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  • Cytotec for IC Pain

    My main IC symptom is pain - chronic bladder pain, urethral pain, and PFD-related pain. My interstims are controlling my frequency/urgency/retention, which is great, but I haven't been successful in controlling any pain. I have tried cystoscopy w/hydrodistention, various instillations cocktails, Elmiron (9 months), strict diet adherence, PT, acupuncture, pain killers from ultram to oxycontin, lyrica, elavil, etc. Nothing is helping with my pain. I have lived with this everyday for almost a year and it's taking such a toll. I just need to get control over it and am desperate to do whatever it takes.

    I am reading and reading the boards, looking over the alternative/experimental treatments and came across cytotec and want to know how this med works on pain as I no longer have other issues.

    Thanks for any info/advice y'all can offer. I really appreciate it.
    Namasté,
    Jen


    "Just when the caterpillar thought the world was over... it became a butterfly."


    * Diagnosed w/IBS in 1989
    * Diagnosed w/IC on 11/14/08
    * Tested positive for Celiac Disease on 11/6/09; awaiting lower bowel biopsy on 12/2/09
    * Labs taken to test for Fibromyalgia on 11/9/09; awaiting test results

    IC DIET 24/7 - No gluten, no dairy, no sugar, no caffeine, no alcohol
    Current Vitamins/Supplements:
    Cal-Mag-Zinc; Vit D; Sublingual B12; Gentle Iron; Flaxseed Oil
    Current Treatments:
    Interstim Implant Trial 3/17/09; Perm. 3/31/09; Revision 5/12/09; 2nd Revision 8/18/09; 3rd Revision 9/8/09; 4th Revision scheduled for 11/20/09
    Physical Therapy 1x/week - Myofascial Release/Trigger Point/Pelvic Floor/TENS
    Current Meds:
    Uroxatral - 10mg 1x/day
    Dexedrine - 10mg 1x/day
    Oxycontin - 10mg 3x/day
    Percocet - 5mg 2x/day
    Topamax - 25mg 3x/day
    Tramadol - 50mg 2x/day (as needed)
    Continuous birth control (to limit cycle flares)
    Discontinued Meds/Treatments:
    Elmiron, Urelle, Detrol, Hydroxyzine, Prosed, Elavil, Tofranil, Voltaren, Flomax, Neurontin, Norco, Darvocet, Lyrica, Fentanyl patch; Acupuncture; Rescue Instillations
    Things That Help Me Forget My Pain:
    Henry the Heating Pad
    Warm Baths
    My loving husband & stepson
    My dear friends
    Cuddling w/my beagle Hazel

  • #2
    Hi Jen,

    I would be glad to speak to you about it if you are interested. I did it for nine months and my response was wonderful until I started taking fertility drugs and they found a Uterine Fibroid recently. I wrote an article that I guess might be used in the next IC Magazine that comes out.

    -Blessings,
    April
    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


    • #3
      I take cytotec for Hunner's ulcers. It seems to helping control those but I still have been having lots of flares recently.
      TexasHoney

      Let's keep praying for a cure.
      IC Symptoms began in early 2001
      Divorced : Sept 2002 (Partly due to IC)
      Diagnosed with IC in April 2004
      Most recent injury - Rupurtured Left Achilles Tendon
      Wed Jan 28 2009
      (Ice Storm Accident)
      2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
      Other Injuries
      Broken Left Ankle - July 2004 ( fell off ladder)
      Broken Left Ankle (Again) - May 2005 (car accident)
      Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

      CURRENT MEDS
      Elmiron, Pyridium

      Comment


      • #4
        Thanks April & TexasHoney. I am seeing my urologist in a couple of weeks and am going to discuss this with her in detail. Do either of you notice any particularly bothersome side effects with this medication? I am aware of the fertility risks but my husband and I are not having anymore children so that won't be an issue. Just curious about any day to day stuff you may have to deal with.

        April - during the 9 mo. you were taking Cytotek, did you find you could reduce your pain meds? My fantasy/hope is to be able to stop the pain meds altogether but it's so hard to imagine that at this point.

        Thanks again for the info!!
        Namasté,
        Jen


        "Just when the caterpillar thought the world was over... it became a butterfly."


