almost a month now

[pottywoman]

It has been almost 1 month now on this. 100 mcg?? once a day and no change. Does it take longer with some people because I'm wondering if I should bother to take it any longer?

[Baba Yaga]

PW, I think it's been just under three weeks for you. Remember that most people end up on 600-800, maybe 300 if they are very sensitive to the side effects.

Since you tolerated the 100 so well, you might talk to your doctor about having you slowly increase between your next two appointments. I think others did this under the care of their doctors. Maybe you could try 200 after your next visit with him, with a plan to go to 300 after a week or two weeks, and slowly go up, depending on your tolerance.

And remember that most people (cytotec users or not) are finding success my combining more than one approach.

[pottywoman]

I've been thinking it over and have decided to stop using this. Hasn't made any difference one way or the other. I'm just kind of down about it not helping right away. Thought it would.

[Baba Yaga]

PW, 100mcg/day probably could not have helped anybody, eventually OR right away. Since you tolerated 100 so well, if you ever scrounge up some extra funds for trying again, have your doctor start you at 200, working up by another 200 each week, until you reach 600, or even 800 if you tolerate it. At the 800 level, it should at least enable you to take NSAIDS medications like Advil or alleve or other stronger antiinflammatories that require prescritions. That is one of the reasons I want to try it, but i don't have anyone to ask right now.

It's good that you stuck it out on almost the whole month on the dose you had. It shows you could do again!

My insurance costs me the same amount per month no matter what dosage I'm on. Hopefully you can end up taking 600 or 800 mcg for the same mount it cost you to try the 100, but you will have to check your plan to find out.

[pottywoman]

I guess I got my hopes to fast with this. I can't "wait out" that long of time. Hard to explain but....I just want something to work fast which I know is not realistic. My poor Uro...not sure what he will say when I see him about his. I may drive him to the loony-bin.

[Baba Yaga]

That's the spirit, LOL. Continue with the trial out of fear of driving your doctor crazy!!! Or, how abaout.... out of fear of ending up constipated again!

I think he will say things similar to what I've said. It would be such a shame for you to give up on something that might have, fairly soon, made you feel better, or enabled you to tolerate other drugs that could make you feel better. If you have the $$ at all, I would give it at least one more month on the higher doses before deciding it wasn't helping.

[purpleviolet]

I get my renewal for cytotec today, but I'm bummed, because to tell you the truth after 6 weeks on 600 mcgs. I don't feel better, atleast not the past few days, unless if was a reaction to estrace cream. I'm going to add in Vesicare. She gave me samples. Nervous to try something new on top of something I already am doing. PV.

[pottywoman]

I'm eating more fruit now so teh constipation should be gone. I doubt I will even keep taking this if my Uro says too. I'm more wanting the birth control again and I know if that is a no then my mind will say why bother with the rest. Oh, that wonderful time started so guess this can't be used like birth control either. Was sort of hoping but.....I really don't want to take any pain pills either. What I want is a normal life back to what I use to have. No more pills...tens...caths.......just a normal life. Gee, I can't remember what it was like to pee normal or go normal amounts of times or life before pain.

[purpleviolet]

PW I agree 100 is too small a dose for something that is normally taken 6 to 8 times more of. But I know how you feel. I don't know what caused my flare. I don't know if I should continue using estrace or drag myself to the compounding pharamcy to get some estridiol in another base or just give up on that. I got to start Vesicare, but I have no hopes. I want a normal life to - not to worry about getting flares. I don't know what it means to not worry. I did though just lie down and listen to a healing hypnosis CD and imagine being in a beautiful place with a beautiful healing multicolored light that travels thru the body to the bladder and heals. Somehow our minds are supposed to know how to heal and lol been trying for over 30 years. Its about time. PV

[ICLori]

Hi, guys, I'm sorry it's not working well for you. I'm still having bladder pain at night, too, which is driving me nuts. I want remission now!

