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  • To Soon for Prelief?

    I am recently diagnosed with IC and have only been on Elmiron for a few weeks. I constantly have burning feeling and am wondering if I am causing problems if I try to eat a food that is not bladder friendly but taking Prelief. Should I wait until I get relief from the burning before I give in to the need for a non-bladder friendly food?

  • #2
    I use Prelief, but I still have to avoid my trigger foods. The Prelief doesn't give us total freedom to eat everything, but is great for those occasions when I eat away from home and can't be positive that everything on the menu is IC safe.

    Donna
    Stay 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

    Comment


    • #3
      I found that prelief worked pretty well but not always 100%, especially with coffee. At first I was trying to still have some of the offending drinks and foods by taking prelief with them, but later found it was better to just stop the offending stuff altogether until my bladder calmed down. Trying to get my bladder to calm down while still eating and drinking irritating things just didn't work. After my bladder calmed down for a good while I tried certain things now and then and used the prelief.

      Comment


      • #4
        If you are diet sensitive, you may as well go ahead and change your eating style to match that of the food we're allowed to eat. I've been on the diet for almost a couple years now and it really works well in combo with the medications. Remember, you can still have flares even with all the medications they give you, so I'd avoid the 'no' list altogether.
        Your Friend,
        Michelle

        Diagnosed: 10/16/09

        Elmiron, 100mg 2x per day
        Imipramine, 10 mg per day
        Diazepam 10 mg for sleep
        Zyrtec
        Zovia, birth control (ongoing-no periods)
        Probiotics
        Hydrocodone, 2 pills a day (at any time of day)

        Comment


        • #5
          Trigger Foods

          Thank you for the information. Unfortunately I don't know what any trigger foods are for me. I guess I have to wait until my bladder heals to find out. I have the same burning sensation no matter what I eat. I have eliminated all non-bladder friendly foods from my diet but I feel like I am living on bread and water.

          Comment


          • #6
            You could talk to your dr. about adding another treatment to the Elmiron. Elmiron can take several months to work & (per my urologist), only works in 30% of patients. There are many treatments described on this website that may help your burning sensation. Antihistamines & tricyclic antidepressants, bladder instills, bladder analgesics (pyridum, prosed). And remember if you eat or drink a non-friendly IC food or beverage, it can take days for the bladder to settle down again. I stayed very strict for over a year before trying to add things back. Feel better soon!

            Comment


            • #7
              Doctor

              Thank you, I have called my doctor's office several times but cannot get past the nurse telling me I have to give the Elmiron 6 months. I go back in July to see the urologist so hopefully I can get some relief. I have been following a strict diet and feel like I can't eat anything at all.

              Comment


              • #8
                I hope your appointment is in early July --- if not you might want to call to see if you can get in sooner. I know elmiron can take six months or more to help, but most doctors will order medications to help get through that six months.

                Warm hugs,
                Donna
                Stay 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

                Comment


                • #9
                  I always suggest that people stick to the Bladder Friendly list when they are first taking Elmiron. You wouldn't scrape sand paper on a wound three times a day if you are trying to get it to heal. Why take a chance and slow down the effectiveness of the Elmiron?
                  Julie Beyer, MA, RDN
                  IC Dietitian, Patient Advocate, Speaker, & Author


                  Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                  Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                  You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                  ........ ........


                  Other IC Diet Resources:

                  IC Diet Webinar
                  IC Diet Website
                  For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                  Free IC Diet Booklet: What Can I Eat?
                  Confident Choices IC Diet Blog
                  IC Diet Newsletter


                  *Let's Connect!*

                  Comment


                  • #10
                    Can't Figure it Out

                    I have been following the diet guidelines and am still having burning no matter what I eat. Since April I have had only 1 day where I felt like a normal human being again. At this point, the burning has become a way of life for me. My diet right now consists of white bread, Kraft american cheese, canned pears in pear juice, cereal, plain oatmeal with blueberries added, skim milk, water, pear juice, canned green beans, unseasoned chicken or pork chops, Ritz crackers, and occasional Bryers Vanilla ice cream, and vanilla pudding (sometimes sugar free though).

