Update: Cytotec for 7 months

[sacausa]

I started Cytotec on June 14th 2006, and haven't been on the boards much since then... Just wanted to let everyone know that my IC has improved 99.9%

I would say 100% but that would mean that I don't have to take Cytotec anymore, and I do... :)

I'm really happy that I stuck with it and I can't imagine my life before I started it....

Before I was taking:
Elmiron
Tramadol 4x a day
Neurontin 300mg 2x a day
Allegra
Atarax
Bentyl

I'm sure more, but I can't think of them....

Now I'm taking:
Cytotec 200mg twice a day
Neurontin 200mg at night


To me that's a BIG improvement.... I could probably stop taking the neurontin but for right now I don't want to risk it.... I'm also able to tolerate all foods, but interestingly I've found that I have a major sensitivity to milk/dairy (never would have thought!)....

[ICLori]

I'm so glad for you!!! :) I do wish this helped more people though - it seems like it only helps a minority, and I keep hoping for some medicine that helps 99% of us at least, LOL....

Thank you for letting us know you are doing well....it makes me so happy to hear when someone has found a medicine or combo of meds/treatments that lets them live a good life in spite of the IC!

Blessings,
Lori

[vm]

Awesome, awesome news. :)

[glassd18]

Congrats Sacausa!! Great news!! I am starting Cytotec today!!! My doctor agreed to try it so wish me luck too!!! How long did it take for you to notice a difference?

[leelee88]

What is Cytotec? and what is it used for?

[glassd18]

Cytotec is used usually to prevent stomach ulcers. They often give it to people who take alot of nsaids, but it seems that it has been beneficial for some IC'ers, but not all.

[glassd18]

I have another question about Cytotec. When I picked up my prescription tonight I was only given 1 x 100mg daily. I noticed you are taking 2 x 200mg. Will I see an improvement with this dose I wonder.

[sacausa]

I started with 100mg twice daily and increased the dosage after a few months to 200mg twice daily....

I wouldn't suggest starting with the highest dosage, because even on the low dose, I initially experienced uterine cramping/nausea... It went away after 2wks but I think those side effects would have been much worse if I started on the higher dose....

It took me about 2 months to notice real improvement on the lower dose, then I increased to the 200mg twice daily and that's when I went from about a 50% improvement to the improvement I'm experiencing now.

My initial improvement made me symptom free along with my other medications etc... my final improvement made me symptom free without the help of other medications...

[glassd18]

Thanks for answering so quickly Sacausa.

[sacausa]

Your welcome.

Remember to be careful with antacids when you're taking Cytotec. Most antacids (including prelief, tums etc.) contain magnesium which causes diarrhea when taken while you're on Cytotec.

[glassd18]

Yes I found that out the hard way. Also my uro called me back and said she allowed my dose to increase to 100mcg 2 x's per day, but would never up it to 200mcg 2 x's a day. I think she's leary of this medication for some reason. I decided to go it slow, and try to be patient. I had a horrible night last night. I was up at least 6 times, but I lose count after a while so needless to say I'm so fatigued most of the time. I'm trying not to take to much for pain because I want to be able to feel differences in my condition. I'm not seeing any difference with the Cytotec yet. Thanks again!!

[sacausa]

I seriously wouldn't suggest weaning off the pain medication YET.... first stay on the Cytotec at least a two months before trying that... it takes the medicine a while to start working, and being in pain certainly won't help!

Most doctors don't like this medicine (because it can be VERY bad if you're pregnant, so doctors were trained to be anti-cytotec during med school) but other patients just need to insist!

[glassd18]

Yes I can imagine with the dangers it presents with pregnancy that it is a drug dr's would want to shy away from. Fortunately for me I am prematurely menopausal since 35 years old. I appreciate your support, and will keep you posted of my progress. Thanks again!!!