Misoprostol/Cytotec -- what is your experience?

[Baba Yaga]

From an ICLori post elsewhere:
each person would put their own post, and put how many days they've been on it, what side effects they've had, and what percentage of benefit they feel they've had (zero to whatever percent) just so that people can get a feel for it. And then I was thinking as time goes by, each person could update their post - like if another month has gone by, they could change the amount of time and show their current level of benefit - or even just adding on.


If you have spoken to a doctor about it or even swallowed one or more pills, please post here with this info:

1) How long you took it/how long tolerated it
2) still taking it or Quit.
3) side effects you are living with
4) side efects that made you quit
5) what percent improvement you have seen in urgency/frequqncy
6) what percent improvement you have seen in pain
7) any positive side effects (like ulcer relief etc...)

I will periodically try to compile the entries into the following post.
If you want to post an update, you can edit a previous post if the update is not substantial. If it is a substantial update, please go ahead and post a new post.

because I expect there to be very few of them. We can have any cyclosporine-A takers post here with their data (just make sure you make it clear that it's not for misoprostol but insyead for Cyclosporine-A).

Thanks everybody :-)

[Baba Yaga]

future post compilations to be put here by me... someday...



$$$******How long*****Side Effects*****Percent****Positive **
Per******did you*****living**made***Improvement***Side****
Month****take it*****with**me quit***F/U***Pain**Effects**

Butternut...since......breasts tender..............................acid reflux.....
.............1/24/06.....heart racing.........++........90%......almost gone...........

Dianne.....tried it..........worsened bladder........................................
..............twice............symptoms!! :-( ...............................................

ICLori.....12/19/2005.....few days........IC in Remission...............
...........................intestinal initially............................

Kathleen...3/10/2006..........................................
...................................................................... .........

Marcie.....2/17/2006......intestinal..............+.....?.........ditched costly
...............................lowered appetite......................heartburn med!

PurpleViolet.......................................................... ............
...................................................................... ................

Twiggy...2/8/2006.......slight..................less pain.............more
...............................nausea..............less pressure.........exercise!

Violet................................................................ ............

[Butternut]

1) How long you took it/how long tolerated it
I began taking Cytotec 1/24/06. Tolerated very well.
2) still taking it or Quit.
I take 200 mcg three times per day and want to continue taking it.
3) side effects you are living with
Maybe some breast tenderness.
4) side efects that made you quit
None
5) what percent improvement you have seen in urgency/frequqncy
Sleep longer at night without voiding as often. Less urgency. Never had frequency during day.
6) what percent improvement you have seen in pain
Approx. 90% as in almost gone but still there a little at times, so far. Tomatoes still cause a little achiness.
Post-void burning is non-existant at this time. Over all Cytotec has given me back some freedom to enjoy again thereby reducing the fear that had pretty much overtaken my life the past year and a half. It has removed the dread of the future. The best thing is I don't have to hurt all the time and I have not had to take any more bladder instillations!!!
7) any positive side effects (like ulcer relief etc...)
Acid reflux is almost gone. The esophageal burning is gone.

[Janie Miranda]

Hey you guys, if this works out to help a lot of folks, shouldn't we contact the drug company that makes cytotec? Maybe they could do some more studies and then market the drug for IC. It would make money for them and it would also encourage our doctors to use it more often.

[Baba Yaga]

Absolutely. But that process is typically so slow that those of us who have IC now will stand to benefit from "off label" prescriptions before any study is ever completed. And that is something that can snowball just from ICN activity. The liability issues involved usually keep doctors from actively recommending things off the beaten path of the "standard of care", but if it is something that is used to HELP other things and is not too high risk for women not expected to get pregnant, then a patient proposing it to an open minded doctor (especially if other things have been tried) will have better luck if she can point to the "anecdotes" which will end up in this thread (with hope). And it is important and interesting for us to know and think about the cases in which the misoprostol may have failed for different reasons.