Blessings,
Lori

[purpleviolet]

Yep I do too Lori - Can you explain why you used to have pain day (right?) and night and now just at night you have pain. What about capacity during the day, has that changed? Lying down at night sounds like a position thing or can you be allergic to something in the room? Can inhaling an allergy cause bladder pain? I guess if smoking can then air allergies could. I'm in this huge flare now and I don't know what it is from. I don't know if it is from estrace cream. I used to have an estrogen ring and I didn't react to that. I'm so confused and upset. I was hoping to be well because I have to go on a 4 day field trip with my daughter in a few weeks and it includes flying and trudging around with a zillion kids and parents and I'm freaked, but I really want to do it. Ofcourse I've paid extra to get a single room in the hotel. I can't bunk up with someone and go pee 20 million times at night....I know you all know the score. PV

[ihurttoo]

[QUOTE=pottywoman Was sort of hoping but.....I really don't want to take any pain pills either. What I want is a normal life back to what I use to have. No more pills...tens...caths.......just a normal life. Gee, I can't remember what it was like to pee normal or go normal amounts of times or life before pain.[/QUOTE]I know you want these things....who doesnt? But you arent going to get any of them, without sticking to something! You are just giving up too darn quick on everything! Pretty soon, you are going to run out of things to give up on, because you are running through all the options and dismissing them too quickly. I totally understand your desire to find a "quick fix" for this. And believe me, more sympathetic, I could not be! But the fact remains that almost EVERY treatment, therapy, or med for IC takes many months to work. There just arent any quick fixes out there! I wish I could tell you otherwise, but unfortunately, that is a fact. And I know that deep down, you know this too. Please go back and review your past posts and look at the things that you have tried, and how long you stuck with them. Then go onto the remission board, and read about the people there and see how long they have stuck with the same treatments to see improvement, and then to have total remission. I think if you do this, that you will understand why I am saying. You are just giving up too soon! Some things to consider: 1) Henry Ford failed and went broke 5 times before he succeeded with the first manufacturing plant that is now know as the Ford Motor Company! 2) Babe Ruth struck out 1330 times, but is known for his home runs! 3) Albert Einstein made 1000 unsuccessful attempts before he invented the light bulb. Suppose he had quit after a few? 4) Dr. Seuss's 1st book was rejected 27 times! 5) Twenty one publishers rejected a humorous war novel. You may have seen the sitcom based on this book. It is called M*A*S*H. 6) Walt Disney was was once fired from a newspaper for "lack of imagination, and having no good ideas. By the way, he also went bankrupt severeal times before he built Disneyland. 6) Confucius said, "Our greatest glory is not in never falling, but in rising every time we fall" 7) Winston Churchill failed 6th grade, and was defeated in every public election that he was ever in, (and there were many!), until he was 62 years old. That time, he was elected to Prime Minister. There are many, many more examples of perseverance on this site, if you need more inspiration. The addy is http://www.des.emory.edu/mfp/efficacynotgiveup.html I hope that they will inspire you, as they do me, to hang in there when the days get rough. I am telling you all of this because I want you to realize that there are not an infinate amount of options out there! for the treatment of IC. At some point, you are either going to be at the point of saying, "I have tried everything now, so since there is nothing else out there, I guess I am just going to have to suffer." or you will be saying to yourself, "Okay, since I have tried everything, but they havent seemed to work for me, like they have some of the others, maybe I did something differently than they did? If I go back and do what they did, maybe I will get what they got! And it looks like what they did was stick with things a little longer." Most ICers try the same med for months at a time, adjusting dosages, and trying them with different meds. If you look at the people over on the remission board, and read their past posts, starting way back when they were newbies on the board and still suffering too, you will see one common denominator among every, single one of them....They all tried many things, stuck with the course, and persevered despite momentary frustration. They did this because they could visualize the goal! Even the Bible says, "He that endurath to the end, the same shall be saved." Kind of fits here, dont ya think? I am not trying to get after you, (okay, that was a lie. I AM trying to get after you!! :) ) But I am trying to get you motivated to stick things thru the rough spots so you can get to the smooth roads ahead. You have been so close many times! I am only writing this to you, because I care. I believe that you CAN do it, just like those people on the remission board! But please dont give up on things quite so soon! You are a tough lady to have fought this disease so hard, and so long! So I know that you are tough enough to stay the course with a treatment. Wishing all the best for you! Hugs, Amy :grouphug:

[pottywoman]

I've gone back and tried taking the pills I gave up soon before but I have a problem with most from the side effects. I tried taking the Elmiron 3 times. Each time 3 months but I couldn't handle the side effects anymore. Same for the other pills. My Uro said I must have an extra sensitive systom. I never took any pills except aspirin before this and yes I do get frustrated when I read how others are taking the same pills I tried but couldn't. With this pill I ended up bleeding way too much with my period this time so I had to quit. Can't bleed all over and be in so much more pain from cramping. ALready have a hard time with my period. Also, I am at the point to where I give up. I'm tired of trying.

[ihurttoo]

PW, I must have been editing my post above, while you were writing your post! LOL! I guess we must be sensing each other's brain waves this morning!LOL! Anyway, I hope you will reread it. I edited to add some things about tenacity, and perseverence. It is about not giving up, no matter what. I hope you will read it, and take a look at the link. I find reading it gives me strength when I am feeling discouraged and ready to throw in the towel. I hope you find it uplifting too. I am truly sorry that you have been having so much trouble. In regards to your meds, have you considered that it could be the additives, fillers or the capsule shells themselves that might be giving you the trouble? I know many ICers have had this same difficulty. If this turns out to be the case with you, then you might try asking your dr or pharmacist if you can take any of the meds out of the capsules, and mix with food or drink, and take it that way. Also, if it turns out that the additives or fillers in meds are causing you the trouble, perhaps you can go to a compounding pharmacy, and they can customize your meds for you. Or, I know that many ICers have to have their pharmacies to special order certain meds for them that do not contain those things. Hopefully, some of them will come on here and be able to offer their wisdom and expertise in this particular area.No matter what the problem turns out to be, I do hope that you will keep at this, and keep fighting this disease. Sometimes I get frustrated too. We all do, especially when we are on something new and it just isnt working. But, I have to tell myself on those days that even is this med, therapy, treatment or whatever doesnt work, at least I am doing SOMETHING, to try to make things better. I could not stand to know think that this is it, and it is never going to be better than it is right now. Because even if a med doesnt do the chemical job that I have purchased it for, at least it gives me something that money cant buy....hope. I will take that in any form I can get it these days. I hope that you will too. I hope that someone else will have some ideas on what to do about medication sensitivity. Meanwhile, I really, really, hope that you find something that will work for you, (obviously! LOL!) You deserve to have your pain relieved. I hope the answers and relief come quickly for you. Very Warmly, Amy :grouphug: :kissing:

[vm]

I hear your frustration, PW. It is hard to keep your head up and plug away when things seem to make no difference. :(

You have to go with your gut on things like this. If you are getting a gut feeling after reading other people's stories about their experiences with cytotec and you've spoken with your doctor about it ---- then you go with your gut.

I do hope you find something that helps. I think sometimes we go through periods of complete discouragement when we feel like throwing in the towel. Sometimes we DO throw in the towel for awhile and then later - we get a new surge of energy to fight on. I do believe you will get renewed energy again - it will happen. Right now you're discouraged and that's OK. You'll come back up. :kissing:

[pottywoman]

Amy, maybe I am not posting things right. I have tried just about every pill out there for IC except for the over the counter ones. Which I really don't have much faith in. (Have tried a few from the health food store with no luck. Things get to be too expensive to try with no help from them at all. ) Most all of them I kept taking even with the side effects unless they were so bad I couldn't function. No good if I have a hard time just trying to get to the bathroom. THere is no pharmacy here to make compound pills and my insurance will only cover for their kind and most of the pills were not in capsules. I even tried mixing teh elmiron with the heparin with no luck. I don't just get a pill take a couple and toss it away. I went to the web site that was posted here that had a list of what to try for IC. Looked it over and there was nothing to choose from. Except this pill and the topomax which my Uro said would not be save to take. Which I agree with. I won't do the major "operation" type things. I did do the cloropactin 3 times and the 3rd time was really bad. My uro said no more of it. I even had a spinal done for one thing and I have a huge fear and I mean huge fear of needles but I did it. I'm not looking for a quick fix. Never have but there is a time when you have to say enough already. No more banging my head on the wall. I'm at the point where "giving up" is easier then to keep trying. Some people can keep trying and are fine with and some people just can't deal with anymore.

This pill for me would have been ok to keep taking if I didn't have a period which I have. I know if I took a higher dose I would end up bleeding way to much and the cramping would have made the pain worse for me. Imagine if I hadn't had the extra bleeding my Uro would have talked me into keep taking it.

