Tweet
Has anyone else experienced a spike in symptoms when using Elmiron? I am having crazy frequency and some pain right now, and was doing well for awhile. I have been pretty good with the diet and have been managing stress alright, but could also be allergies I guess. Whatever it is, I feel like my ic is getting worse and it REALLY freaks me out.
-
-
How long have you been taking elmiron?
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool -
muddled
After 4 months on Elmiron I was in a good phase, not clear if from elmiron or not (because I can have little streaks of that) and then I switched to pentosan sulphate sodium (what Elmiron is made of) from another company in Australia and I had a series of flares. I quit that out of desperation, took prosed and improved back to where I was before so it is all so unclear. I really don't think it was the generic Elmiron that caused these flare but I had to stop to see. I may start up again in awhile. I lost 6 or 7 months doing this. I also tried hydroxzine, but that did not help.
I think you got to give it the time it normally takes you to get through a flare at least to see if it is just that or as you say allergies.I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.Comment
-
I got steadily worse on Elmiron. I didn't want to believe it was causing it, but once I stopped it, I got better. I took it for 2 months, it took about 3 weeks after stopping it to get back to my previous level of IC symptoms. I called the company that makes Elmiron and the nurse there told me that there is a small subset of sulpha-allergic patients who have trouble with Elmiron. Since I'm also allergic to sulpha, I figure that answers why it happened to me. It doesn't happen with everyone who's allergic to sulpha, just some. Please, anyone, don't send me private messages about this - this is all I know.Kadi
-------------------------------------------------------------
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
------------------------------------------------------
New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
"
Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!
Comment
-
Thanks you all. Donna, I have been on Elimiron for only a few days. I tried it few months ago and stopped because I though it might be making me worse. But then again, I have bad days without it as well. I'm just noticing this strange sensation in my bladder while on it but it could be something else causing it. All I know is that I seem to be getting worse right now Elmiron or no Elmiron and it is really scaring me.Comment
-
I have been on elmiron for 2 weeks and my urgency has gone from a 2 to an 8! Its driving me crazy. Im going back to my urologist in a week and a half with my concernsOriginally posted by jawein02 View PostComment
Comment