I should add that arthrotek would also qualify for this thread, as it is cytotek plus an nsaid. (Just a painkiller with a fancy buffering element!)

p.s. thanks Butternut -- You are our first!

[Dianne]

I bombed but I'll post anyway.
1) How long you took it/how long tolerated it.
3 times day 1, 1 time day 2 then quit.
Retried months later:
1 pill and bombed again.

2) still taking it or Quit.
quit

3) side effects you are living with N/A

4) side efects that made you quit
the burning and pressure were way more than I normally have and continued even after emptying, not just when full. It wore off in 24 hours the first time and 48 hours the next time. It started an hour after I took it. It got worse with each pill. So the side effects were bladder only.

5) what percent improvement you have seen in urgency/frequqncy N/A
6) what percent improvement you have seen in pain N/A
7) any positive side effects (like ulcer relief etc...) N/A

[Baba Yaga]

Dianna, we need the people who bombed -- and even anyone who merely raised the subject with their doctor and was told No -- to get a full picture. Thanks for your post!

[ICLori]

Wow, Baba Yaga, thank you so much for this! I couldn't figure out a way to do this, so I'm so glad you figured out how to organize all of this wonderfully! :) I think it's an awesome idea to keep track of the Cyclosporine-A trials too - I know there was one post already from a soldier who was using Cyclosporine-A - that's how I first learned about it actually - maybe we could round up old posts like that and cut and paste them? Just an idea. There are a few old posts about Cytotec too.

Without further ado....

1) How long you took it/how long tolerated it

Been taking it for two months now (two months and a couple of days)

2) still taking it or Quit.

Still taking it

3) side effects you are living with

None at this point - when I first started, had slight nausea the first day, and somewhat loose stools for a few days, then my body adjusted and I was back to normal.

4) side efects that made you quit

N/A

5) what percent improvement you have seen in urgency/frequqncy

I think 100% - although I'm still trying to figure out if my trips to the bathroom at night are because of unresolved irritation or because my bladder is shrunken from scar tissue and this is as good as it's going to get - will keep you guys updated on that.

6) what percent improvement you have seen in pain

100% for sure on this one. It is so nice to be able to drink Cokes, eat whatever food I want (including tomato sauce) and not feel any bladder twinges/pain!

7) any positive side effects (like ulcer relief etc...)

None.


Thank you again so much Baba Yaga, what a great job you've done here! :)

Blessings,
Lori

[twiggy]

1) How long you took it/how long tolerated it?

about 1.5 months now. it took me three to four weeks to work up to the 800 mg maximum dose.

2) still taking it or Quit.

Still taking it

3) side effects you are living with

more frequent bowel movements

4) side efects that made you quit

N/A

5) what percent improvement you have seen in urgency/frequqncy

none yet

6) what percent improvement you have seen in pain

there is some improvement! I am starting to get more exercise and not experiencing as much pain. Less constant pressure.

7) any positive side effects (like ulcer relief etc...

Able to do more exercise. Less constant pressure! Can tolerate more foods with lactose!

[kimmichele]

Thanks Baba for doing this. I hope people will keep posting. My uro wouldn't give me an off label drug, but I am saving these results to show her. Good to hear from people who it doesnt help too. I think the manufacture would be interested in this. It could take a long time, but they may be able to fine tune it for IC. It would benefit future patients - and IC is on the rise.

[MarcieL]

I started Misoprostol on Feb 17, 2006, I am taking the generic version

1) How long you took it/how long tolerated it
I am on day 7, had alot of nausea and loose stools so far, it does seem to be getting better. I am taking 200 mg every 8 hours

2) still taking it or Quit.
I am still taking it

3) side effects you are living with
Belly pain, nausea, loose stools

4) side efects that made you quit
Not even ready to give up!!

5) what percent improvement you have seen in urgency/frequqncy
I don't have urgency/frequency issues however I do have urethra burning
and bladder pain

6) what percent improvement you have seen in pain
None as of yet

7) any positive side effects (like ulcer relief etc...)
I have been able to stop taking aciphex for my heartburn and since it is a really expensive drug that is awesome for me

I have not really had an appetite since I started on this due to the side effects I have experienced, I am hoping that once I get past this 2 week period they will lessen. I haven't tried any new foods yet but I am looking forward to a big bowl of chocolate ice cream and being able to have sex with the hubby without crying for a week afterwards!!

