Update: Cytotec, College, Life

[sacausa]

Hey everyone!

A little over a month ago I finished my first year away at college! I'm happy to say that even with all the stresses that came with the spring semester I managed to get "A"s in all my classes and was put on the Provost's honor roll. :smile tee I'm busy taking calculus with analytical geometry over the summer which will thankfully be over with in only two weeks (oooh I have over 68 credit hours now which means that I'm more than haf way done!)... and I'm also volunteering at the Juvenile Diabetes Research Foundation (I don't have diabetes but I wanted to be involved in an organization and help make a difference), I'm helping them plan a huge gala/ball for the fall to raise money for research. So overall life is good! I'm also working for my brother's company over the summer and hanging out with friends or babysitting. Unfortunately, I've noticed that a lot of my friendships have faded away, and I blame IC for that. Although, I have to think, would I have wanted these peope to be my friends if they couldn't handle it when I was really sick?

As far as medications go, I'm now only on Cytotec (for IC), Toprol (for my heart), and Allegra (for allergies) and I'm doing amazing. I'm so happy that I finally only need to take 3 pills everyday instead of the insane amount I was taking a few years ago. My health problems are now an after thought, I'm happy that I no longer have to think about IC before I make plans to do something... that I can order whatever I want at a restaurant etc. The only thing, that I think still bothers my IC is alcohol, for some reason, no matter how well I'm doing, I still can't have alcohol. This isn't really a bad thing, since I'm still underage anyways lol ;) so I shouldn't be having any to begin with! I've also started to work out which is something I wasn't able to do for the last couple of years because I either didn't have the energy or it would trigger an IC flare. I took my first bubble bath in 3yrs the other day which is something so simple ad that so many people take for granted, but it's something that I could count on causing a flare for me in the past.

As far as family, my parents are getting divorced this summer and my mom just moved back to South Africa. Dealing with that has been tough but I'm getting through it. I think their marriage just couldn't cope with the curve balls life just kept on throwing at it.

I'm planning a month long vacation to South Africa for over Christmas break right now! I'm super excited and cannot wait :smile tee

Lots of love,
Carla

[aprilmae]

Carla,

Congratulations on finishing your first year! What an accomplishment.

It feels wonderful to accomplish things even when the medical problems try to interfere!

It sounds like you are still busy even though it is summer. Try to have some fun in there!!

April

[littlemyrn]

Congrats! You should be so proud of yourself.....:smile tee

[icbop]

Congratulations! Hard courses, from what little I remember of them.

Do you happen to know where I can find info to take to my doctor about cytotec? My last one would not put me on it bc of side-effects.


I see a new one in a few weeks.

Thanks so much!

[Briza]

Great to hear that you're doing well with both your health and your classes. Does sound like you're taking some tough classes...I always preferred the hard math during summer sessions rather than a full semester of it. Much less painful and less time to forget what you've learned! Congrats on your A's!! As a bio major I tried really hard to make A's in all my lower level classes, as they only got harder and more tiresome the longer I was in school! That's what saved my GPA. Keep up the great work. Very sorry to hear about your parents' divorce, mine did, too, but sometimes it's best in the longrun. And what an exciting vacation you have to look forward to! :)
Best wishes to you and your family.

[Babs RN]

Carla,
What an awesome job! You have done so well! Analytical geometry was my Achilles heel. Yuck! It sounds like your life is so full. JDF was the philanthropy for my sorority in college and they are a wonderful group of people. Glad your health is doing well, sorry to hear about Mom and Dad. I am in middle of a divorce right now myself and hope that in the end my daughter will survive the hiccups with a minimum of wounding. Luckily she is 6 so we alot of time to work on things. I hope your Mom is well in South Africa now that she has left the States. I went to college with a girl whose dad was a professor of surgery in South Africa and then took a job at the med school at the university I attended. She lived one residence hall away my freshman year and it was amazing to hear about her life there.

Hugs to you,
Barb:hi:

[Butternut]

I am sooooo thankful for Cytotec! It changes lives!