                    I have been drinking Gerber's Pear Juice and not sure if that is a trigger. It contains absorbic acid (Vitamin C). But as a diabetic on an insulin pump have been having trouble with low blood sugars due to new diet and since Elmiron needs to be taken on empty stomach I am trying to avoid eating while taking the medicine and have been drinking the juice as a quick fix. I am also taking Urelle 3 x a day. I go to my Urologist today and am going to ask for alternate treatments and maybe a Nutritionist who can help me.

                    Comment


                    • #11
                      One other possibility

                      Hey it sounds like you are doing all you can do to try and heal your bladder. I know how terrible it is to be on such a strict diet. I do think that it wouldn't hurt to check the ascorbic acid possibility. Another thing, and I hate to mention it, but I try to stay away from all preservatives. So with the Ritz crackers, american cheese, ice cream, cereal and anything else try to read the ingredients. I don't know, but it's just a small suggestion. I buy white cheese (cheese that is orange colored often has coloring in it), all natural ice cream, Kashi or Full Circle cereals with no preservatives.
                      I don't know what kind of time you have, but you might try to make some homemade bisquits to add some variety and make sure you aren't getting any additives.
                      I end up making alot of my own things. It is more time consuming, but at least I can make sure nothing is added.
                      I don't know if you like scrambled eggs, but many say that they are easy on the bladder for them.
                      Hang in there and I know it's irritating when you are being so good and you still have pain. It's a bit of a guessing game to start with.

                      Comment


                      • #12
                        Thank you, I just met with my urologist today and she says that I need more time to heal. She is prescribing an antihistimine to try. I am also going to look into physical therapy. I work full time and have an 1 hour commute each way so preparing my own foods is a little too much for me. I also have a 7 yr. old boy who takes up a lot of time as well. I will have to make an effort to get to a Whole Foods store to see what I can find there.

                        Thank you again.

                        Comment


                        • #13
                          Just to give you some (hopefully not false!) hope, my antihistamine is my #1 go-to med for IC. I could do without Elmiron pretty easily I think, but no one better DARE take away my hydroxyzine!

                          I was on a pretty strict diet eating only out of the Usually Okay column of the list for about 6 months before I tried expanding, however. Giving your bladder time to heal is a good thing. I can now eat mayonnaise and drink a few glasses of wine if I take Prelief. (Among other things... these are the two I am most excited about!)
                          Symtoms started July 2010.
                          Severe pelvic floor pain only.

                          2 time PT graduate!
                          In medical remission since August 2011; able to eat and drink anything I want currently.

                          IC meds:
                          200 mg Elmiron in the morning
                          100 mg Elmiron @ night
                          Macrobid after intercourse

                          03/11 07/11 01/12
                          If at first you don't succeed: 07/26/2013!

                          Comment


                          • #14
                            I hear you when you say your time is limited.

                            Ready made foods are often problems if you are, as I am sensative to preservatives, as someone else mentioned.

                            Something you could try is to spend a day off, get your son to help you if he is so inclined, make meals ahead of time with safe ingredience. Or when you make a meal make double what you need and freeze the extra 1/2 for later use.

                            I will make big batches of home made soup, or mac and cheese with a cheese I can eat, even precook a bunch of chicken a way you like it, or mashed potatoes pretty much any thing you can think of, or even buy some safe foods in lg quanty etc.

                            I then bought a food saver well worth the expense, use it to vacume seal meals, or portions big enough for my family, or single serving size, what ever I need.

                            I put them in the freezer and then take them out in the am or when I want to eat them, I then put them in a pot of boiling water to reheat, this does not dry the food out reheating it.

                            It means I always have an easy to prepare meal accessable and while it is boiling you can spend the time with you sone.

                            I use the foodsaver to vacumme seal, rather than zip locks or things like that, because they do not leak when you are reheating it.

                            You can reheat in the microwave too, but this may cook the food more rather than reheating.

                            In the long run it saves time and energy. You can also use a slow cooker, just throw a whole chicken or what ever meat you want and maybe onion with it, turn it on and come home to a cook meal. You can also put the meat in froozen.

                            I have other idea's too but no time to write right now.


                            This diet sounds like a lot of work but once you get the hang of it it is worth it.

                            MG
                            My are with you all. May you all find a way to peace and joy in your lives.

                            Comment


                            • #15
                              Hydroxyzine

                              Thank you, I hope it will work for me. She started me on 25 mg 1x a day at night - is that close to what your doctor prescribed for you? How long before you felt any relief?

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