[icnmgrjill]

Baba... I like the way you're approaching this. You know, we can do a survey on this too... from the front page of our site. I just signed up for a new online survey service that will give us real time data for large surveys.... and this could be a good addition to that.

Jill :)

[Baba Yaga]

Thanks for you input and endorsement, Jill. :)

[ICLori]

Thank you, Jill! :)

Blessings,
Lori

[purpleviolet]

I better post here - I was posting under ICLoris thread of remission, but this is the better thread unless I go into Remission! It was fairly easy to convince doctors knowing I'm past menopause and no dangerous side effects, or effects that would go away if I wanted to stop it. I'm going real slow. 3/1 FIRST PILL - 50 MGS (100 cut in half). Today and for the next few days I plan to take 50mg 2x day and then gradually up it. I'm a little scared of it since I'm prone to IBS. At this particular moment my IC is not real bad. Pain only when I need to void which is after every 2 or 3 ounces or hours, which ever way you want to look at it. But that can change according to diet and in a flash to a feeling of continuing aggravation. My idea of remission is a true increase in capacity without pain no matter what I eat or drink. I'll keep all posted. PeeVee.

[ICLori]

Thank you, PeeVee, I am so grateful to everyone who shares their experiences, good bad or indifferent, so that we all might learn more about whether or not this medicine might be useful as an IC medicine.

Blessings,
Lori
P.S. Good luck, keeping my fingers crossed for you!

[purpleviolet]

No change yet. Started pelvic floor therapy, too. I'll take 300 mg cytotec today and next few days, and gradually up to 600 mg. That is the recommend amount I think from the study.

[violet]

Hi, today is day 32. I am finally feeling it is helping me . It took a long time to get to my urethra, I had burning for a long time . the last 2 days I have not had any burning. My gastro problems were not bad. I will keep count of my good days and let you know. I will not stop taking them.

[purpleviolet]

All right, such encouragement. I'm just taking 300 mg today and plan starting 400 mg for 4 days tomorrow. I feel some cramps in my gut so maybe I'll try to eat a lot of rice and less fat. My bladder doesn't feel too great, but I couldn't resists that wee sample of coffee at trader joe's yesterday, so maybe that upset everything. PeeVee

[ICLori]

Hi, PeeVee, I'm sorry you are starting to have some intestinal symptoms, unfortunately that's very common. But in most cases, I am told, it does resolve within a couple of weeks.

Some have found that never letting their stomach get too empty helps. And for sure you want to take the pill only after you have just eaten a meal!

It's probably a bit too early to tell if the Cytotec will help your bladder or not. But I sure am keeping my fingers crossed for you and all the others who try it!

@@@@@@@@@@@@@
Violet, that's an excellent idea to track your symptoms day-to-day. That way you can really get a good idea if your bad days are getting fewer or not, or if there is any improvement in general or not. I'm excited for you that you've had a couple of good days, though, I think that might be an encouraging sign!

Blessings,
Lori
P.S. same-ol', same-ol', still doing great, thank you Cytotec.

[KathleenS]

I started misoprostol today. No effects either way yet. My uro has me going slow - 200mcg for 5 days, then 400mcg for 5 days, then 600mcg. I just wanted to confirm with others that they are taking mcgs of the drug, not mgs. The study says mcgs. Is this what everyone is taking or do I have it wrong?

Hopefully some good news to report, soon!
Kathleen

[Butternut]

Best of luck to you Kathleen. Keep us informed.

[icsonja]

Hi all here are my 2 cents worth since I had tp stop cytotek temporarily due to back surgery, but I AM going back on ASAP....leave no stone unturned, or no treatment untried as the case may be ..lol
(1) took it for two weeks
(2) on a medical leave from cytotek...not because of side effects
(3)while on meds had stomace pain and cramping ...but didny stop due to that
(4)side effects didnt stop me.....3 herniated discs did..for now
(5)I would say during week one (looking at my diary) my IC smptoms got a little worse, but began to improve by day 7 and by day 10 I was ready to try some salsa (too soon) but by day 13 I felt about 20% better than pre cytotek
(6)bladder pain began to improve by day 10, but pelvic pain, well I cant be sure since by then my discs had roptured and I didnt know it, I was in ALOT of pain (still) but I am not sure what is IC related or disc related since my ruptured discs are the 3 very bottom ones
(7)the best one of all.... a positive mental outlook, something new to try that just may work for not only me, but many of my IC friends

PS A special thank you to Lori for her HUGE help with getting me thru the scary first days , Lori, you get my angel vote, you have been a freind from day one for me. Bless you.

Sonja

[purpleviolet]

I have just finished upping to 4 100 units (whatever they are mg or mcgs) misoprostol pills a day and haven't had but a few twinges for side affects. Wiil up to 5 pills starting tomorrow for a few days and then start taking full 6 pills/day. Bladder has been like on my better days. That doesn't prove anything. I'm looking for an increase in capacity (in other words, not conscious of the urge to go until there is more in there) and that hasn't happened yet, but I think it is too soon to tell. One good sign is that when I had PFT last week I got sore from it, but not from the one I had this week.

[purpleviolet]

ICSonja, the best of luck to you on surgery. You must be so busy researching with the chronic fatique and fibro, etc. Do you think it is all related? Why did you have to stop cytotec? Because of bleeding? I started about 2 weeks ago but not up to full dosage yet - Taking it easy and the slow apporach is working. Prayers for your surgery and recovery? When is it (or when was it if happening now)? PeeVee

[MelindaP]

Violet,

You give me hope as urethral irritation/burning is what I feel 24/7! Iti is right at my bladder neck. I am trying steroid urethral suppositories right now, but they don't seem to be helping much. I still have other therapies I could try I guess, but you give me hope that Cytotec may just work for me in the long run!

I am also so happy for all you others that Cystotec seems to be helping. Thank you ICLori for bringing this medication to the forefront. I know it has it's risks, but it really seems to be helping!

Melinda :)

[Butternut]

I have hesitated mentioning this but for awhile now, I have noticed my heart racing...too often. Sometimes with shortness of breath. I wanted to figure out what was causing it first. It is worse after taking Cytotec. I hate to say this, but it is. Yesterday I cut some Cytotec pills in half and am only taking 150 mcg instead of my usual 600 mcg. My heart is not racing anymore, already. I am only taking a half tab at a time. So, only three halves per day now. So far, so good. We'll see. I want to find the minimum dose that I can take that will still help my bladder be comfortable.

[purpleviolet]

Hi Butternut - I did not mention it either - but soon after I started to take cytotoc ( I was at the 150 mcg level), I woke up one night and my heart was pounding so hard and so fast that I could feel it in my leg. I was scared so I woke my husband, but I realized that I had this type of sensation before and so I took some deep belly breaths and calmed down. I really didn't think at the time that it was the drug, but may be it was. ( I had also taken 20 mgs. elavil) Anyway I have gradually increased the dose and I am at 500 mcgs. a day, but that problem has not re-occured. I looked up the side effects and an overdose can cause a fast heart beat or seizures so maybe you are sensitive and should go slow. You must tell your doc what you are doing. Have you ever had this happen to you before? My bladder feels about the way it normally does when I am not having a flare which still is far from a normal person's bladder. I wonder if when people are in remission from this, can they do stuff like drink coffee or booze with no effect? I drank some tea yesterday and hot cocoa today and it did what it normally does - aggravate the bladder. I hope you can stick with the drug gradually. I hope you do not have "blood vessel" disease. It seemed to have some cautions about that. Check with doc. I think our bodies get used to this stuff. PeeVee

[violet]

HI,Melinda, no the almond milk did not help my urethral burning. When I say burning I mean urethral burning. That is what bothers me the most. As for the cytoter, This is my 39th day. I have some good days then for some reason I get a flare. I guess my diet is not as good as it should be. I see my doc. this coming Thurs. I hope he has something else to help me but I will also continune taking the cytoter. Also my stomace stills gives me some trouble. Thank you iclori for all your help. I sure am glad this new post is here to continue to help us.

[Shehorst]

Baba Yaga,

I would also like to know what severity of IC each individual was initially diagnosed with. Great idea to follow Cytotec with our own IC group.

Sherry
:cat:

[purpleviolet]

I'm posting to the new thread for cytotec users. PeeVee

[violet]

Hi, I have sever IC. and lots of urethral burning. I guess I am at 50% help with cytoter. I hope it continues to help. I will try to answer all the questions tomorrow. I don't have time today. Talk to you all tomorrow. Violet

[purpleviolet]

1) How long you took it/how long tolerated it
about 2 weeks ago started but gradually building up to 600 mcgs (at 500 now)
2) still taking it or Quit.
still taking it
3) side effects you are living with
frequent loose stools - slight crampiness - one night racing heart in middle of night for a few minutes. don't know if this is a side effect
4) side efects that made you quit
N/A
5) what percent improvement you have seen in urgency/frequqncy
none - too early to tell
6) what percent improvement you have seen in pain
none to early to tell
7) any positive side effects (like ulcer relief etc...)
none

[KathleenS]

I have had IC for 7 yrs. It is refractory and I am on disability. I have both frequency of 30-40 times/day and pain, but frequency is more my problem, of late. I have tried all usual meds for IC, numerous pain meds (I am now tolerant of hydrocodone/oxycodone, so they don't work at all for me), also got Cystistat from Canada and did pelvic floor therapy. I have had both the Interstim and the Synergy devices with multiple revisions (now removed). I have given myself an Elmiron cocktail intravesically 3X/day for 6 months. Probably more treatments, but that's all I can think of at the moment. Anyway, all of these have given me no relief (except the pain meds, before I became tolerant). So I'm praying that Cytotec is my miracle (just started and am up to 400 mcgs with no side effects)!

Kathleen

[violet]

Hi,How long took it. Iam on day43.I am still toleraing it. 2-I am still taking not planning to quit.3-A little nausea.A little diarrhea.4-I haven`t quit.5=-No inprovement in urgegency or frequqncy. 6-about 70% improvement in pain. But only about 30% improvement in urethral pain.7- No positive side effects

[violet]

I went to see my Doc. afew days ago. I now take cymbalta 30mg. and veslcare. They seem to be helping but to soon to tell. I am also taking cytoter. So I hope they all work together to help me

[Baba Yaga]

Thank you PV and V. I will try to do the update on Monday from work -- it's easier for me to work from printouts of people's posts when editing that post.

[ICLori]

Just wanted to update everyone, I got a UTI (the labs confirmed it) and am still on the Cipro for it. I am having some bladder pain at night now and I don't know if that is related to the UTI (it started with the UTI) or if it is going to be permanent or not. Really kind of bummed out right now about this. If the pain stays...don't know what I will do next...maybe Cyclosporine-A.

Anyway, I told you all I'd let you know if the pain came back, and with this UTI, it did.

I hope everyone else is still doing well on Cytotec.

Blessings,
Lori

[purpleviolet]

Hi IClori,
Bummer, but I hope the pain subsides and you return to feeling good. Maybe your bladder needs to undergo repairing again. Are you sure the infection is gone? I'm still on cytotec and I was feeling not too bad, then a major flare came along and I don't know what it is from. PeeVee

[ICLori]

Hi, PeeVee, thank you...to be honest I'm not sure the infection is gone yet...I still have a few days left of the Cipro left to take. Maybe I am worrying unnecessarily, but I'm scared. :(

I'm sorry you are in a major flare, too - you aren't having a UTI too, are you? Always have to wonder when a flare comes along.