        * Diagnosed w/IBS in 1989
        * Diagnosed w/IC on 11/14/08
        * Tested positive for Celiac Disease on 11/6/09; awaiting lower bowel biopsy on 12/2/09
        * Labs taken to test for Fibromyalgia on 11/9/09; awaiting test results

        IC DIET 24/7 - No gluten, no dairy, no sugar, no caffeine, no alcohol
        Current Vitamins/Supplements:
        Cal-Mag-Zinc; Vit D; Sublingual B12; Gentle Iron; Flaxseed Oil
        Current Treatments:
        Interstim Implant Trial 3/17/09; Perm. 3/31/09; Revision 5/12/09; 2nd Revision 8/18/09; 3rd Revision 9/8/09; 4th Revision scheduled for 11/20/09
        Physical Therapy 1x/week - Myofascial Release/Trigger Point/Pelvic Floor/TENS
        Current Meds:
        Uroxatral - 10mg 1x/day
        Dexedrine - 10mg 1x/day
        Oxycontin - 10mg 3x/day
        Percocet - 5mg 2x/day
        Topamax - 25mg 3x/day
        Tramadol - 50mg 2x/day (as needed)
        Continuous birth control (to limit cycle flares)
        Discontinued Meds/Treatments:
        Elmiron, Urelle, Detrol, Hydroxyzine, Prosed, Elavil, Tofranil, Voltaren, Flomax, Neurontin, Norco, Darvocet, Lyrica, Fentanyl patch; Acupuncture; Rescue Instillations
        Things That Help Me Forget My Pain:
        Henry the Heating Pad
        Warm Baths
        My loving husband & stepson
        My dear friends
        Cuddling w/my beagle Hazel

        Comment


        • #5
          Re: Cytotec and IC Pain

          Hey Chasing Bliss,

          I would say Cytotec is worth it. It did give me my life back, but you have to be patient with it. It made me quite nauseated and cold to the bone, but other than that.....well, it was worth it. The sad thing is, my symptoms have returned. But that is most likely due to the Clomid and fertility drugs. I do not ovulate right and we have had 4 miscarriages. The endocrinologist I see at WPAFB said it was due to inflammation and IC and that WHEN we are successful he will be putting me back on steroids. (Yay-get to get fat but I guess worth it if I can stay pregnant).

          So, in a nutshell I would do it all over again. I did instillations of it for nine months and while hard, it was worth it. My husband is just 112lbs soaking wet so he enjoyed me being cold as opposed to being so hot all the time with medications. As for the pain factor, well it really did not help mine. It actually hurt to do it sometimes and that is why after I did it I usually took something for pain. But I would say hang in there because you must hold it in about 45 minutes (that was my recipe) and then urinate it out. Sometimes I couldn't so I would just cath again.

          Afterward though (until starting Clomid), I was doing great. I worked the most I had ever worked with this disease. I did go off pain medications temporarily only to be put on Lidoderm and Ultram occasionally when it is bad. Lidocaine patches are a godsend.

          Let me know if you have any questions. I wrote a story for The IC Optimist magazine about this so if you have any questions, please contact me at [email protected].

          ~April

          Originally posted by chasingbliss View Post
          Thanks April & TexasHoney. I am seeing my urologist in a couple of weeks and am going to discuss this with her in detail. Do either of you notice any particularly bothersome side effects with this medication? I am aware of the fertility risks but my husband and I are not having anymore children so that won't be an issue. Just curious about any day to day stuff you may have to deal with.

          April - during the 9 mo. you were taking Cytotek, did you find you could reduce your pain meds? My fantasy/hope is to be able to stop the pain meds altogether but it's so hard to imagine that at this point.

          Thanks again for the info!!
          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


          • #6
            Hi there...Denson prescribed this to me today per my request

            I will keep ya posted on it. Did you ever give it a shot? Hope you are recovering well. You are in my thought.
            As I think, so I shall be....

            I have had IC for 4.5 years now. I also have fibro, sjogren's syndrome, and vulvadynia. I live in immense pain. I often daydream of life before this demon . When I feel good, I embrace it with all of my heart! I pray that someday I will feel 100% again, we all deserve it!

