 1 pill pm Thurs 2 pills am Friday 1 1/2 pills am then 1 pill pm Saturday 2 pills then Sun 1 1/2 pills am and 1 pill pm. (Total 16 1/2 pills week 1) Then week 2: Mon 2 pills am 1 pill pm Tues 1 1/2 pills am 1 pill pm Wed 2 pills am Thur 2 pills am then 1 pill pm Fri 2 pills am Sat 1 1/2 am then 1 pill pm Sun 2 pills am. (total pills week 2 17 pills) Well I used to take 4 pills a day then 3 pills a day and now 2 to 2 1/2 pilss aday! Yay Progress thank you Lord! I had to change my diet more due to less medication I cant go crazy with foods I have to stay with in means of safe foods but I can say that I can enjoy chocolate candies, peach tea sumtimes, some cayene pepper (alittle) for taste I have been able to eat some condiments like ketchup, mustard, ranch dressing mayo I have to be careful still. I eat alot of salmon and tuna for omega for my bladder and I drink Fiji big waters to flush everything out that I eat. The ph on it is 7.8. I take up to 9 tums a day and up to 10 preliefs aday with lots of water to flush out. Little by little I am getting there it is just taking awhile I have been on elmiron since nov 2009.
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Reply:
That's wonderful to hear! Elmiron can really take a toll on the body, so the less you take to manage IC, the better.
I too love peach tea! And I think as long as you "flush it out" with water (this goes for any food) the effect on your bladder will be minimal. For example: my boyfriend made spicy chimi-changas that I couldn't resist, and I drank a lot of water with it and had no flares. Water and moderation is key!
Good luck and congratulations!
MollyDiagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!
Medical research addict.
Likes: hot baths and naps with cats
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off Elmiron finally
I am finally off Elmiron after two years. It helped my healing begin. I was diagnosed in 2008 and am finally drug free. It was a long process but worth it. I want to offer hope to everyone dealing with IC. I know different people respond to different treatments. Food Allergy testing, meditation, whole foods, and counseling helped me to recover. I pray for healing for everyone! Don't let anyone tell you that remission is not possible. It is!Comment
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So do you take the prelief and tums even though you are on the IC diet? I've always been confused about that. I thought I should only take them when I'm eating something I know is acidic, and so I don't take them at all because for 9 months I've been strictly on the diet, though it hasn't helped much. Also, and I don't mean to pry or be indelicate, but I had bowel issues when I took 2-4 prelief a day. It backed things up! How can you take so many?! :-P Really glad to hear you're doing so well though!!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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bmcrae good news, so happy for you. How long have you been off of Elmiron? How did you do it? I'm afraid to stop as the begining of my trip into IC was so rotten painful and fearful I never felt I could be normal or close to it again. Elmiron, the diet, and some HYDROS have taken me away from hell but now I experience many side effects. Total exhaustion being the worse. Thanks for your post. It gives us all hope. Hug, ZiggyComment
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Congratulations on your progress! I'm just wondering, how long did it take for Elmiron to start working for you? I've been taking it for 5 months with no response so far.Originally posted by nevergiveup View PostDIAGNOSES:
* Interstitial cystitis - developed this immediately after hysterectomy on 21/09/2010
I do not have flares. I have been in horrible pain 24/7 since I developed IC.
* Vulvar Vestibulitis - came along with the IC
* Depression
* Chiari 1 Malformation
Nothing has helped yet..
PAST MEDS/SUPPS:
* Tramadol - stopped working for pain
* Morphine - had to stop because of extreme constipation, unresponsive to laxatives.
* MSM - 2 months
* Glucosamine - 2 months
* Endep (Elavil) - stopped due to extreme fatigue/urge to sleep 24/7
* Periactin - 1 month - similar to Hydroxyzine, which is not available in Australia (the pharmacist told me).
* Nizoral - 2 months
* Nilstat - 2 months
* Aloe Vera Juice 98.9% pure inner gel - 1 month
* Chinese herbs & accupuncture - 3 months
* Bladder Q - 3 months
* IC diet
* Juice fast
* Alkaline diet
* Alkalising supplements & drops
* Barleygrass, wheatgrass,
* Prebiotic & probiotic supplements
* fish oil
* evening primrose oil
* D-Mannose - 1.5 months
...and more I can't remember.
CURRENT MEDS/SUPPS:
* OxycontinSR 20mg 3xdaily - since Jan 2011
* Osmolax - laxative - 6 scoops per day
* Amitriptiline - tricyclic antidepressant, has reduced 50% of Vulvar Vestibulitis pain. IC pain-no response. I want to come off this because I have gained 5kg (12 pounds) and counting
* Elmiron 400mgxdaily - since 27th May 2011 - It's not working
* colostrum - 9 pills per day since August 2011
* spirulina
* marshmallow root
* comfrey
* cat's claw
* slippery elm
...you can't say I haven't tried.
SOON TO BE TRYING:
* Bladder instills: heparin, lidocaine, sodium bicarbonate. (I'm scared)
* Cyclosporine (maybe)Comment
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Wonderful news to hear!Originally posted by bmcrae View Post
I am curious, could you please tell me how long it took for Elmiron to start working for you? I have been taking it for 5 months so far, with no response.DIAGNOSES:
* Interstitial cystitis - developed this immediately after hysterectomy on 21/09/2010
I do not have flares. I have been in horrible pain 24/7 since I developed IC.
* Vulvar Vestibulitis - came along with the IC
* Depression
* Chiari 1 Malformation
Nothing has helped yet..
PAST MEDS/SUPPS:
* Tramadol - stopped working for pain
* Morphine - had to stop because of extreme constipation, unresponsive to laxatives.
* MSM - 2 months
* Glucosamine - 2 months
* Endep (Elavil) - stopped due to extreme fatigue/urge to sleep 24/7
* Periactin - 1 month - similar to Hydroxyzine, which is not available in Australia (the pharmacist told me).
* Nizoral - 2 months
* Nilstat - 2 months
* Aloe Vera Juice 98.9% pure inner gel - 1 month
* Chinese herbs & accupuncture - 3 months
* Bladder Q - 3 months
* IC diet
* Juice fast
* Alkaline diet
* Alkalising supplements & drops
* Barleygrass, wheatgrass,
* Prebiotic & probiotic supplements
* fish oil
* evening primrose oil
* D-Mannose - 1.5 months
...and more I can't remember.
CURRENT MEDS/SUPPS:
* OxycontinSR 20mg 3xdaily - since Jan 2011
* Osmolax - laxative - 6 scoops per day
* Amitriptiline - tricyclic antidepressant, has reduced 50% of Vulvar Vestibulitis pain. IC pain-no response. I want to come off this because I have gained 5kg (12 pounds) and counting
* Elmiron 400mgxdaily - since 27th May 2011 - It's not working
* colostrum - 9 pills per day since August 2011
* spirulina
* marshmallow root
* comfrey
* cat's claw
* slippery elm
...you can't say I haven't tried.
SOON TO BE TRYING:
* Bladder instills: heparin, lidocaine, sodium bicarbonate. (I'm scared)
* Cyclosporine (maybe)Comment
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