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  • Finding Relief with Cytotec

    Well, I don't want to jinx it, but I do want to share it so here goes. I'm finding relief with Cytotec. My flare has been building over the past few weeks. Last week it was the worst it has been in years. I logged on to see what was new and being discussed. I looked at all the options and side effects of most of the current therapies and decided to ask my doctor about the Cytotec.

    I will say I was very leery about the diarrhea side effect. My IBS has been acting up as well and I wasn't looking forward to making it worse, but at the point I was at the IC was my main focus and I needed to find relief.

    My doctor was open to giving me the prescription. He said it was worth a try.

    I've started slowly with only 50mcg 3x a day hoping to let my body get used to it. Wonderfully, I have noticed results at that low dose and will continue on it as long as it is helping.

    Once I've been taking it for a while I will fill out the chart to add my information to the survey, but wanted to let people know that I have had success with this so far. Monday morning I was in tears it was so bad. Here is is Thursday morning and I feel somewhat normal again.

  • #2
    That is so exciting! I hope others like you try this new treatment and have success! I'm going to stick with my regimen for now, but in a couple months I want to ask my doctor about this!
    Holly
    1/19/2006 diagnosed with PBS/possible IC
    2/1/2006 Elmiron & Elavil 50mg
    3/2006 began PN symptoms
    7/18/2006 broth culture sent (found Strep D) stopped Elmiron & Elavil and began long-term amoxicillin - IC symptoms relieved at last!
    09/29/2006 PNMLT found pudendal nerve damage on rt side (nerve block to be done Oct 4)
    10/20/2006 - lyrica for PN pain (didn't last)
    11/20/2006 - cymbalta for PN (didn't last)
    12/2006 - stopped all meds and started Dr. Moldwin's therapy of valium and PT for PFD, which is still working for me
    UPDATE 7/1/2008 - weaning off the valium...taking 2mg nightly about 5 days a week, so doing great. No more pudendal nerve pain, although I'm careful about how I sit at work and try to exercise to stay relaxed to minimize PFD. A powerplate workout machine helps massage those inner PF muscles, and I take MSM and glucosamine (in MonaVie) religiously, which are both natural antiinflammatories. I feel GREAT!
    UPDATE 2/16/2010 - completely pain free!

    Looks like the "IC" pain caused my PFD, which pinched and damaged my pudendal nerve, which in turn sends out misguided signals to my PF muscles....battling this pain cycle, but at least I have been pain-free bladder-wise for 2 years now!

    JMHO - I don't believe that antibiotic therapy should be considered controversial....the theory that "IC" is a disease should be controversial. I believe that we all must find out what causes the damage to our bladder linings, stop that, and then let it heal. In only 9 short months, I added EVERYTHING back to my diet and have been "IC"-free for 2 years and counting.

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    • #3
      Yeah!!!! I am so happy for you!!!

      If I may ask, what were your IC symptoms?

      Thanks!

      Melinda

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      • #4
        break pill

        has anyone broken a pill of cytotek?
        I have 100 mg tabs and i want only 50.
        Surf Gal

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        • #5
          Hi ellienore, I am on day 47. I think cytotex has helped .I no longer have bladder pain but I still have urethral burning and frequency. I just started taking cymbalta and veslcare for the frequency. I take all 3 and they are helping me more than the cytotex alone. I still have alittle nausea from the cytotex. I have sever IC. So it takes longer for me to get results.

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          • #6
            I broke my 100 mcg pill in half when I started on the drug. I used a pill cutter.
            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.

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            • #7
              how are you now?

              cableigh:
              how are you now? is it still helping?????

              I am starting with 50 mg tomorrow morning. ( have to go someplace later today. )
              Surf Gal

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              • #8
                Just wanted to give an update. I came down with a genuine UTI (blood, bacteria, pus, nitrites, fever, the whole nine yards) about five or six days ago, and got put on Cipro.

                I'm still not back to normal yet. I'm mostly back to normal during the day, but at night I am having some bladder irritability. Even with the Cytotec.

                So I have no idea if this is just lingering irritation from what I was told was a "very bad infection" or if it represents a change in my baseline...but I thought I ought to let you all know.

                I fear for the worst because every other time I've had a UTI, it led to my bladder being worse than it was before, permanently. So I'm really scared at this point my bladder might not get back to normal. I still have a few days worth of Cipro left to take, so of course I will take those until they are finished, but...I'm feeling pretty down about this now.

                If I don't get back to having no pain with the Cytotec, I guess the next step is trying Cyclosporine-A.

                Hope everyone else is doing better than I am.

                Blessings,
                Lori

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                • #9
                  How I'm doing so far

                  Sorry, I've been away. Someone asked about my symptoms. My worst symptom is the constant feeling of having to go. It's one level below thinking you will pee your pants if you don't get to the loo, but enough that it's all you can think about, very uncomfortable. I have pain but not a lot. Mostly at night I have pressure and my bladder almost pulses.

                  I have been able to survive for the past 15 years mostly with only Ditropan. Most drugs are too strong for me. I usually only take a 1/4 and never more than a 1/2 tablet at a time. I always take a 1/4 before bed.

                  Since I also have a bad neck, I have been taking large doses of Nsaids over the past couple of years. I think that it has finally done something to my bladder and that is what caused this big flare.

                  I was in my worst flare in many years when I logged on and found the discussion about Cytotec. Luckily I was able to speak to my doctor at an appointment for my daughter and he gave me a prescription. I started it two weeks ago today. I noticed an immediate result. Within two or three days, I felt so much better. And the stomach problems resolved themselves quickly.

                  I started very low with only 50mcg three times a day. Now I can take 100mcg two or three times a day (always with food).

                  Last night was the first night I have been uncomfortable in two weeks. And I think it was from eating two much sugar yesterday.

                  I'll keep you posted on my progress. I hope that others who are considering trying Cytotec have good luck with it too.

                  ICLori, I hope you get back to the good place you were when I first discovered your posts.

                  Comment


                  • #10
                    Thank you so much, Cableigh, I hope that the good results with Cytotec continue for you.

                    It looks like this discomfort I am having might be the UTI coming back. My pain has been increasing over the last 24 hours, as well as frequency, and I am running a fever a little over 100 and that often means a UTI rather than an IC flare, for me.

                    I am going to the doctor this afternoon and will ask him to take a urine sample to see.

                    I am hoping it's the UTI coming back, maybe not completely killed off from the cipro, because that would mean that maybe there's a chance I can get back to having good relief from the Cytotec.

                    Blessings,
                    Lori

                    Comment


                    • #11
                      I dont know if it's too early to post this, but here goes.

                      I have been in a bad flair for about 5 weeks.

                      I started on Cytotek last thursday, 5 days ago.
                      did 50 mcg that day.
                      Had a strange feeling all thru my guts that night.. but i decided to keep trying.
                      next day 50 mcg 2 x per day.
                      Still stomach upset and felt like someone was sitting on my chest.
                      Next day, 50 mcg 2 x per day.. less stomach distress - AND

                      less bladder burning after urinating.
                      My diary on sunday says " Less buring now. Peed 12 oz with only 20% discomfort."

                      Yesterday, monday, I had the best day in 6 weeks. It started when the burnig after peeing stopped. The pain and burn left, but I still had pressure starting one hour after peeing. I could wait to pee for 2 1/2 hours, at which time I peed 2 cups.
                      Today, I didnt do my marshmellow tea in the morning and i have a very slight burn now ( I have not peed for 2 hours ). Not much at all.

                      I am sooo much better, but it could be from the marshmallow tea and the diet.
                      I am going to continue on the 100 mcg of cytotek for a week. Why up the dose? If I can continue to improve like this, I wont need more.
                      I am also taking 5 mg of atarax 2 x per day. and 2.5 mg of elavil in the evening.
                      I will post again in a couple of days.

                      By the way, there are "good" prostiglandins and " not so good" prostiglandans. ( the not so good ones are in corn oil, other vegi oils, and they induce inflamation if you get too much. )

                      The good ones are found in omega 3 fish oils.
                      So, I am also taking 1500 mg of omega 3 fish oils per day.
                      I use some olive oil on my toast, to balance this out with omega 6.
                      I figure why not help the cytotek with a natural prostiglandin.

                      ellie

                      ellie
                      Surf Gal

                      Comment


                      • #12
                        Hi Lori!

                        I'm so sorry you are having the symptoms again. I still thinking that it is UTI is giving you the problem. Can you ask your doctor to do broth culture of your urine? This way they can found someting. They also will know what kind of antibiotic will work for you.
                        I wish you started treatment and feel better soon. And, get back to having good relief from the Cytotec.
                        I wish you the best!
                        Oxana.

                        Comment


                        • #13
                          Lori,

                          Glad to see your back - but not with a UTI. I have been having major urethral problems and started taking 100 mg of Doxy twice a day - Cirpro does nothing for me. So far, my urine stream is getting stronger although I still feel urgency. I am drinking more water and I am fighting the urge to urinate. I only have enough for 14 days, but I am going to see my GP next week and a new gyne/uro so I am going to discuss the possibility of taking Doxcy for an extended time. I have always felt the the glands around my urethra are causing the bacterial problem. Also, the Elmiron is burning my stomach - I also have a hiatal hernia. I am going to see if one of them will give me Cytotec. I am really happy to hear that the Cytotec is working so well for you. After reading about Cytotec, it makes so much sense to use it off label.

                          Sherry

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                          • #14
                            I wish my doc could do a broth culture - I don't know of any that do except for Dr. F. awhile ago. I don't feel too good on cytotec yet. In fact I'm in a flare and I having a regular culture done, which I know will be negative. I'm getting scared cytotec won't work. I've been on 600 mcgs. for about 2 weeks now and I'm getting a refill tomorrow. I hope it is not making my IC worse. I'm soooo glad it it helping some though and I will stick with it for awhile. Sometimes my gut feels a little funny, but bearable. PV
                            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


                            • #15
                              Well, I must post also. I LOVE ICLori's posts.I read all of them.And went to my pain doc last week and asked for a script to start Cytotek.He was all for it when I showed him all your posts Lori. I had printed them out to show him. So, I have been on it for a week and a half. We will see.I am hopeing for a God Send with this med. I am on every strong pain med,elmitron,evail,etc.etc.And none of it touches the pain I have in my bladder and after I pee.So,I want to be in remission like you all who this medicine is working for.I just want to say-I am in remission........Thanks for all your posts from those who ARE taking cytotek.To learn and keep in touch. Celine
                              Last edited by celine; 03-28-2006, 04:50 PM.
                              Celine in Iowa

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