I just had a doctors apt with my doctor last week for my ic and he gave me another script for elmiron. But told me that he doesn't think that people stay on this med. For the rest of their lives. I really can't handle my life being turned upside down again and my finances definitely can't take another hit like it had a year ago.trying to figure out what was happening with me. So I'm just curious, if anyone has stayed on this medicine for longer than a year and I mean taking it everyday, not on a as needed basis. Any comments/suggestions are much appreciated!! Thank you
First, so sorry to hear you have IC and are having problems with medication (and all the financial woes attached)!.
I first replied to this and for some reason my reply didn't go through. It was too long anyway.
Long story short, I've had IC since age 15 and I am currently 30 years old (female). I was misdiagnosed for YEARS--like 10 years. When I was finally diagnosed, I was given the holy cocktail (of crap): Elmiron, Tricyclics and an anti-histamine. Suffice to say, it was awful. I felt like crap, had an allergic reaction to both the antihistamine and the tricyclic.
I stayed on the Elmiron for 8 months. While in college, I decided to do some research on Elmiron. Found out the following:
1.) Doctors want us to be on it for at least 18-24 months before they can determine if it's working.
2.) It's a Coagulant, which means it thickens your blood and all of your mucous in your body.
3.) Here's the kicker-- only 6% of it passes through your bladder! This is why it takes almost 2 years to know if it's actually rebuilding your bladder lining. The remaining 94% goes through your GI track and other parts of your body.
Elmiron was awful. I had horrible headaches, digestive problems, I felt gross! And I was losing some hair too, because it also can cause alopoecia (temporary hair-loss while taking the med).
Two years ago, I was diagnosed with Celiac disease. I was in kidney failure and I thought it was because of IC. It was actually becuase of Celiac!!
I elminated gluten from my life and VOILA! My IC flares disappeared, my kidney functioning restored, and I feel AMAZING! No more fatigue, no more burning pee and urinary pain, bladder pain, kidney pain. My brain is working like it never has before, and my joint pain and muscle aches have also disappeared.
Obviously, I am not sure if you have Celiac, but gluten does affect IC flares-- just like ALL of our diet choices. I stay away from refined foods in general, espcially sodium!
Also, i exercise every day and drink 3/4 of a gallon of water. I used to drink a whole gallon but my urologist yelled at me! haha.
Also, with IC, stay away from liquid potassium---it can affect your kidneys and your bladder. I went blind temporarily from Smart Water when it first came out. That's how I was finally diagnosed!
Sorry this is rushed, I am happy to answer any other questions.
Try eliminating gluten and see what happens.
Personally, no medication can cure an autoimmune disease, which is what IC and Celiac are.
Have you had your thyroid checked as well?
I hope you find your path in all of this!!!
As far as going gluten free, it's definitely a lifestyle. Even if you do not have celiac, as I said before, eliminating gluten does seem to benefit most people with IC/Flares.
To start, I would do 1 or 2 weeks with absolutely NO gluten. Just to see if you start feeling better. I am sure that I am bias in saying this, but this is not just about gluten, this is about how our country is eating a ****-ton of refined and processed foods, and we are likely to have reactions to not just gluten, but to all the other dyes and crap they put in our foods.
So, eat fresh meats, vegetables, fruits and eliminate sodas as well (gluten hides in sodas). I try to follow a Paleo Lifestyle, but that is super strict and even I don't always follow-through on it...
Things to be mindful of:
1) Eating at restaurants is a sure way to get "glutened". Gluten is often used in sauces, marinades, dressings, broth (chicken, beef, etc). So when eating out, unless you are 100% positive there is no gluten, gluten has a way of sneaking into most things that end up on your plate. Gluten is often used in preservatives as well. So eating lunch meat that is cured or says "honey ham", will have gluten in it.
2.) Gluten is: a protein and binder found in Wheat, Barley and Rye. Oats are naturally gluten free, but often processed with wheat, so if you like Oatmeal, you can get Gluten Free Oats in a nice big bag from a health food store.
3.) The obvious gluten foods to avoid: wheat pasta, bread of all kind, unless it specifically says "gluten free", pizza, hamburger buns, hot dog buns, soy sauce, crackers, cookies, do-nuts etc.