[Briza]

Butternut
Could you please give an update on your Cytotec expereince? I remember you posting about it in the past but haven't seen anything recently. I am very happy to hear that it has helped you so much!
TIA
Bri:)

[Butternut]

Started Cytotec 1/2006 at three tabs per day, spaced out. Almost an immediate relief. No further bladder instillations needed.
These days I eat anything but still find myself watching the amount of red tomato sauce, just in case. Cytotec also helped my acid reflux.
I gradually weaned down to one and a half tab per day. (I take a whole tab at bedtime and half tab during day.) In almost a year and a half now, I felt slight burning once and that was an infection that was taken care of easily, Thank You God.
I will always be grateful to Mr. Norman Smith for posting about his wife's relief with Cytotec, years ago. It has truly turned my life back around and I pray that it continues and that it helps others like it has me.

[bunnykinb]

What are the side effects of this med? What are the risks for childbearing age? I haven't responded at all with Elmiron, Elmiron instills, heparin instills, DMSO instills, atarax or prelief. I feel I am winding down to my last options until I read these posts here.

[Butternut]

Cytotec can cause miscarriage. I am past having any more children, so was not concerned. When I first started taking it at three tabs per day, I noticed a gnawing feeling in my stomach, like you would have if extremely hungry/empty. That feeling eventually went away after a while.
I also noticed a little tenderness of my left breast. Gyno told me to take Vitamin E. That took care of that.
Good luck and I hope you find relief.

[Briza]

Butternut,
Thank you for sharing your expeiences, good & bad with Cytotec. My sister was given it recently to try to induce labor, and I also know from your posts and lori's that it is dangerous for those who are of child-beaing age, but I also have read that effecive birth control can help in getting cytotec treatment. Again, thank you and Carla for giving your updates, especally since this is a med that is not well known for IC treatment and one of the few that actually provides a heaing effect. I hope that both of you have cotinued sucess. Keep us posted!
Bri! :)

[vm]

saucasa - Sooooooooooo wonderful to read how well you are doing! :) I'm so glad you update us periodically on how life is going and how your IC is treating you - I know it helps give a lot of people hope and that's something we're often short on when we have IC.

[bunnykinb]

I wouldn't be complaining so much if my burning was once in a while instead of practically everyday. I am 42, have 2 boys and do not plan on having anymore children. So, the side effect of miscarriages wouldn't be worrisome to me. How many uro's or doctors treat their patients with Cytotec? Just asking since there aren't many threads concerning this one.

Thanks.

[sacausa]

Hey Everyone! Thanks for the kind well wishes! I'll definitely continue coming on here to give updates.... I think most of the success stories stop coming here to post so I want to give people hope that there is some relief out there and it's just finding what works for you, whether it is Cytotec or Elmiron etc.

As far as side effects, I currently don't experience any with this medication. When you first start Cytotec you'll probably experience some mild uterine cramping (like period cramps) for the first two weeks or so but that passes. I also would not suggest starting on the higher dose of 200mcg. It's better to start on the least possible dose of a medication and gradually build up, and it's in your best interest to follow what your doctor says. You never know, if you're on a different medication that may adversely interact with Cytotec or if you have a medical condition with which you can't take Cytotec (only your doctor knows that).

Cytotec has horrific side effects in pregnant women and it's frowned upon by the MD community to use it to induce labor. In the past, Cytotec has caused rupturing of the uterus in pregnant women that has lead to death for both the mother and the baby. So this isn't a medication to mess around with if there is any possibility of you becoming pregnant and it's important to let your doctor know asap if you are taking this medication and do become pregnant. The only reason why I'm not worried about this potential side effect is because I'm not sexually active and I am on birth control.... I don't really see Immaculate Conception in my near future ;) Anyways, so if you are able to have kids (i.e., you have not had a hysterectomy) and you are sexually active (even once a year ;)) then you must be on a reliable birth control method when using this medication. Usually women of childbearing age aren't even put on this medication.

