Trial of Cytotec

[kathleentopor]

I am a long time IC'er. I had been doing well on elmiron for years, but had a major flare last year, and I am still not back in remission after 10 months, and have tried all kinds of extra things including Aloe, Cysta-Q, cystoprotek, and even a course of antibiotics. I am just starting a trial of Cytotec. I will post so in case anyone is interested, they can hear from one more person who has tried it. I am taking a lower dose to begin, and will work my way up to 200mcg three times a day. So far so good. No side effects day one. If anyone else is currently on it still, please post and update me how it is going for you. Here's hoping for the best.

[SharonA]

:welcome: to the ICN...:) :) :)

I do hope you get great benefits from the Cytotec. It will be interesting to follow your story. Thank you so much for being willing to post about your experience.

[kathleentopor]

Well, Here is a progress report. I am taking 1/2 of recommended dosage and am now having some GI side effects. Fortunately not too bad, so I will stick with it. The IC might actually be a bit better, but I think its too early to tell. If the side effects don't get worse, I will be able to do an adequate trial of at least three months. Here's hoping for the best.

[kathleentopor]

Day 12 doing really well. No more side effects, and much less pain. I sure hope this keeps going.

[SharonA]

I hope so, too for your sake. Thank you for updating your experience. :)

[gigisgirl]

Please keep us updated. I have been thinking about asking my doc for a trial of it. I'm about at the end of my rope with this last year. I have been suffering since August.

[kathleentopor]

I have now been taking Cytotec for 17 days. I definitely have less bladder pain. One of the worst problems I had was that not only did I have frequency, but when I would empty my bladder, instead of relief, I would get this achy pain that was almost worse than the feeling of having to go really bad. I interpreted this to mean that the entire bladder wall was inflammed, and the contraction of the bladder caused it to hurt, kind of like exercising a sore muscle. Anyway, the last few days, I finish peeing, and I actually feel relief. This is a major improvement for me. I have one other thought on this issue. I have heard some of the gals report that on the first few days of their period the IC seemed better. This was my experience, although towards the end of my period, and the first few days after, my symptoms usually got worse. The thing that causes menstrual cramps on those first few days are your body's own prostaglandins. What if the relief that some of us feel on these days is because the prostaglandins are helping the bladder in some way, perhaps improving the quantity or quality of the secretions that coat the bladder. Cytotec is a synthetic prostaglandin. It makes total sense then that it works for me. I would say for any gals that do have improvement on those first days of menstruation, this could help. I will keep posting on how this is working for me here.

[FrankieBee]

I haven't tried Cyotek before, but am very interested - I am 31 and want to have children someday, but not right now. Can you go on cytotek and then off of it when, if you want to have a baby?

[SharonA]

Interesting stuff, Kathleen. :)

[kathleentopor]

Reply to Frankie. Cytotec does not affect fertility, so I'm sure there would be no problem having children later in life. The problem would be convincing a doctor to prescribe it if you have even a slight chance of pregnancy, because of liability issues. I think if you have a doctor who knows you well and knows that you will be fastideous with your birth control, they should let you give it a try. But you would have to discontinue it before you began trying to conceive. I had a really good day today. I can't even remember how long ago I last peed might be 4 hours. That's a record for me.

[kathleentopor]

I don't know if anyone is following my thread, but just in case. I am still taking cytotec. It has been 4 weeks and I am still dong great. I am pretty close to in remission, so I will probably not be posting here except if it stops working or something changes. I am pretty hopeful now, and quite frankly astounded that no one has undertaken even the smallest clinical trial with this drug. It may not be a cure, but it surely does something. The other thing I am doing, is that I have cut out all Motrin or any other NSAID drug because it does not make sense to take prostaglandins and then take a prostaglandin blocking agent. I will have to make due with tylenol.

[SharonA]

I am so glad that this is working for you. That really is wonderful news. I hope it continues. Thank you for letting us follow you during this time. (((Hugs)))