4.) The not so obvious foods that HIDE gluten in their products: Soy Sauce, Salad Dressings, Marinades, Ham, Other cured/Lunch Meats, Coca-Cola, because of the "caramel coloring" (There's debate that Pepsi does not have gluten but I am not so sure), MSG and steak-tenderizer, Doritos and other chips that often use a powder that has gluten in it and nuts (because they are often processed in the same facility as wheat and somehow, I've always gotten a reaction from any nut/cashews etc, that are processed in the same facility), and CHOCOLATE--- make sure you get a chocolate that is not processed in the same facility as wheat. Also, french-fries from most restaurants, tend to have wheat/ flour on them to make them more crispy. I still eat french-fries from In-N-Out here in California if I am craving it. Also, when eating out, you will probably NEVER eat chinese food again unless you make it at home. Most if not ALL chinese/asian foods have sauces that are all gluten filled. I am sorry to break that to you if you love Chinese food. You can still eat most sushi and there is gluten free soy sauce, but Chinese Restaurants just don't work for G-Free people. Also, the sodium gives me IC flares too.
5.) Things gluten-free folks can eat: Corn-tortillas, Rice/brown rice (Sometimes rice is stored in the same transport tank as wheat. I just learned this, so maybe check to see if it says "gluten free" but otherwise, rinse your rice always). Quinoa (an ancient Incan Grain that tastes great cold and hot), Potatoes, sweet potatoes, all vegetables, all fruits, all fresh meats, ice-cream (as long as it does not have any cookie dough or cookies-- just look on the labels and check for anything that may look like gluten/wheat), and you can still have cheese. There is debate about aged/blue cheese, but I make sure if I do eat blue-cheese, that it says it's gluten free. If cheese is a big part of your life, definitely do research about it.
6.)Typically, I eat things that are fresh and healthy for me anyway. However there are Gluten Free products that are great if you are having withdrawals from all that stuff that is full of wheat:
Gluten Free Products: Gluten Free Soy Sauce-- It has to say, Tamari/Gluten Free-- it tastes better than regular soy sauce anyway. There are tons of Gluten Free Breads--- Udi's is popular, but I think it's incredibly constipating and could make you choke from how dry it is. When I want something like a Tuna Sandwich or PB&J, I eat this Gluten Free bread called "Canyon House Bakery". It's amazing. You can go to their website or go to whole foods. It is soft and tastes like any wheat bread. They also make Hamburger Buns that actually taste like real buns!! Soft and everything.
You can also get gluten free cookies, donuts, crackers, etc. Things are typically more expensive, but Whole Foods and other health-food stores do carry a lot of Gluten Free Foods. Also, there are fantastic gluten free pastas made of Quinoa and/or rice/potato flours. I prefer Quinoa Pasta because they taste and cook the best. The Rice Pastas get mushy.
Ok, This was a lot of info. I am obviously into this haha. I hope this is a good start for you. I definitely recommend doing your own research, spending tons of time reading Gluten Free Websites, hints, tricks etc.
Also look at some Paleo Recipes too-- all gluten free and every recipe will be sure to make you feel great! Lots of yummy deserts you can make too..
Wow! And i thought the ic diet was strict. Lol but its worth it, if everything gets better! Can u tell me what kind of websites to start with? I tried googling things but that didnt really bring up anything that i wanted. So how long have u been eating gluten free foods? Does it usually take awhile for someone to fully see an improvement? If u cant answer that, its fine lol im just looking to see what to expect timeframe wise when i do try this. I know u said two weeks, but im assuming it varies person to person.I really dont cook so im usually struggling when it comes to these things lol
Hey never apologize for too much info LOL. I could sure use it! I have been diagnosed with IC and am currently on Elmiron. It's only been a few weeks since I started the meds so I need to be patient, as per my nutritionist, but overall it seems to be helping without any bad side effects and my symptoms have improved ''somewhat'' but it's not 100% yet for sure. The nutritionist I saw at the hospital gave me an IC diet to follow but I really am willing to try out this gluten free method to see if it will help with my IC. I haven't tried any supplements for my IC i.e. Cystoprotek, Bladder Q, etc, but my pharmacist did order a bottle of L-Arginine for me and I will try it, in combination with my medication, and see if it helps me more. My main symptom is pelvic pressure/pain in the lower abdomen and vaginal area. I hardly go a day without feeling ''something'' down there. One day I hope to wake up and not feel anything, and just be rid of the pressure and that need to ''go''.
Last edited by moderator2; 06-18-2013 at 08:09 AM.