Blessings,
Lori

[kimmichele]

Lori,
SO sorry for the uti. Do you know what if anything brought it on? It makes sense that people with compromised bladder linings would get more utis. In fact, its surprising that we don't have more. I think when you get it resolved you will go back into remmission.
Kim

[purpleviolet]

I am bummed out. I don't think I have a UTi because it doesn't burn. I'm think my flare is caused by the PT squishing my c-sect scar which lies over the bladder and from doing kegels. I'm not sure. I 'm stil taking cytotec. Its been since Mar 1st and mid march since on a full dose. IS it going to work and when. I know the trial lasted 3 months. But how long did it take before people noticed a difference. I'm worse so I am bummmed. I'm not taking anything else regularily but had to take amyltriptoline last night to sleep. I also drink my homegrown marshmallow root now. My whole bladder feels irritated from top to bottom. PV

[MelindaP]

PV,

I am so sorry you are feeling this way! I thought I had read somewhere that people who have IC should NOT do kegels because it can irritate the bladder? I bet it is the PT that has it irritated. Can you back off of it for awhile until your bladder settles down? You have only been on the Cytotec for a month, so I would guess iot is going to take awhile for you bladder to fully heal. I hope you feel better soon!
Melinda

[ICLori]

Hi, PV, sorry you are flaring. My bladder still hasn't recovered from the UTI either :(

Blessings,
Lori

[purpleviolet]

Thanks ICLori and MelindaP. I'm actually going to see another PT for a second opinion and when I go back to this one in a month I'll be able to say kegels are irritating or not. I have to do a little experiment. Have you seen the other threads about the bacteria reoccuring in the bladder from biofilms? I bet those little buggers are tryinng to hide out in ICLoris bladder rite now! Knock'em dead IClori!

[KathleenS]

The first time I tried PFT (several yrs ago) the therapist had me doing many kegels everyday. It really increased my pain. The second time I found a helpful therapist who believes kegels make you worse and so it was not part of her program and my pain improved.

[Franny]

That is interesting you should bring up Kegals as an irritant. Before my IC started I was in a rigorous Kegal routine. I came to my own conclusion that maybe they were not as good as they say or maybe I just overdid it. NO MORE KEGALS FOR ME!

[kimmichele]

Hey.
I would think it would take up to six months before you would know anything for sure and I wouldn't worry so much about these ups and downs. I was turned down by my uro for cytotec but am watching ya'll. I may go to another uro and ask for cytotec and or cyclosporin. Last week I went to my shrink and got on topomax (working up to 75 mg) and to my pain dr and got on 100 mg ultram and zanaflex but I started itchinga and had to take a benedril. I am fairly comfortable. Usually pain meds don't work for me. I haven't tried any in a long time because of side effects or inefficancy.
I would urge you all on cytotec to help it as much as possible by staying on a healthy diet as much as possible. I think it will take a combo of things. I also went to a new acupuncture doctor is is close to me and is american - no language barrier. She really helped my feet in one treatment. I am keeping my fingers crossed about the urethra. All she did the first visit was work on my general "chi" as we have had two tradegies in the last two weeks involving friends of my teenager, and I was very run down. best wishes and don't give up hope.
kim

[Baba Yaga]

Kimmi, what was your doctor's reason for turning down the cytotec idea?

You making sure to apprise all of your doctors what you are getting from your others, I hope?

[kimmichele]

a) my pain is in my urethra so the medicine wouldn't get to it - just pass through
b) it is not approved for IC or Urethral syndrome
c)she thinks my pain is caused by the fact that my bladder is way down there (though I had the urethral pain long before I had my baby and had the prolapse which actually occured after the elavile which caused me to gain 60 lbs and get really constipated.) she thinks I need corrective surgery - but I think I should try to get the urethral lining healed first.