Another thing about Cytotec is that you cannot take antacids containing Magnesium while you’re on it, so you can’t take Tums or Prelief etc. According to the manufacturer of Cytotec, if you do take those antacids along with Cytotec, you’ll have adverse side effects like diarrhea and Cytotec not being absorbed properly. Obviously, I have not tested if this is really true or not lol

I don't have the information about Cytotec that I did when I started with it, but there was a small study of only about 10-15 people in Finland who had IC, and did very well with this drug. My doctor prescribed it to me with the knowledge of that study, my intense begging, and with a demand that I be on proper birth control as long as I am taking it.


Much love,
Carla

[bunnykinb]

Well, your success gives me hope. I am tired of getting DMSO, 16 to be exact, without relief of my burning. I have cried so many nights. As mentioned before, if I was healthly and younger, I would consider another child, but at this point, I won't.

[Berkshire Road]

Congradulations, Carla! It sounds like you're going to finish college early. Do you have plans for afterwards, or not yet? Just curious.

I'm so happy to hear that your health is good. That must be such an awesome feeling. Never take it for granted! Good luck, and we do hope to keep hearing from you.

[glassd18]

Congrats Carla, and good to hear you are still doing so well on the Cytotec. I had diarrhea on it, and also bled very very heavily when I tried it, but now I'm not doing the BCP anymore so no more periods (I have Premature Ovarian Failure (like menopause) so I can't get pregnant) I've thought about giving it a second try.

Butternut same to you: I'm glad you are also having such success on it!!!

Di

[sacausa]

Sorry for taking so long to reply! These last couple of weeks have been really hectic... I'm actually planning on going to medical school after university (I'm a chemistry major on a pre-med track). I shadowed a cardiologist a week or so ago, which was really interesting.... and I'm finished with calculus I and I got an "A"! So excited about that :) anyways, my best friend visited for two weeks with her baby, so if I find time I'll post some pictures from that visit later!

[Bessie]

So glad you are doing well in school and with your IC.
Sorry to hear about your parents getting a divorce. It is hard on a family. My parent got divorced when I was a teenager. Sometimes it is for the best. I will keep you and your family in my prayers :pray:

Keep up the good work......we are all proud of you :smile tee

[sandy199]

If you don't mind me asking, How did you get well?

Do you think that it was the Elmiron or did your body just go into remission on its on? I am desperately looking for hope right now.

Also, do you have Mild or Moderate IC? Thanks so much, Sandy
PS Did you ever have awful horrible pressure in your bladder?

[sacausa]

Thanks again everyone for the kind words! My parent's divorce was finalized on Aug 1st and after a day of being upset, I just moved on...

Anyways, Sandy, I was on Elmiron a long time ago and in no way do I think it helped me get better. Does that answer your question?

[libertas]

Sorry for taking so long to reply! These last couple of weeks have been really hectic... I'm actually planning on going to medical school after university (I'm a chemistry major on a pre-med track). I shadowed a cardiologist a week or so ago, which was really interesting.... and I'm finished with calculus I and I got an "A"! So excited about that :) anyways, my best friend visited for two weeks with her baby, so if I find time I'll post some pictures from that visit later!

Hello Carla

Thank you very much for your great success story.
I talked with my doctor about Cytotec.
He allowed me to try it.
I envy and am PROUD of you very much.
I want to go to med school but I don't have enough money lol
Please become a Great doctor:-)
I believe that you can do it.

Best regards,

P.S. My doctor's research paper written in English is going to be published.
He said that this theory makes great progress in IC.
Could you have your doctor read the research paper? Of course I wish that you read it too.
When the research paper is published, I will inform you.

[sad0616]

Hello:hi: I am new to the chat room/forums. I have been reading all the information I can find from people who are taking or have taken Cytotec. I go to my URO next week and I would like to discuss this possibility with some knowledge. I have read the study done in Ireland(?).

