Thread: Elmiron...how long?
02-12-2008, 12:51 PM #1
I was dx last summer with IC and have been on 2 capsules twice a day of Elmiron ever since. I saw my uro last week and they are still telling me to continue with the same amount. According to the uro, I will have to take Elmiron for the rest of my life or risk going back to the way I was when dx. I am not longer in pain and only have some frequency, mostly at night. I don't know exactly how often a "normal" person goes to the bathroom, but I still go 7 or so times per day and at least once during the night. However, I am an older woman past 40 and think this may be normal for me. I'm concerned about being on the Elmiron for the rest of my life. I blame it for my thinning hair. My hair was sort of this before, but now it is very thin on top and this has me greatly worried. I'm thinking of cutting my dosage down myself just to see how I feel. I sure don't want to go back to pain etc., but don't know how to handle this. Anyone else in this position?
02-12-2008, 01:21 PM #2
I am glad that the Elmiron is working for you. You could ask your Dr if you could cut the the does down to one just for maintenence and maybe your hair would stop thinning. I know a few that have done this.Hugs
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
Diet Reference Sheet:
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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