[akrose]

Kim- I think that I have urethral syndrome, because I don't even know what pain in the suprapubic/bladder region feels like. I have been taking cytotec since beginning of Feb. 2006 and some days are pain free and then there are days like today- pain - in the urethral/anterior vaginal region. The gyno on friday did a pelvic exam- so that could have triggered it. She started me on Climara patch, progesterone cream and Diflucan q72hrs- because it all started with a horrible fungal infection one year ago. So I don't know,but maybe your doctor is right - all of this stuff passes right through the urethra and doesn't have time to reline anything. If all this doesn't work - elmiron, elavil, cytotec, citracal, n-acetyl glucosamine, butcher's brew, then i don't know what more to do. I am begging God for help at this point, because it is getting harder to keep going on like this.

[Baba Yaga]

Kimmi could you go to the diet area and talk about the stuff in your signature?

What do you use the saw palmetto for?

[ICLori]

Akrose, I'm so sorry you are hurting. There is still Cyclosporine-A, that's next on my list to try if the Cytotec doesn't restore me to not having any pain soon.

Blessings,
Lori

[twiggy]

Still taking cytotec. I was also doing better (less bladder pain/pressure) until I got another blasted UTI approx. 15 days ago. It will take awhile for the inflammation caused from the UTI to subside, I think! However, after being on cytotec for approximately 2 weeks at full strength (200 mg/4 times/day), there is a slight decrease in pain. I am taking D'Mannose to prevent UTI's, too. Will write a complete update in the next couple of days/week. I am also trying to eat a healthier diet. More protein, less wheat and less sugar. So far, despite fickle guts, no ill effects from cytotec. It has not been a miracle drug so far, but the study said approx. 3 to 6 months for significant signs of improvement. May God help us all!

[ICNDonna]

Kimmi, if you have a bladder prolapse, it may be it will take surgery to help get your bladder where it will drain properly and allow a chance for some healing.

Donna

[kimmichele]

ak rose,
You have only been taking the cytotec for two months so don't dispair. about the progestorone - it seems that every one with ic says it bothers them. I quit taking my natural progesterone for that reason. Also, if you are doing too many things one may be counter acting another and you won't know what's helping or not. sorry you are having flair. the ultam and topomax seem to be helping me

[ICLori]

Wow, Twiggy, so your bladder is still acting up from the UTI, too? Maybe it's not just me, maybe it will just take time for my bladder to get back to normal. I had expected by the time I was done with the antibiotics, that I'd be free of pain again but it's just not happening, I'm getting that "gotta go" every fifteen minutes at bedtime feeling again :(

Well I guess there's no harm in waiting and seeing what will happen, although I'm impatient. I'm still doing better than I was before I started the Cytotec so I think it's helping me still. Just not as much as it had been is all.

Blessings,
Lori

[kimmichele]

baba yaga,
I e-mailed you but I dont' know if it went thru. I dont understand outlook. did it go thru?
Kim

[kimmichele]

Donna,
I am just afraid to have those tissues manipulated while they are inflammed. I guess its 6 of one half a dozen the other. I don't get UTI's fortunately. I had one two years ago from drinking club soda on a cruise.
kim

[Baba Yaga]

KimmiMichelle,
The e-mail should show up in your "sent items" folder in outlook.

I can't check my yahoo mail until I'm at home this evening, but will check it then. If you are in a hurry, you can PM me the text of what you sent, since at the moment my ICM PM inbox happens to have room.

[Butternut]

Are you all saying that Natural Progesterone Cream can cause bladder irritation?

I am still on Cytotec but have cut the dose way down because of potentially worsening another problem that I am dealing with. I have had fatty liver for years (with elevated liver enzymes off and on) and am now noticing tenderness and little twinges under my right rib area with a feeling of fullness in that area. They have checked for Hepatitis in the past. None. I was noticing the beginning of this discomfort last fall, way before beginning Cytotec. I am just trying to be very careful. Last night I did a gallbladder/liver flush with the Epsom Salts, grapefruit juice and olive oil (in increments at different times) in hopes that I would feel some relief. I thought maybe some stones. I did see a few but not as many as some have pictured on the net. We'll see, maybe try again in a couple weeks. Anyway I was afraid that the grapefruit juice would really kill my bladder! I think the Epsom Salts caused a little burning but today I am just a little sore in the lower abd area.
I am so hoping that this right rib discomfort goes away eventually. I had an ultrasound of gallbladder and HIDA scan last fall and both were ok, except showed fatty liver, as usual, which is common in middle-aged, overweight, diabetic women. I ask for your prayers please. It scares me, alot.