[ihurttoo]

Pottywoman, I am so sorry that nothing has worked out so far. I hope that my post didnt offend you, I was really trying to encourage you. I just cant stand the idea of anyone giving up, (even if it isnt by choice), when they are still in pain. But since you have done everything you know to do, I can understand why you feel that way right now. Hopefully, your uro will think of something that you can still try, that wont make your symptoms worse. I am sorry if I misunderstood some of the situation. I am hoping for the very best for you, and praying that you will get relief soon! :grouphug: Hugs, Amy

[vm]

{{{pottywoman****** I hope things get better soon. It certainly sounds like you've tried a lot. :kissing:

[Baba Yaga]

Amy, maybe I am not posting things right. I have tried just about every pill out there for IC except for the over the counter ones. Which I really don't have much faith in. (Have tried a few from the health food store with no luck. Things get to be too expensive to try with no help from them at all. ) Most all of them I kept taking even with the side effects unless they were so bad I couldn't function. No good if I have a hard time just trying to get to the bathroom. THere is no pharmacy here to make compound pills and my insurance will only cover for their kind and most of the pills were not in capsules. I even tried mixing teh elmiron with the heparin with no luck. I don't just get a pill take a couple and toss it away. I went to the web site that was posted here that had a list of what to try for IC. Looked it over and there was nothing to choose from. Except this pill and the topomax which my Uro said would not be save to take. Which I agree with. I won't do the major "operation" type things. I did do the cloropactin 3 times and the 3rd time was really bad. My uro said no more of it. I even had a spinal done for one thing and I have a huge fear and I mean huge fear of needles but I did it. I'm not looking for a quick fix. Never have but there is a time when you have to say enough already. No more banging my head on the wall. I'm at the point where "giving up" is easier then to keep trying. Some people can keep trying and are fine with and some people just can't deal with anymore.

This pill for me would have been ok to keep taking if I didn't have a period which I have. I know if I took a higher dose I would end up bleeding way to much and the cramping would have made the pain worse for me. Imagine if I hadn't had the extra bleeding my Uro would have talked me into keep taking it.
PottyW, If I and up taking this cytotec, I will definitely let you know if I have period troubles and they end up getting easier with time.

I really do hope you will try the OTC pyridium, when you feel up to one last thing. When you have flare, just try half a dose, and if it doesn't affect you badly, the next time you have a flare try the full dose. I would be surprised to hear OTC Uristat or AZO pyridim actually made somebody dizzy.


Since your symptoms are so unusual, and your reaction to meds so unusual (not the cytotec but others), what was the basis for your diagnosis with IC -- which specific symptoms did the doctors use to make the diagnosis, or which tests did you have performed to make the diagnosis?

[pottywoman]

Amy, I'm not offended I just feel like no one believes me that I have tried. Lord knows I've tried. No one knows what I have gone through. I spent many nights crying in the hospital becuse I knew what was done didn't help and I knew I was stuck with this for life. If my Uro can get me the pill I want (and have had in the past but gave up for reasons not on my part) then I will happy with that. He has to get another doc's ok for it so I'm not getting my hopes up on it.

I had all the tests done in the beginning they do for this. Before the hydro he said it sounded like IC and after the hydro he said it was. The bladder lining looks great so it's all on the inside between the walls. I can't figure it out and really don't want to anymore.

I'm still bleeding quit a bit with my period and cramping so it had to be this pill. Trying not to take anymore of the Naproxen too. I guess I am the only one who had this problem since no one answered my other post. Hope it goes ok for you Wendy.

[ihurttoo]

Pottywoman, I DO believe that you have tried. I just felt that maybe you didnt give things long enough. I didnt realize that the the side effects and other things became the deal breakers. I was under the impression that you had just gotten frustrated because you did not see results quick enough. I never meant to make it seem that I thought you havent been trying. I was just trying to give you a nudge of encouragement, perhaps it come across as more of a shove. I didnt intend it that way at all! Anyway, I do hope that you know that I only want the best for you, and to see you well again. I hope that your uro is able to get the other dr to agree that you need the pill, and that maybe they can come up with something for you that will work. Best wishes! Amy