            Medications:

            Vicodin (as needed, so daily!)
            Percocet (morning & night)
            Klonopin (.5 mg at night)
            Zanaflex (2 mg each night)
            Thyroid med for low thyroid (hypo)
            leuko-stim
            Vitamin D (4000)

            Diagnosis:
            IC, CFS, Fibro (it is really bad it has taken so much from me and changed my life), Anxiety, Depression from it all, & Hypothyroid.

            Comment


            • #7
              Scratch this med...not going to take it afterall

              the more I read about it, the more is scared the living you know what out of me. It also said it can cause a stroke, and my aunt had a stroke 2 days ago, so there is no way I am going to take a med that says flat out, on its face that it can cause a stroke, amongst other things I have read about it. I am desparate at times, yes...but...I will not continue on this subject as it appears to be a touchy one.
              As I think, so I shall be....

              I have had IC for 4.5 years now. I also have fibro, sjogren's syndrome, and vulvadynia. I live in immense pain. I often daydream of life before this demon . When I feel good, I embrace it with all of my heart! I pray that someday I will feel 100% again, we all deserve it!

              Medications:

              Vicodin (as needed, so daily!)
              Percocet (morning & night)
              Klonopin (.5 mg at night)
              Zanaflex (2 mg each night)
              Thyroid med for low thyroid (hypo)
              leuko-stim
              Vitamin D (4000)

              Diagnosis:
              IC, CFS, Fibro (it is really bad it has taken so much from me and changed my life), Anxiety, Depression from it all, & Hypothyroid.

              Comment


              • #8
                please anyone who had taken it or knows about it share what you know? is cytotec a shot or pill what kind of med and what does it do????????????? I do want more children does it affect fertility?
                my name is Katie, 22 yr old mother & nursing student. I want to be a writer and midwife.

                I have severe IC w/ hunner ulcers and urethritis with lesions ENDO, chronic pelvic pain, PFD adhesions, scoliosis, arthritis,migraines,asthma chronic pain.

                Mother to a beautiful little girl. She has my heart and she's everything to me. Thinking positive and consciously untensing tense muscles helps a ton!!!! physical therapy also helps a lot.

                Comment


                • #9
                  What I know about cytotec

                  I went to Cleveland Clinic and saw a doctor there - he was extremely arrogant (there are other nicer doctors there). He gave me a script for cytotec. I came home and researched it. I decided it was not for me. If you still have a uterus (which I don't) and are thinking about having more children - I would definately look at the studies done on this and read what people who have had it had to say. It can also be instilled, but usually the doctor wants you to take it orally first. Although, he said only about 3% gets to your bladder this way and you may need to come back in 6 months to try the instills. Again, I would really research this drug.
                  Teresa
                  Teresa

                  We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                  Comment


                  • #10
                    I took Cytotec for IC, but also for stomach troubles which is what it is originally for. It is only harmful to take if you are trying to get pregant or are already pregnant because it can cause you to have uterine contractions, and miscarry. I felt like my stomach was empty at times. If you start it I would try to take a small dose first. I even cut the 100mg (I think that's what the mg was) in half and then work your way up. There is a girl on here who had great success with it, but I don't know if she is still on the IC network, and if she still takes it, but it gave her her life back. We are all so different and what works for one person may actually flare another so you have to make sure you do one thing at a time, and give it some time. We are all so desperate for relief that it can be hard to do, but have patience with each thing you try. I was so confused, and still am sometimes, but now I know that the best thing I can do is watch my diet carefully first and foremost. The ID of the girl who took this drug successfully is Sacausa I believe. Good luck!!! There is another person too who had success here, but I can't remember their ID. Here is a post from Sacausa:

                    http://www.ic-network.com/forum/show...hlight=saucasa

                    Comment


                    • #11
                      Snowden1,

                      I went to CC also and my thoughts exactly towards the uro you are mentioning!!

                      I tried his protocol for a yr, I did instills of cytotec 100mgs, lidocaine, sodium bi-carb, elmiron, and kenalog 4-5 times per day. Did nothing but numb my bladder for a very short period and let me tell you the side effects from the cytotec were hell. I don't care if it happened to be 90 degrees out side. I felt froze to death and after each instill my fibro hurt to the max.

                      I stopped all of his instills and just do reg ones at my uro office and I use the Gaba-IC about once a week. I'm going to try using something else soon. I'll keep you posted on that one.