[KathleenS]

Butternut,

I will include you in my prayers, tonight.

Kathleen

[purpleviolet]

Butternut - I'll pray too - I hope you can continue to get some releif from cytotec. Hasn't helped me yet, but side effects are mostly gone. PV

[KathleenS]

Just wanted how all the new Cytotec takers are doing? Anyone having success? I've been on it one month now with no improvement, yet. Trying to remain hopeful, though. I hope others are doing well!

[purpleviolet]

That's what I'd like to know too. Kathleen - I've been taking 600 mcgs since mid-March and still I don't see improvement. I'm a little discouraged. If 3/4 of the people taking cytotec had improvment after the trial of 3 months, when did they feel better - the night before the trial ended? If anyone at this site feels they got better in less than a month I'd sure like to know.

[Butternut]

I am still "better" after using Cytotec. My back does not kill me anymore and I don't burn all the time. I do get symptoms if a eat ketchup or red tomatoes. If I miss a dose, I can tell it. Cytotec is just enough help so that I don't have to get monthly bladder instillations anymore, so far. I am not cured (yet?) because I get trouble if I miss a dose.

[akrose]

Hi everyone- I am now on cytotec600mcg per day since Feb 1, 2006 and somedays are painfree,like today- and i just focus on these days, I honestly don't know which med is doing it -elmiron, cytotec, n-acetyl glucosamine, citracal, amitriptyline, neurontin- i just keep taking it, and most important i pray to God for comfortable days, and he provides them.

[ICLori]

Oh, Butternut, you are in my prayers, I hope that your liver remains strong and everything gets better.

I think this med is going to be like other IC meds - helps some a bit, some others a lot, and some others not at all or even makes it worse. That is how it's looking anyway so far.

Keeping my fingers crossed for everyone.

I am better than I was, but still having pain at night. So that's not good enough for me...I am going to look into cyclosporine-A next because I want to be 100% better.

Blessings,
Lori

[purpleviolet]

akrose - Maybe the ELmiron is working and not the cytotek or vice versa. How are you going to find out? PV

[akrose]

I don't know which is working and actually this week, while working I have had urethral pain, so right now -my every day thought is- to get my bladder/urethra removed. Just have to find the doc.

[purpleviolet]

But if you have had painfree days, why have it removed. Sounds so drastic. Also there are so many drugs in the pipeline. PV

[ICLori]

Still having pain at night. Am going to ask my doctor to let me try Cyclosporine-A on May 1st. I probably will not start the med until after I fill out my last voiding diary for the Bion trial, as I don't want to mess up the results for that, but I have decided I would like to try Cyclosporine-A next.

Hope everyone is doing well,

Blessings,
Lori

[Butternut]

I am still taking 500 mg Cytotec every day. I really don't have many symptoms of IC anymore. At some point, I plan to try less of Cytotec. My acid reflux is gone and the breast tenderness was taken care of with Vitamin E.
Good luck to all.

[purpleviolet]

Great Butternut! So from reading your posts you started noticing some difference soon after starting cytotec, and gradually have been getting better. I am over a bad flare and I just started Vesicare. I don't feel too bad, today. But I don't have capacity. I can feel like this though. I have to see an increase in capacity and a lack of flares in response to drinking lets say coffee or tea, before I really know. I want to be able to forget about my bladder, but that hasn't happened yet, but it might! I'm trying to figure out what had put in a flare. So I stopped the estrace cream,the colustrum/lactoferrin, hair vitamins and horsetail tea I was taking. I added the tea back in and that seemed OK. Now I'm going to try the estrace cream again and see what that does. PV.