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Just Daignosed have a question about meds

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  • Just Daignosed have a question about meds

    hello I am a mother of two and a wife trying to understand where this fits in my life.I was just recently diagnosed with IC about a month ago and given Elmitron and VESIcare to take.due to my fears and denial I have not started taking them yet.Well of course my pain has gotten worse and I am now so frustrated.I just recently started to look into understanding IC and learning how to live with it. Well today is day one and as I read I see their is a book on the diet and also many other books. Can anyone recommend a book to start with ? And does anyone have info on the meds, so maybe i can lower my anxiety about this whole thing. Thank You Catherine

  • #2
    hello there!

    and I hope you find all the answers to your questions, here on this wonderful site! There is soo, much info and research to look at, in just the postings, and articles, and research on this site alone! So I have not myself gotten a book yet, though I am sure they are all wonderful! I wish I could recommend one, but I can't. Though soon I will! There is so much helpful advice that I am sure there will not be a question unanswered! People generally seem to have great results with the Elmiron in time. It is worth starting. The Vesicare, I hope it goes well with you. Anti-frequency meds(though terribly needed) Create more side effects for me, than they do good. So I wish you better luck with that one!! I wish you all the best!!
    Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

    Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

    Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.


    • #3
      Hi- I take both of these medications. I have been taking Elmiron since it came out (1997) I haven't had any of the side effects that other people have mentioned here on the boards (of course, were all different!- It helps me alot. I do have my flares--(pain, freq/urgency,etc) but it can be worse).

      As to Vesicare, I just started taking that myself, and tell you what, it has really helped with the frequency! I use to get up 6-7 times a night (I work full time and this just didn't fly - I mean, no sleep and after about 2-3 nights in a row I just couldn't function at work). My family doctor put me on this about a month ago and within a week if that I felt so much better! Sure I still get up, but its like 1-2 times a night, and then I usually go back to sleep.

      As to other information, you can research other postings go to the book stores (I went to the bookstore the other day, and I found a couple of books IC-- didn't buy them though) you can even buy them here I think at the ICN shop. Other people will come in and give some suggestions later on.


      • #4
        Hi Catherineallen,
        I was diagnosed with IC in Sept. and have been taking Elmiron since then. Elmiron is supposed to help rebuild the bladder lining. I'm not taking Vesicare, so I don't have any info on that. Maybe someone else here will respond regarding that.
        I've purchased a few of the books, I would say the best one to start with, in my opinion, is The Interstitial Cystitis Survival Guide.
        If you click on the Site Map link, there is a link called IC Patient Hand Book,which is very helpful, also is very informative.
        Work like you don't need money,

        Love like you've never been hurt,

        and dance like no one is watching


        • #5
          I am also a 32 year old mother of two, wife etc...and IC doesn't fit into my life, LOL. I was officially diagnosed on March 1st, but had been dealing with IC since Nov 2006.
          I take Elmiron and haven't had any side effects. I take a bunch of meds and feel sooooooooo much better since I started. I also do twice a week rescue instillations. I don't know what has worked the best since they were all started together but I have noticed significant improvement in only 5 weeks!!

          If you are going to heal and get better you can't be in denial about it anymore. These boards are SO helpful.

          The best advice I can offer you is to journal what you eat, your stress level and how you feel. I did the elimination diet. Turns out, food isn't what causes me pain, its stress and hormones depending on time of month. I still don't drink caffeine, carbonation, coffee or eat tomatoes but other than that I've added everything back. IC is unique to each individual. You have to learn about your own IC and how you can manage it best. The meds are good. Doesn't mean you have to be on it f-o-r-e-v-e-r, but you may need it NOW to get back to feeling "normal."


          • #6
            I was diagnosed a year ago. Im a very active person, and I just couldnt grasp how this was going to fit into my life.

            First thing to do, is to educate yourself.
            Second, get a good support system around you. You will need it.
            Third, try the diet. Its not as bad as it looks. My IC is very mild, and I only have a handful of things that I cant have. Just start from the bottom and work your way up. Once you learn what hurts you, you wont want it anymore. Drink lots of water also!

            I know you are feeling overwhelmed, but thats what we are here for. Just holler if you need anything.
            Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

            I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

            Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

            I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!


            • #7
              One of the most comprehensive books about IC and its treatment is The Interstitial Cystitis Guide, by Dr. Robert Moldwin. And as others have said, the ICN's free online patient handbook is a wonderful resource as well:


              Diagnosed August 2001

              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy