Announcement

Collapse
No announcement yet.

Misoprostol/Cytotec -- what is your experience?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Misoprostol/Cytotec -- what is your experience?

    From an ICLori post elsewhere:
    each person would put their own post, and put how many days they've been on it, what side effects they've had, and what percentage of benefit they feel they've had (zero to whatever percent) just so that people can get a feel for it. And then I was thinking as time goes by, each person could update their post - like if another month has gone by, they could change the amount of time and show their current level of benefit - or even just adding on.

    If you have spoken to a doctor about it or even swallowed one or more pills, please post here with this info:

    1) How long you took it/how long tolerated it
    2) still taking it or Quit.
    3) side effects you are living with
    4) side efects that made you quit
    5) what percent improvement you have seen in urgency/frequqncy
    6) what percent improvement you have seen in pain
    7) any positive side effects (like ulcer relief etc...)

    I will periodically try to compile the entries into the following post.
    If you want to post an update, you can edit a previous post if the update is not substantial. If it is a substantial update, please go ahead and post a new post.

    because I expect there to be very few of them. We can have any cyclosporine-A takers post here with their data (just make sure you make it clear that it's not for misoprostol but insyead for Cyclosporine-A).

    Thanks everybody :-)
    Last edited by Baba Yaga; 02-21-2006, 11:11 PM.

  • #2
    future post compilations to be put here by me... someday...



    $$$******How long*****Side Effects*****Percent****Positive **
    Per******did you*****living**made***Improvement***Side****
    Month****take it*****with**me quit***F/U***Pain**Effects**

    Butternut...since......breasts tender..............................acid reflux.....
    .............1/24/06.....heart racing.........++........90%......almost gone...........

    Dianne.....tried it..........worsened bladder........................................
    ..............twice............symptoms!! :-( ...............................................

    ICLori.....12/19/2005.....few days........IC in Remission...............
    ...........................intestinal initially............................

    Kathleen...3/10/2006..........................................
    ...................................................................... .........

    Marcie.....2/17/2006......intestinal..............+.....?.........ditched costly
    ...............................lowered appetite......................heartburn med!

    PurpleViolet.......................................................... ............
    ...................................................................... ................

    Twiggy...2/8/2006.......slight..................less pain.............more
    ...............................nausea..............less pressure.........exercise!

    Violet................................................................ ............
    Last edited by Baba Yaga; 03-15-2006, 02:16 PM.

    Comment


    • #3
      1) How long you took it/how long tolerated it
      I began taking Cytotec 1/24/06. Tolerated very well.
      2) still taking it or Quit.
      I take 200 mcg three times per day and want to continue taking it.
      3) side effects you are living with
      Maybe some breast tenderness.
      4) side efects that made you quit
      None
      5) what percent improvement you have seen in urgency/frequqncy
      Sleep longer at night without voiding as often. Less urgency. Never had frequency during day.
      6) what percent improvement you have seen in pain
      Approx. 90% as in almost gone but still there a little at times, so far. Tomatoes still cause a little achiness.
      Post-void burning is non-existant at this time. Over all Cytotec has given me back some freedom to enjoy again thereby reducing the fear that had pretty much overtaken my life the past year and a half. It has removed the dread of the future. The best thing is I don't have to hurt all the time and I have not had to take any more bladder instillations!!!
      7) any positive side effects (like ulcer relief etc...)
      Acid reflux is almost gone. The esophageal burning is gone.
      Started Cytotec 1-24-06

      Comment


      • #4
        Hey you guys, if this works out to help a lot of folks, shouldn't we contact the drug company that makes cytotec? Maybe they could do some more studies and then market the drug for IC. It would make money for them and it would also encourage our doctors to use it more often.
        hugs,
        Janie

        Comment


        • #5
          Absolutely. But that process is typically so slow that those of us who have IC now will stand to benefit from "off label" prescriptions before any study is ever completed. And that is something that can snowball just from ICN activity. The liability issues involved usually keep doctors from actively recommending things off the beaten path of the "standard of care", but if it is something that is used to HELP other things and is not too high risk for women not expected to get pregnant, then a patient proposing it to an open minded doctor (especially if other things have been tried) will have better luck if she can point to the "anecdotes" which will end up in this thread (with hope). And it is important and interesting for us to know and think about the cases in which the misoprostol may have failed for different reasons.

          I should add that arthrotek would also qualify for this thread, as it is cytotek plus an nsaid. (Just a painkiller with a fancy buffering element!)

          p.s. thanks Butternut -- You are our first!

          Comment


          • #6
            I bombed but I'll post anyway.
            1) How long you took it/how long tolerated it.
            3 times day 1, 1 time day 2 then quit.
            Retried months later:
            1 pill and bombed again.

            2) still taking it or Quit.
            quit

            3) side effects you are living with N/A

            4) side efects that made you quit
            the burning and pressure were way more than I normally have and continued even after emptying, not just when full. It wore off in 24 hours the first time and 48 hours the next time. It started an hour after I took it. It got worse with each pill. So the side effects were bladder only.

            5) what percent improvement you have seen in urgency/frequqncy N/A
            6) what percent improvement you have seen in pain N/A
            7) any positive side effects (like ulcer relief etc...) N/A
            Dianne

            My bellydance "sisters" , our dogs, and me.

            Comment


            • #7
              Dianna, we need the people who bombed -- and even anyone who merely raised the subject with their doctor and was told No -- to get a full picture. Thanks for your post!

              Comment


              • #8
                Wow, Baba Yaga, thank you so much for this! I couldn't figure out a way to do this, so I'm so glad you figured out how to organize all of this wonderfully! I think it's an awesome idea to keep track of the Cyclosporine-A trials too - I know there was one post already from a soldier who was using Cyclosporine-A - that's how I first learned about it actually - maybe we could round up old posts like that and cut and paste them? Just an idea. There are a few old posts about Cytotec too.

                Without further ado....

                1) How long you took it/how long tolerated it

                Been taking it for two months now (two months and a couple of days)

                2) still taking it or Quit.

                Still taking it

                3) side effects you are living with

                None at this point - when I first started, had slight nausea the first day, and somewhat loose stools for a few days, then my body adjusted and I was back to normal.

                4) side efects that made you quit

                N/A

                5) what percent improvement you have seen in urgency/frequqncy

                I think 100% - although I'm still trying to figure out if my trips to the bathroom at night are because of unresolved irritation or because my bladder is shrunken from scar tissue and this is as good as it's going to get - will keep you guys updated on that.

                6) what percent improvement you have seen in pain

                100% for sure on this one. It is so nice to be able to drink Cokes, eat whatever food I want (including tomato sauce) and not feel any bladder twinges/pain!

                7) any positive side effects (like ulcer relief etc...)

                None.


                Thank you again so much Baba Yaga, what a great job you've done here!

                Blessings,
                Lori

                Comment


                • #9
                  1) How long you took it/how long tolerated it?

                  about 1.5 months now. it took me three to four weeks to work up to the 800 mg maximum dose.

                  2) still taking it or Quit.

                  Still taking it

                  3) side effects you are living with

                  more frequent bowel movements

                  4) side efects that made you quit

                  N/A

                  5) what percent improvement you have seen in urgency/frequqncy

                  none yet

                  6) what percent improvement you have seen in pain

                  there is some improvement! I am starting to get more exercise and not experiencing as much pain. Less constant pressure.

                  7) any positive side effects (like ulcer relief etc...

                  Able to do more exercise. Less constant pressure! Can tolerate more foods with lactose!
                  Last edited by twiggy; 04-27-2006, 07:49 AM.

                  Comment


                  • #10
                    Thanks Baba for doing this. I hope people will keep posting. My uro wouldn't give me an off label drug, but I am saving these results to show her. Good to hear from people who it doesnt help too. I think the manufacture would be interested in this. It could take a long time, but they may be able to fine tune it for IC. It would benefit future patients - and IC is on the rise.
                    Kim

                    IC 25 years - only in urethra last 10 years (urethral syndrome)
                    Unsuccessful tx:
                    DMSO with heperin, atarax, clonopin, elavile, elmiron, benedril,neurontin,flagyl,diflucan, distention, lots of antibiotics,distention, guifenesin

                    Helpful tx: accupunture, lemon juice, decreased estrogen due to menopause.


                    fibromyalgia - mostly controlled
                    nerve pain urethra, feet

                    Currently taking occasionally lunesta to sleep.
                    control with diet, lemon juice, cabbage broth,ultam, topomax, occasional bendril

                    trying: buffered c, cystoprotect
                    Trigger foods: chocolate, beans

                    Comment


                    • #11
                      I started Misoprostol on Feb 17, 2006, I am taking the generic version

                      1) How long you took it/how long tolerated it
                      I am on day 7, had alot of nausea and loose stools so far, it does seem to be getting better. I am taking 200 mg every 8 hours

                      2) still taking it or Quit.
                      I am still taking it

                      3) side effects you are living with
                      Belly pain, nausea, loose stools

                      4) side efects that made you quit
                      Not even ready to give up!!

                      5) what percent improvement you have seen in urgency/frequqncy
                      I don't have urgency/frequency issues however I do have urethra burning
                      and bladder pain

                      6) what percent improvement you have seen in pain
                      None as of yet

                      7) any positive side effects (like ulcer relief etc...)
                      I have been able to stop taking aciphex for my heartburn and since it is a really expensive drug that is awesome for me

                      I have not really had an appetite since I started on this due to the side effects I have experienced, I am hoping that once I get past this 2 week period they will lessen. I haven't tried any new foods yet but I am looking forward to a big bowl of chocolate ice cream and being able to have sex with the hubby without crying for a week afterwards!!

                      Comment


                      • #12
                        Baba... I like the way you're approaching this. You know, we can do a survey on this too... from the front page of our site. I just signed up for a new online survey service that will give us real time data for large surveys.... and this could be a good addition to that.

                        Jill
                        Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                        Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                        Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






                        Comment


                        • #13
                          Thanks for you input and endorsement, Jill.

                          Comment


                          • #14
                            Thank you, Jill!

                            Blessings,
                            Lori

                            Comment


                            • #15
                              I better post here - I was posting under ICLoris thread of remission, but this is the better thread unless I go into Remission! It was fairly easy to convince doctors knowing I'm past menopause and no dangerous side effects, or effects that would go away if I wanted to stop it. I'm going real slow. 3/1 FIRST PILL - 50 MGS (100 cut in half). Today and for the next few days I plan to take 50mg 2x day and then gradually up it. I'm a little scared of it since I'm prone to IBS. At this particular moment my IC is not real bad. Pain only when I need to void which is after every 2 or 3 ounces or hours, which ever way you want to look at it. But that can change according to diet and in a flash to a feeling of continuing aggravation. My idea of remission is a true increase in capacity without pain no matter what I eat or drink. I'll keep all posted. PeeVee.
                              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                              Comment

                              Working...
                              X