                      So, my thoughts would be to never use it ever!!!!!!

                      Snowden1,

                      Have you been to one of his "group appointments"? I was there in 08 and did not receive any info for one this yr. Just wondering.
                      I found some of his info to be very contradicting!

                      Hugs and 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


                      • #12
                        Cc

                        Mary,
                        They did call me for the group apt., but since I never took the drug I thought it probably would not be a good idea (haha). Yeah, he was a big jerk to me. He did not even examine me (he had his associate do it). Then he picked up the paperwork I brought in (my own personal info) with other doctors I had seen and info on cystoprotek and aloe vera. (All while I am being examined by the other guy). He ask me how much these doctors charge (if they are private pay?) Also, how much the supplements cost. Then he explained the cytotek as something natural found in the body, but my body probably doesn't make it. Then he told me to "relax" and go home and "have some wine." Also, I was in the room for an hour and a half before anyone came in to examine me. I had to keep getting dressed and undressed - so I could run to the bathroom across the hall.

                        Anyway, sorry to vent like that, but people shouldn't be treated like that. I am sorry about your experience - we all want something to work so badly.
                        Teresa
                        Teresa

                        We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                        Comment


                        • #13
                          May I make a statement here about care at the Cleveland Clinic. If it is the Urologist I have, he is a wonderful specialist. He can have a brisk bedside manner at times, but his expertise in this area far outweighs any of this stuff you all have mentioned. So, about Cytotec: I did it for nine months straight, three times a day mixed with Lidocaine and Heparin. I want to say my dose was 100mcg crushed and dissolved into Lidocaine and Heparin instillation. I was off ALL pain medications until recently when I hurt my knee and now I have a frustrating antibiotic resistant kidney infection of some sort...(we should know the bacteria tomorrow or the next day and have more info on what it responds to)....but the thing with Cytotec is....yes, there are a lot of side effects. I wanted to give up a few times because being from the South in Alabama and moving to Ohio in the FREEZING cold weather, it chilled me to the bone, but I stuck it out and I am STILL glad I did.

                          No, it does not affect having future children. It, however, does cause and can cause m/c so if you're on it for a nine month period you need to make sure you are on a reliable birth control method. I had the Implanon rod inserted for the duration of that treatment. The effects of the medication....side effects...wear off after about a week after you're done with the nine month regimen.

                          I had a great experience with the "group appt." I had in July or sometime this summer at his office as I had my last hydrodistention on 8/19 and all told, the combination of those therapies has done well for me.

                          Am I off pain medications completely? No. Especially now, I am taking just Vicodin at night before bed with Ambien so I can rest since I have this Kidney infection, but I do hope soon that the antibiotic they choose is working well. I started Levaquin 500mg once a day three days ago and I feel some better, but I am still feeling the symptoms so I am wearing like two lidoderm patches on my back right now and one over my bladder. Those things are wonderful for pain and are NOT sedating.

                          Also, something else I see on here as a common theme is where people are taking medications such as Voltaren, Aspirin, Ibuprofen, etc. and my specialist at CC was right about that....that these medications exacerbate and make IC much, much worse...so they DO NOT use them. Their protocol for pain is Ultram, instillations and Valium, which they will prescribe, no questions asked. I get 10mg twice a day if I need it and I have needed it this week.

                          Anyway, I hope I answered some of the questions asked here and if there are more, please email me at [email protected].

                          -April
                          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
                            Oh, and check out the emedicine article here at the end of my signature. This is my go-to for information because it actually mentions the physician at Cleveland Clinic and his invention of the instill therapy. The only thing in that article that is definitely wrong is that it has references to using NSAIDs. When I first went to CC, I was on 800mg Ibuprofen and that was the first thing we stopped. Then he distended my bladder and though it hurt like no one's business, I don't care because he ordered enough I.V. medication to make me really comfortable. Anyway, we already have my next one scheduled for 2/10/10. I currently, by the way, instill Heparin, Lidocaine and Elmiron in my bladder three to four times a day. Also, they added an Oxytrol patch which controls urgency and frequency and it is awesome! Well, hope this helps iron out any questions. :-)
                            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
                              Cc

                              April, I'm glad you had a good experience and this worked for you. I hope you continue to feel better.
                              Teresa
                              Teresa

                              We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                              Comment

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