I am so happy for those that I have read about that have gone into remission.:woohoo:

I was diagnosed with IC a couple of years ago, FINALLY. And have been fighting the fight ever since. It has been an uphill battle but I truly believe this has happened to me for a reason. I do believe that I will be healed:smile tee

Thanks in advance for any feedback.
sad0616

[libertas]

Hello:hi: I am new to the chat room/forums. I have been reading all the information I can find from people who are taking or have taken Cytotec. I go to my URO next week and I would like to discuss this possibility with some knowledge. I have read the study done in Ireland(?).

I am so happy for those that I have read about that have gone into remission.:woohoo:

I was diagnosed with IC a couple of years ago, FINALLY. And have been fighting the fight ever since. It has been an uphill battle but I truly believe this has happened to me for a reason. I do believe that I will be healed:smile tee

Thanks in advance for any feedback.
sad0616


Hello and welcome, sad0616 :welcome:

I have read a research paper too. The study which you have read is 『Clinical response to an oral prostaglandin analogue in patients with interstitial cystitis』by Department of Urology, Belfast City Hospital, Northern Ireland, isn't it?

We all patients can discuss and sometimes suggest the new way of treatment of IC with doctor

Yes, we can act positively

Your positive attitude of fighting to IC encourages many patients and gives them hope. Thank you so much.

[bunnykinb]

Carla,

I asked my uro what other options do I have besides my current DMSO. I have already had monthly heparin and Elmiron instills and can't take Elmiron orally. He said well, DMSO, Elmiron and bladder stretching are the main things done for IC. I would have thought that going to a well known university doctor in California, that University would have been better. I don't know if I should ask my primary care doctor for a referral to another university which has been mentioned at this website, or ask my current uro for Cytotec.

I am tired of pain.

[cc_orchids]

bunnykinb,
Can you PM me your doctor's name. I have a suspicion it is the one I am seeing in October. I had placed all my faith that he would know what is going on and that he would make me better.

Thanks,
Claudia

[bunnykinb]

I will do. Sorry, my son has been occupying the computer until school starts.

[bunnykinb]

I don't understand why only one person from all the thousands of threads here has tried Cytotec. It seems promising for my unhelped bladder.

[glassd18]

I have tried Cytotec!! I had some problems with it. I may try it again some day.

[bunnykinb]

What problems did you have?

[born2swim]

I was wondering about Cytotec... I have failed at all the standard treatments for IC, so now I'm looking at other meds. Did you research this drug first? If so, would you share with me what you found out (or links you may have)? Are you happy on this drug? Are there unpleasent side effects?

Thank you!!!!

[glassd18]

Hi Bunnykinb:

Severe diarrhea, and I also had extreme menstrual bleeding (it can cause uterine contractions which is why woman of child bearing years who plan to become or can become pregnant should not handle or take this drug). I no longer have my menstrual cycle (menopause due to premature ovarian failure) so I may give it a try again. I was using BCP's last time, and even though I don't have periods naturally, I do when given Hormone Replacement Therapy as a birth control pill. I don't use BCP anymore. Sorry if that sounds confusing!!!

[bunnykinb]

I just can't believe that there are not more posts about this medication. I still have my lovely period; I am 42 and don't know when menopause will creep into my life.

[SoTiredofIC]

Hi Bunnykinb,

I asked my urologist about taking Cytotec during my last visit in December of 2006. My uro is terrific, he is willing to talk about all new things that are being discovered with IC and he will pretty much let me try any medication out there. I had a problem with my insurance company one time and while I was sitting in his office, he called the insurance company and reamed them a new one. He said that "No patient of mine is goign to be in pain because of your idiotic rules! I am telling you, she needs this dosage and she must have it, do you understand????" They were scramblign to send me my meds then!

He did have a problem when I requested the immunosuppresents, he said he is scared that I might develop cancer. And, I seem to be doing pretty well with the Cytotec (along with my laundry list of other drugs I take!) so I'd like to reserve the immunosuppresent in case someday my IC gets a lot worse.

Anyhow! Once I had been taking the Cytotec for a couple of months, I noticed that I didn't have as much pain or frequency. Now, after almost 10 months on it, I feel very good. I am so thrilled that now I can even drink Diet sugar free Root Beer! YEE HA! After 4 years on water, milk and pear juice, it's so GREAT to be able to drink something different for a change!!!! Of course, through trial and error, I've found that I can't drink it when I first get up, I have to have my water and some food in my system before I can drink the root beer.

I still can't eat tomatos (only my MOST favorite vegetable of all :^( ) or drink coffee, but I have noticed that I am able to eat a few more things than I could before.

It's worked great for me, I'm on all kind of other drugs for this crappy disease but the addition of this one has definitely eased my symptoms. I used to get a flare at least 4 or 5 times a year but since I've been on this stuff (knock on wood!!!), I haven't had any. I can sit for 3 or 4 hours and not have to "go", sure has made riding in the car a lot easier.

When I first started taking it, I had a lot of uterine cramping so I cut the pills in half until I got used to it. I now take 2 pills of 100 mg each in the morning and two at night. I now sleep through the night unless I haven't exercised that day.

My uro has said that in his experince, people do better on a drug "cocktail" than one single medication. Sure has been the case for me.

I currently take:

Prevacid 30 mg (for GERD)
Tricor 145 mg (for high triglycerides)
Levoxyl 175 mg (slow thyroid)
Elmiron, 100 mg 1 in the morning, two at night. (I also open the capsule and pour the powder in with the water that I take the other drugs with it, for some reason the capsule itself gave me a headache.
Bentyl, 25 mg twice a day
Vistaril, 50 mg at night
Elavil, 10 mg at night
Tramadol 25 mg one in the morning, one at night
Cytotec 100 mg, 2 in the morning, two at night

Once I got on the Cytotec, I tried to drop some of the other meds but had an immediate recurrence of pain. After 6 years of pain, I'll take all those drugs to be almost 100% pain free!

I also take Calcium, Glucosamine Chond. and baking soda.

I've found that when I have burning, I've either eaten something that is irritating my bladder or I haven't had enough water to drink. I take some baking soda and drink a lot of water and usually feel better.

I made the mistake of riding bikes with my husband last Sunday, it's a pretty challenging trail course and my bladder was NOT happy with all the jarring. I had pain for two days but it seems to have disappeared today.

So, if I were you, I definitely try Cytotec, it made a big difference to my IC. The improvement wasn't immediate but as time goes on, I feel much better than I ever did (before I got this crappy disease anyway). I only wish that we all had the same experiences with IC, then things that worked for one person would work for all of us.


Sorry this post is so long, I tend to go on and on and on and... But, I'd encourage you to try all the different meds, you might find the "cocktail" that works great for you!!! SoTiredofIC

[glassd18]

I just started Cytotec again. I'm giving it another try. This time I'm taking it slowly, and will increase a little at a time. Hopefully this time I will see a positive result.

I read that Cytotec can increase bicarbonate (a natural antacid in the system), and so somehow I feel that this is why it works for some people. For example I will drink sodium bicarbonate if I'm flaring and it helps to calm my bladder. I'm not entirely sure, but it made sense to me.

Wish me luck!!!

[glassd18]

Well I've been on Cytotec for two weeks now, and I'm up to two 100mg/day. What I would like to know is how gradual was your improvement because I am starting to have less frequency, and to feel better in general in the bladder dept. Was your remission all of a sudden or was it a little at a time? I'm fighting some sort of virus right now too, and am hoping that that is not the reason why my bladder is better. I tend to have less bladder pain when my body is busy fighting something else. I am not getting my hopes too high, but am hoping that it is the Cytotec taking effect.

[sacausa]

Hi Glassd18, how did you end up faring on the Cytotec? My improvement was very gradual and it was probably about 6-12 months before I went into complete remission. I would really like to find more research on Cytotec, there seems to be very little written about it online.