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  • Cystotec/Seeking information.

    I am a male diagnosed with very severe IC. I have tried all consevative and aggressive therapies. (Interstim, Botox, etc.)
    Today, I started an oral dose of Cystotec (200mcc 4 times per day).
    Has anyone found this medication to be helpful with severe pain and spasms?
    I would greatly appreciate and would love to hear any comments/insights anyone might have concerning this medication.
    Many thanks, Paul

  • #2
    Hi Paul....

    I take Cytotec as well.....I feel it helps with my IC symptoms....I take 200mg twice a day(with bkfast and supper)......I am also on Elmiron.....

    Is it helping you at all??

    Bless, Sharon

    Comment


    • #3
      Cytotec

      Hello Sharon,

      Thanks so much for your reply.

      I just started Cytotec 2 days ago...No relief yet.

      Glad it is helping you!...Did it take awhile to build up in your system before you started to notice an affect?

      Thanks again,

      Paul

      Comment


      • #4
        Hi again Paul....

        I noticed the effects a couple days after taking the Cytotec......the feeling like I had to urinate all the time went away.....so it made a huge difference for me.......I still do have flares if I happen to eat the wrong thing, etc....but the flares usually do not last long.......... I just got over a week long flare(which I did mention on another thread), but now I feel pretty good...even was able to eat chocolate yesterday for Easter and Brushetta(I did take a couple Prelief for that one though).........

        My urologist suggested I stop taking Cytotec to see if the Elmiron is all I need to take(have been on Elmiron for a year now), but I am not ready to quit the Cytotec yet.....I just feel that both meds are making the difference for me....

        I really hope the Cytotec helps for you!!

        Bless, Sharon

        Comment


        • #5
          Cytotec

          I have had great success with Cytotec (and Elmiron) instilled directly into the bladder. If this sounds awful, the results have been great. I did not have to have my bladder removed as a result of the treatment. At first it was painful, but in a couple of weeks relief was present. The Dr. said that only a very tiny amount of Cytotec reaches the bladder when taken by mouth, but he still recommends that we take it. I hope you find relief quickly.

          Comment


          • #6
            Paul,

            I agree with streamside. My dr. said to do the same. But I didn't get relief. Dr. Rackley from the Cleveland Clinic is the one who had me instill it. He claimed only 3% reached the bladder taken orally. The side affects were horrilbe for me though. I would just be chilled to the bone in 90 degree weather and then my fibro would flare. I cause others had the same affect, but did get great results.

            Blessings
            MARY


            Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

            Comment


            • #7
              Paul,

              Cytotec was recently a HUGE success for me. Dr. Rackley is wonderful and so is his nurse practitioner, Maria. I do not currently use it. I use Lidocaine and Heparin now because we are trying to conceive and I am now on fertility drugs. Good Luck with it. You can email me at [email protected] if you have any questions. I was on it May-December of last year.
              Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

              Comment


              • #8
                I am sorry....February through December last year.
                Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                Comment


                • #9
                  Cytotec dose

                  "
                  Today, I started an oral dose of Cystotec (200mcc 4 times per day).
                  Has anyone found this medication to be helpful with severe pain and spasms?
                  I would greatly appreciate and would love to hear any comments/insights anyone might have concerning this medication.
                  Many thanks, Paul[/QUOTE]"

                  Paul,
                  Would you please clarify your dose for me and the name of the drug-- is it Cystotec or Cytotec? and is it 200 mg/4 cc instilled?

                  A lot of my symptoms are urethral burning which I know if I could find and afford the right PT would relieve the PFD. I'd also like to try external myofascial release and am eventually going to research that.

                  I'm very interested in the dose and method -- by mouth and/or via instillation?

                  Thanks and I hope you feel better soon. I know males can be more difficult to find a solution for and have more pain. Sorry you have IC and good luck.

