Cytotec side effects

[Calico_Lassie]

I have recently started taking cytotec. I started at 100mcg twice a day and went up to 200 mcg three times a day as that is what the study in Belfast used.

My IC pain, frequency and urgency went completly away and my bladder capacity improved. For the first time in almost 20 years I can sleep through most nights.

However, my muscles hurt so much I couldn't take it and I became very anxious as well. I also have severe FMS and this pain is much more than any I have experienced before. I also got severe muscle tension and find it difficult to sleep since starting this drug at the higher doses. I take sleeping pills at night but I have to have a nap in the late afternoon to function in the evening and I usually can't sleep. I just lay there in pain.

Has anyone else who uses this drug experienced this side effect? (Muscle pain/muscle tension/anxiety)

The uterine cramping and nausea went away for the most part at about the time that this started up. Should I expect this to go away in time too?

At a lower dose the pain is much less but it doesn't help my IC as much. I went back to a lower dose anyway though and hope to be able to increase my dose again soon.

There are a lot of drugs that will help the FMS to a small degree but they aggrevate the IC. This is the first time I have had a drug that helped the IC and it aggrevates the FMS.

The cytotec also improved the VV pain that started at the same time as the IC in the late 1980's.

FMS = Fibromyalgia Syndrome
VV = Vulvadynia

[sacausa]

I have also experienced great relief with Cytotec. No, muscle pain etc. though!

I don't have FMS though, and I'm not very familiar though.

(Only an opinion/suggestion).... maybe the FMS drugs that flared your IC before the Cytotec, won't flare it now that you're taking Cytotec and your IC is under control? That would be what I would look into, if I were you...

[Calico_Lassie]

That is what I was thinking too, but first I need to comfortably be at full dose of the cytotec before starting anything new.

Since the FMS has gotten real bad I get side effects from everything and I don't think I could physically deal with side effects from two drugs at the same time.

I am just wondering how long do side effects generaly last if they are the kind that goes away with time?

[Butternut]

I have been taking Cytotec for eight months without any side effects except maybe a slight increase in heart rhythm irregularities. All my life if I drank caffeine I noticed a feeling of "skipping" of my heart. So now I notice it just a little more, not much. And it is so worth it for me to be able to live a normal life, outside of my bed/bathroom. After all these months on 500 mcg of Cytotec daily, I can now eat most everything (still too chicken to try much catsup, but did have some on a cheeseburger a couple wks ago, without problems).
Cytotec has turned this person's misery into a normal, blessed life again!

[Angeles]

What are the most commont side effects of this med on IC patients?

Where can I get more info on Cytotec. I stopped Elmiorna and seeing my uro in a few days and I want to ask her about this medicine.
It seems that not so many ICers are on this drug, why?

[ICLori]

SMR, I think one of the reasons not so many IC'ers are on Cytotec, is that it can be a very dangerous drug for a woman of child-bearing age. It can cause miscarriage or even maternal death in the case of pregnancy, and although a woman might be using a reliable birth control method, there is still always the chance of an accidental conception (except in the cases of hysterectomy or surgical birth control.) There may be other reasons this drug is not more popular, but I think that is probably the biggest one.

Blessings, and good luck to you, with whatever med you decide to try next,
Lori

[Angeles]

WOW ....thanks Lori. Now I can certainly see why it is not so popular.
I'm in those "child bearing ages" and would love to have a child in a few years if God permits it.

[ICLori]

Yup, it sounds like Cytotec is not the right medicine for you, at least not now. Maybe after menopause!

Blessings,
Lori

[glassd18]

Talked to my GP today about Cytotec a bit for IC, but she didn't say much. I think she likes to leave the IC to my Uro. I did find out though that my Uro is sending reports to my GP, and that was great news. They are all on the same page!!! Cool!!

[redfaced]

Okay, so what is the difference between Cytotec and CystoProtek?? Can you buy cytotec like you can CystoProtek, or is it a prescription?

[ICLori]

There is a HUGE difference between Cytotec and CystoProtek. CystoProtek is a supplement designed for IC that you can buy over the counter, and Cytotec is a prescription drug that was originally created to help stomach ulcer patients.

The only thing that is the same between the two is that they both begin with the letter "C."

Blessings,
Lori

[redfaced]

Why don't physicians recommend Cytotec rather than Elmiron? I'm confused.
I guess I was assuming that Cytotec was similar to Cystoprotek. I haven't heard of many on this site who take the Cytotec. Does it work as well as the Elmiron?

[ICLori]

I honestly don't know how Cytotec compares to Elmiron in terms of effectiveness, there just haven't been large enough studies yet on Cytotec to say. Of the people here who have tried it, it seems to be that it helps maybe about 20% of them. That's my best estimate anyway.

Doctors are reluctant to prescribe Cytotec because if a woman becomes pregnant, it can cause miscarriage and even maternal death. So it is a very dangerous drug for a woman of child-bearing age to take and most docs won't prescribe it to any woman who is capable of bearing children.

Cytotec is therefore much more risky and dangerous for most of us than Elmiron. So that's one good reason why Elmiron is prescribed more often.

Blessings,
Lori

[Butternut]

Still doing great on Cytotec!!! I eat anything that I want except I limit chocolate. No burning, rarely have lower backache. I am down to two tabs per day, half in morning, half in afternoon and a whole tab at bedtime. Maybe eventually I will not require Cytotec.
I am so very thankful.
Norman A. Smith wrote on ICNetwork about how his wife was cured. (Archives 2004?) We need to keep spreading the word.
Thanks to Norman A. Smith for telling us all about Prostaglandins.

[ICLori]

Butternut, I'm so glad!!! I agree that Cytotec should be one of the drugs in our arsenal to treat IC, as long as proper precautions are taken. It doesn't help everyone, but for those it helps, it seems to help quite a bit.

Blessings,
Lori

[Deana D]

Does anyone have an opinion about either of these drugs. I was taking the elmiron for over a year. Then I saw a different uro and she suggested the cytotec and it seemed very helpful for 4 months but now Im back in hell. Im was currently takeing 200mg a day. My other uro says the elmiron is the only way to go and go back on it. I seem to feel worse when I take it so at this point Im not sure who to belive. I guess I cant seem to find any doctors that agree with each other and that seems to make things much more confusing. Since I was diagnosed I have been through the gamet with tests and more and more pills. I dont have to worry about the child bearing, because I dont have a uterus any longer.

[Deana D]

lori, I have read your posting and you seem to have been struggling with this for some time. Bless you, this is a nightmare that i wouldnt wish on anyone. The worst part is finding a doctor that has enough time to treat you like a person and not a plant. I didnt have a problem getting the cytotec, but I dont know if the amount is right she started me off with 1 100mcg and day then two, now I am just in limbo because my uro/gyno doesnt seem to think that it works at all. Well the first few months were great I could have about anything to eat and feel fine, then it just seemed to get worse again. So now I am stuck between two dotors one uro is a female just moved to the area and is right out of school and the other is a male who well has been around a while. So I guess it is old school verses new school. They also put me on the amitriptylin two 10mg a day, I thought I was gonna fall asleep at work today. I also take ultrim or vicodin depending on how much pain I'm in. My family doc has me taking xanzx and sleeping pills. I feel like a walking pharmacy. Now the uro/gryno said to go back on the elmiron but when I take it I feel worse. He just seems to think it is in my head.
Any ideas?