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  • #31
    I just can't believe that there are not more posts about this medication. I still have my lovely period; I am 42 and don't know when menopause will creep into my life.
    bunnykinb

    6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

    tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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    • #32
      Cytotec works great for me!

      Hi Bunnykinb,

      I asked my urologist about taking Cytotec during my last visit in December of 2006. My uro is terrific, he is willing to talk about all new things that are being discovered with IC and he will pretty much let me try any medication out there. I had a problem with my insurance company one time and while I was sitting in his office, he called the insurance company and reamed them a new one. He said that "No patient of mine is goign to be in pain because of your idiotic rules! I am telling you, she needs this dosage and she must have it, do you understand????" They were scramblign to send me my meds then!

      He did have a problem when I requested the immunosuppresents, he said he is scared that I might develop cancer. And, I seem to be doing pretty well with the Cytotec (along with my laundry list of other drugs I take!) so I'd like to reserve the immunosuppresent in case someday my IC gets a lot worse.

      Anyhow! Once I had been taking the Cytotec for a couple of months, I noticed that I didn't have as much pain or frequency. Now, after almost 10 months on it, I feel very good. I am so thrilled that now I can even drink Diet sugar free Root Beer! YEE HA! After 4 years on water, milk and pear juice, it's so GREAT to be able to drink something different for a change!!!! Of course, through trial and error, I've found that I can't drink it when I first get up, I have to have my water and some food in my system before I can drink the root beer.

      I still can't eat tomatos (only my MOST favorite vegetable of all :^( ) or drink coffee, but I have noticed that I am able to eat a few more things than I could before.

      It's worked great for me, I'm on all kind of other drugs for this crappy disease but the addition of this one has definitely eased my symptoms. I used to get a flare at least 4 or 5 times a year but since I've been on this stuff (knock on wood!!!), I haven't had any. I can sit for 3 or 4 hours and not have to "go", sure has made riding in the car a lot easier.

      When I first started taking it, I had a lot of uterine cramping so I cut the pills in half until I got used to it. I now take 2 pills of 100 mg each in the morning and two at night. I now sleep through the night unless I haven't exercised that day.

      My uro has said that in his experince, people do better on a drug "cocktail" than one single medication. Sure has been the case for me.

      I currently take:

      Prevacid 30 mg (for GERD)
      Tricor 145 mg (for high triglycerides)
      Levoxyl 175 mg (slow thyroid)
      Elmiron, 100 mg 1 in the morning, two at night. (I also open the capsule and pour the powder in with the water that I take the other drugs with it, for some reason the capsule itself gave me a headache.
      Bentyl, 25 mg twice a day
      Vistaril, 50 mg at night
      Elavil, 10 mg at night
      Tramadol 25 mg one in the morning, one at night
      Cytotec 100 mg, 2 in the morning, two at night

      Once I got on the Cytotec, I tried to drop some of the other meds but had an immediate recurrence of pain. After 6 years of pain, I'll take all those drugs to be almost 100% pain free!

      I also take Calcium, Glucosamine Chond. and baking soda.

      I've found that when I have burning, I've either eaten something that is irritating my bladder or I haven't had enough water to drink. I take some baking soda and drink a lot of water and usually feel better.

      I made the mistake of riding bikes with my husband last Sunday, it's a pretty challenging trail course and my bladder was NOT happy with all the jarring. I had pain for two days but it seems to have disappeared today.

      So, if I were you, I definitely try Cytotec, it made a big difference to my IC. The improvement wasn't immediate but as time goes on, I feel much better than I ever did (before I got this crappy disease anyway). I only wish that we all had the same experiences with IC, then things that worked for one person would work for all of us.


      Sorry this post is so long, I tend to go on and on and on and... But, I'd encourage you to try all the different meds, you might find the "cocktail" that works great for you!!! SoTiredofIC

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      • #33
        I just started Cytotec again. I'm giving it another try. This time I'm taking it slowly, and will increase a little at a time. Hopefully this time I will see a positive result.

        I read that Cytotec can increase bicarbonate (a natural antacid in the system), and so somehow I feel that this is why it works for some people. For example I will drink sodium bicarbonate if I'm flaring and it helps to calm my bladder. I'm not entirely sure, but it made sense to me.

        Wish me luck!!!

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        • #34
          Cytotec Question

          Well I've been on Cytotec for two weeks now, and I'm up to two 100mg/day. What I would like to know is how gradual was your improvement because I am starting to have less frequency, and to feel better in general in the bladder dept. Was your remission all of a sudden or was it a little at a time? I'm fighting some sort of virus right now too, and am hoping that that is not the reason why my bladder is better. I tend to have less bladder pain when my body is busy fighting something else. I am not getting my hopes too high, but am hoping that it is the Cytotec taking effect.

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          • #35
            Hi Glassd18, how did you end up faring on the Cytotec? My improvement was very gradual and it was probably about 6-12 months before I went into complete remission. I would really like to find more research on Cytotec, there seems to be very little written about it online.
            current meds:
            cytotec 200mcg twice daily
            toprol
            allegra

            ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

            dx: hashimoto's thyroiditis 1998
            dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
            dx: endometriosis 2003
            dx: innapropriate sinus tacchicardia 2005

            meds tried but failed:
            elavil (6months)- severe tachycardia
            elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
            a bunch of others



            Me and my best friend's baby (also my Godson!)

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