                  Comment


                  • #10
                    cytotec

                    Hi, I read in one of these post where someone said something about a I C Magazine. I was not aware there is such a magazine. Where do you get it and do they come monthly or every three months.
                    Please let me know I want this for a lady who is in her late 70's and is in a assisted living complex, She does not know about computers and has no way of getting any information. Her main problem is the burning and going to the bathroom so often. Her doctor said there is nothing she can do, It seems like all the medication that he gave her she has a bad reaction to. She lives in Boston. I would get the magazine for her and have it mailed to her address.
                    Please help me help this lady, I only seen a picture of her and speak to her on the phone. The doctor wants to put a Interstim in, but first do the trial thing. I told her to try it and see if it helps. What works for one may not work for an another.
                    Thanks.
                    Sue041
                    Sue

                    Comment


                    • #11
                      Cytotec

                      Can this be done by injections along the spine??
                      The reason I am asking my pain Dr. wanted to give me some kind of injections and I was scared to get them. No one explained what it was going to help me with. I already have the pain pump, and the only information that I received was called Interventional Pain Center. I was not to eat 8 hours before and I may have a IV started and it would take 1 to 4 hours. I guess I will call and get one of his nurses to explain to me what it involves. The receptionist said she gets them and I am a lot older than her. I am scared.
                      Thanks for listening, I will let you know what it is all about.
                      Sue041
                      Sue

                      Comment


                      • #12
                        Cytotec

                        Yes me again, I found out about the magazines, I will have to talk to her and see if this will put her mind at ease or if she wants me just to mail her the things that are bothering her information.
                        Sue041
                        Sue

                        Comment


                        • #13
                          Hi Paul,

                          It is Cytotec and you can instill it if your doctor will let you. I would ask for the ability to do that. You don't have to worry about pregnancy so that is not a problem. I did it for eight and a half months and I lost a pregnancy while doing it and was switching birth control from Depo to Implanted Implanon rod. Now, I am having trouble with conception having an Anti-Malarial Hormone level my endocrinologist is not comfortable with. It does not mean I have Malaria, but from an auto-immune disorder.

                          It is in MCG, not mg. The usual and customary dose Dr. Rackley does is 200mcg and instillations twice a day, once by mouth. I get catheters from Liberator medical with Macrobid on them.

                          I am going to ask for a referral to a Rheumatologist for further workup.

                          -Write me if you have any questions. I have an article coming out in the IC Optimist maybe at next publishing. Dr. Raymond Rackley invented the treatment at The Cleveland Clinic. He is a voiding dysfunction specialist and does a lot of IC. I am going matter-of-fact tomorrow. If you want, I could email you the article I found online.

                          It is at: http://emedicine.medscape.com/article/441831-treatment

                          Originally posted by j56 View Post
                          "
                          Today, I started an oral dose of Cystotec (200mcc 4 times per day).
                          Has anyone found this medication to be helpful with severe pain and spasms?
                          I would greatly appreciate and would love to hear any comments/insights anyone might have concerning this medication.
                          Many thanks, Paul
                          "

                          Paul,
                          Would you please clarify your dose for me and the name of the drug-- is it Cystotec or Cytotec? and is it 200 mg/4 cc instilled?

                          A lot of my symptoms are urethral burning which I know if I could find and afford the right PT would relieve the PFD. I'd also like to try external myofascial release and am eventually going to research that.

                          I'm very interested in the dose and method -- by mouth and/or via instillation?

                          Thanks and I hope you feel better soon. I know males can be more difficult to find a solution for and have more pain. Sorry you have IC and good luck.[/QUOTE]
                          Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                          Comment


                          • #14
                            No, it actually improves it some over time. I had miscarriages with it when switching to implanon rod from depo. You get bone pain and so, so cold from it. You have to hold it for 45 minutes and that is really a long time. I am doing Elmiron Instills now and they seem to be helping and when I get this polyp removed and DNC on the 27th it will recover, I hope. I HOPE they give me Percocet at least. I do take Ultram now, but I am hurting. I would be asleep, but I am hurting now.
                            Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                            Comment


                            • #15
                              Isn't is MCG?
                              Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                              Comment

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